Healthcare Ethics

HEALTHCARE
ETHICS
FOR HEALTHCARE
PRACTITIONERS
EDITORS
LAETUS O.K. LATEGAN
& GERT J. VAN ZYL
Healthcare ethics for healthcare practitioners
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HEALTHCARE
ETHICS
for healthcare practitioners
Laetus O.K. Lategan & Gert J. van Zyl
EDITORS
“Science and technology are not
embedded in machines, they are
embedded in people, and minds are
usually connected to bodies”
M. Castells
CONTENTS
Orientation: The need for healthcare ethics .......................................................................... 1
Laetus O.K. Lategan and Gert J. van Zyl
Chapter 1: An introduction to healthcare ethics .................................................................... 5

Chapter 2: Unpacking vulnerability in healthcare ethics ....................................................... 11

Laetus O.K. Lategan
Chapter 3: The difference between right and wrong............................................................. 27

Gert J. van Zyl and Paulina van Zyl
Chapter 4: The quality of healthcare: A care ethics approach .............................................. 43

Linus Vanlaere & Roger Burggraeve
Chapter 5: The Influence of culture, values and faith on end-of-life decisions ..................... 53
Joyce MacKinnon and Amber Comer
Chapter 6: ETHICS AND HUMAN RIGHTS IN HEALTHCARE ................................................... 65

Andrè Moore
Chapter 7: Euthanasia, do we dare? ..................................................................................... 73

Charnè Viljoen
Chapter 8: Community-based participatory research in healthcare: ethical issues

and impact on healthcare practitioners .............................................................. 81
Moira S. Lewitt, Pamela Campbell and Beth Cross
Chapter 9: Ethical decision making processes ...................................................................... 97

Willem H. Kruger
Chapter 10: Spirituality and healthcare ................................................................................ 113

Marius Swart
Healthcare Ethics Code

AUTHOR CONTRIBUTIONS .................................................................................................... 130
“To understand medicine better, therefore,
we need to explore the way in which
science functions, and to confront the
technologically-based world”
D.G. Jones
ORIENTATION
The need for healthcare ethics

1. BACKGROUND TO THE BOOK PROJECT
The debate on and interest in ethical challenges in healthcare is not new. Evidence for this
comment can be found in (the earliest) recorded medical-ethical codes such as the Hippocratic,
Helsinki and Geneva Codes. These codes are further supplemented by reports from the World
Healthcare Organisation (WHO) and a continuous debate on how best to provide healthcare in a
global environment. The challenge is well described by Ten Have (2011) who identifies the different
meanings attached to bioethics in different countries and different health systems because of
technological developments, socio-economic needs and developments stimulated through
business and industry partnerships (especially pharmacology).
A common observation deriving from these codes, reports and debates is the ethical vulnerability
from which healthcare practitioners are currently suffering. As a result of ethical vulnerability,
healthcare practitioners often find it hard to deliver quality-based healthcare.
Ethical vulnerability is closely associated with four dominant influences on healthcare. These
influences are:
■■ Healthcare is unthinkable without modern technology. Thanks to technology, the so-called

“machbarkeit aller dinge” influences healthcare practices. Three different opinions portray
the impact technology has on healthcare: Consider the following opinions: We should not do
everything that we are able to do (Jan-Hendrik van den Berg, 1969); we should do everything
we can do (R. du Jardin) and technology is in service of life (Echbert Schuurman, 1995).
■■ Medical economy (medical industry): The pharmaceutical industry sparks questions with
regard to medical insurance and business ethics. The question is correctly asked: What
is at stake: health improvement or profit margins? This is closely related to consumerism
in healthcare. Typical debates are around needs versus wants in healthcare, substitution,
replacement and make-over.
■■ The democratising of healthcare systems: Equality and access to basic health and healthcare
systems open challenges such as affordability, necessity and quality. At the same time a
debate on e-medicine, e-health and tele-medicine is opened.
■■ Slow living as a contra culture: Slow living is a post-materialistic culture advocating a

return to a holistic lifestyle, and looking at how we live and what we consume. It advocates
sustainability of communities, happiness (“the real good life”) and harmony between people
and their habitat (as collective for work, home and social networks, interaction and support).
Ethical vulnerability necessitates a new understanding of healthcare ethics; its meaning(s) and
application(s). In addition, a post-religious and post-structural world together with a technological-
driven society, require a new understanding of the healthcare environment.
2
HEALTHCARE ETHICS FOR HEALTHCARE PRACTITIONERS
Healthcare ethics is trans-disciplinary of nature and transcends the common dictums of do no

harm, do to others as to yourself and be your brother/sister’s keeper. Healthcare ethics calls on
stewardship ethics where you care for something as if you own it. In addition, healthcare ethics
is challenged through questions such as: are we caring for patients because of a social contract
between healthcare worker and patient? human and constitutional rights? humanitarian or religious
conviction and/or professional calling?
It should be obvious that (healthcare) ethics is more than moral behaviour (expected reactions and
behaviour) or the application of norms and standards. Healthcare ethics depends on a cosmological
understanding of ethics [Kobus (J.H.) Smit, 1985], informed decisions (Joseph Badaracco, 1998),
responsible acts (Joachim Douma, 1999), ethical relations (Paul Schotmans, 2012) and ethical
growth (Roger Burggraeve, 1997).
2. OBJECTIVE OF THIS BOOK
This book promotes the argument that modern day healthcare ethics cannot be limited in scope
to apply only to the patient but needs to apply to the healthcare practitioner as well. Healthcare
practitioners include doctors, professional nurses and therapists. The relationship between the
patient and the healthcare practitioner has shifted from a power relationship (the healthcare
practitioner has the knowledge and skill to cure, care, heal, support and comfort) to a complementary
relationship (mutual respect, acknowledgement of individual interests). Leadership, mentorship
and coaching play an important role in facilitating this shift.
In the debate on healthcare ethics we need to consider questions relating to: the preservation of
life; the uniqueness of people, their personal values, faith and traditions; the protection of dignity,
welfare, personal security or safety; freedom of choice and informed consent; the enhancement of
basic medical care; affordability, economies of scale and consumerism; professional attitude and
patient privacy, shared information on therapies; potential risk and value of therapies and treatment,
coaching, leadership and mentorship.
3. OUTLINE OF THE BOOK
Several themes informed this book on healthcare ethics. The themes are:
■■ Vulnerability in healthcare ethics
■■ Decisions between right and wrong
■■ Quality of care
■■ Life-ending decisions
3
■■ Research involving the community
■■ Making ethical choices
■■ Spirituality in healthcare
The focus of the book is to contribute towards a new understanding of healthcare ethics and
how to deal with healthcare practitioners’ ethical vulnerability in a post-religious, post-structural,
technology-informed and human rights-driven society.
This book suggests guidelines to the patient and healthcare practitioner and invites an engaged
dialogue between patients, healthcare practitioners, healthcare managers and administrators, and
habitats supporting the people working in healthcare and the people who benefit from healthcare.
REFERENCES
Badaracco, J.L. 1998. Business ethics: roles and responsibilities. St Louis: McGraw-Hill.
Burggraeve, R. 1997. Een christelijke ethiek van het haalbare. In Wuyts, B. (red.). De geest rust nooit:
Gelovigen in beweging. Kapellen: Patmos. 143-152.
Douma, J. 1999. Grondslagen christelijke ethiek. Kampen: Uitgeverij Kok.
Schotsmans, P. 2012. In goede handelen. Tielt: Lannoo.
Schuurman, E. 1995. Perspectives on technology and culture. Potchefstroom: IRS.
Smit, J.H. 1985. Etos en Etiek. Bloemfontein: Patmos.
Ten Have, H. 2011. Bioethiek zonder grenzen. Mondialisering van gezondheid, ethiek en wetenschap.
Nijmegen: Valkhof Pers.
Van den Berg, J-H. 1969. Medische macht en medische ethiek. Nijkerk: Callenbach.
4
CHAPTER 1
An introduction to
healthcare ethics

An introduction to healthcare ethics
1. CONCEPTUALISATION
The concept “ethics” finds its origin in the Greek èthos and/or êthos. These words refer to custom,
practice, attitude and motive and relate to universal principles for moral human behaviour and
the subsequent identification and application of norms or values derived from these principles.
Essentially ethics refers to people’s moral behaviour following on a particular value system.
Behaviour is informed by their deepest motivation, also known as ethos. The application of a
principle is commonly referred to as norms or values.
In view of these concepts can healthcare ethics be defined as the identified principles informing
the moral practices and behaviour of healthcare practitioners towards patients and the application
of the values and norms in the performance and execution of healthcare. Ethics influence both
healthcare practitioner and patient. In addition, ethics is also extended to healthcare management and
administration, and to the habitat supporting healthcare practitioner and patient. This view corresponds
with Glouberman and Mintzberg’s (2001) identification of the “four worlds” in healthcare: cure, care,
control and community. [See Chapter 2.2 for a description of these four worlds.]
The working definition of healthcare ethics in this book is the identification of principles and the
application of values and norms informing the practice of healthcare. The scope of this definition
will cover the four worlds associated with healthcare, namely cure, care, control and community.
2. ADDRESSING THE MAJOR THEMES IN HEALTHCARE ETHICS
A central theme in this book (see Introduction and Chapter 2) is that healthcare ethics cannot be
limited in scope to apply only to the healthcare practitioner or only to the patient. In addition,
healthcare is not restricted to the conventional settings of hospital, clinic or hospice only.
A “site” that cannot be overlooked is the practice of healthcare within a community – as part of
basic healthcare or a context for research. Healthcare ethics deals with vulnerable people (healthcare
practitioners, patients, communities), situations and institutions (healthcare management and
administration). It is for this reason that Lategan (Chapter 2) and Vanlaere and Burggrave (Chapter 4)
deal with vulnerability and ethical relationships at length. Lategan’s arguments informed the three
positions taken in this book (the scope of healthcare ethics, the context for healthcare ethics
and the encompassing influence of vulnerability on healthcare ethic). In addition a cosmological
understanding of healthcare ethics is presented. In this presentation it is evident that ethics is always
defined within a particular context and that regardless of religion and/or cultural orientation, there are
universally accepted principles, values and norms that inform healthcare ethics.
It is therefore expected that (healthcare) ethics entertain the difference between right and wrong.
Van Zyl and Van Zyl (Chapter 3) argue that this differentiation is not that simple, and for the health
6
professional, may be more complex than what is sometimes envisaged. Ethics is particularly
applicable to the professional practice of medicine in guiding decision making within the doctor-
patient relationship, and protecting self-directedness for the patient in an essentially unequal
power relationship. The maintenance of the reputation of the individual practitioner and the medical
profession as a whole are important. The links with freedom, ethics, morality and professionalism
are explained and some solutions are suggested. One of these solutions is the “patient charter”.
Ethics is the formal expression of values and norms that a profession or business or other societal
structure selects and prioritises to ensure a particular standard of moral decision making and to
protect their reputation. It is ethics that transforms the subjective nature of right and wrong to an
objective measure of moral behaviour.
Vanlaere and Burggraeve (Chapter 4) add a specific understanding to healthcare ethics. They
approach healthcare from a quality-of-care perspective. It is evident that today, more attention
is given to the quality of care than ever before. These authors link this interest to the greater
emphasis that is placed on service delivery because of safety requirements and to the impact that
good or poor healthcare delivery can have on healthcare systems. This raises the question as to
what quality is when it comes to healthcare. For them quality demands an increase in carefulness,
with its objective means and methods, and an increase in caring, with its subjective attitudes and
virtues. This has a direct impact on professionalism and responsibility. As a result healthcare must
be seen as a relationship and not a product. Hence an ethical framework has to inform healthcare
regardless of the context and situation.
This relationship is based on an ethical obligation for healthcare practitioners to provide culturally
competent, patient-centred care. MacKinnon and Comer (Chapter 5) claim that in order to do so,
healthcare practitioners need to be aware of patient and family culture, values, and faith-based
beliefs as they will impact end-of-life decisions, to mention but one scenario. Additionally, the
culture, values and faith beliefs of the healthcare practitioner will also affect end-of-life decision
making, and sometimes these two entities collide. In this chapter the authors provide some
guidelines to consider in working together to make culturally sensitive end-of-life decisions. It
is also evident that healthcare cannot be removed from a human rights point of view. Moore’s
contribution (Chapter 6) supports the notion that medical issues belong within a human rights
culture. It is this culture, with its universal principles, that contributes towards the care of patients
and the security of their well-being. To illustrate this point, Viljoen (Chapter 7) deals with euthanasia
in a South African context. She points out that although a case can be brought before court and
assisted life-end euthanasia can be granted, it still leaves the healthcare practitioner and patient in
a vulnerable position. This proves the point that although an act may be legal, it does not safeguard
the individual or enable the individual to be at ease with such an act.
7
In healthcare the focus is very often on the healthcare practitioner and the patient only. A neglected
topic in healthcare ethics is how do we deal with communities? Lewitt, Campbell and Cross
(Chapter 8) address this issue by focusing on community-based participatory research (CBPR).
In CBPR community participants are actively engaged with, and influenced by, all aspects of the
research process, from design to dissemination. There is a commitment to practical change in
this strength-based approach, which builds trust, enhances community capacity and may lead
to solutions to complex health questions that were unforeseen by the academic researchers. As
healthcare research moves from working ‘on’ communities to working ‘with’ communities, a
concomitant shift in the ethical orientation of healthcare practitioners is required. CBPR requires an
awareness of power relationships between healthcare practitioners and the community members
or service users. In CBPR the whole community should be considered the subject of research and
ethical considerations should encompass respect for community as well as individual autonomy.
When working with children there is a further need to work sensitively with power dynamics.
Kruger (Chapter 9) is right when he remarks that healthcare is not a new concept and several
modules are available to assist the healthcare worker with the decision making process. However
healthcare is a very dynamic field, causing the ethical decision making competency of healthcare
workers to become more and more important but also more challenging. The healthcare worker
should be aware of how changes within healthcare could influence the ethical decision making
process. Healthcare workers should be aware of the multifactorial approach that is needed within
the decision making process. It is recommended that an integrated approach be followed in which
the healthcare worker should consider following a systematic analysis of the ethical issue at
hand. The purpose of such an integrated approach is to ensure that the ethical decision making
process is conducted by means of a simplified step-by-step approach. Healthcare workers must
remember that they do function within a multidisciplinary team. However, the final ethical decision
is essentially an individual process and the healthcare worker will take responsibility for the entire
ethical decision making process no matter what approach is followed. The outcome of their ethical
decisions might have a much more far-reaching effect than expected.
Another neglected theme in healthcare ethics is spirituality. This should not be confused with
religion or faith. Swart (Chapter 10) unpacks this important theme and explains how spirituality
can assist with the healing of a patient but also how religion and faith can open existential issues
in healthcare that should be part of the holistic treatment of a patient. As healthcare practitioner,
patient, healthcare management and administration and habitat may not share the same spirituality,
religion and/or faith, all of those involved in healthcare should guard against making spirituality,
religion or faith the condition for treatment rather than a consideration in healthcare.
8
3. AN OUTLINE OF HEALTHCARE ETHICS
Based on the discussion of what healthcare ethics is, the following outline for healthcare ethics
can be presented:
■■ Healthcare ethics is the identification of principles and the application of values and norms
informing the practice of healthcare. It aims to transform a situation and to bring about a
change in attitude, behaviour and practice.
■■ Healthcare ethics cannot be limited to the patient only but covers four worlds associated with
healthcare, namely cure, care, control and community.
■■ Vulnerability includes human experiences such as ethical decision making, physical suffering,
psychological disorders, economic challenges and cultural orientation. It goes without saying
that every person is dependent upon other people’s understanding of his/her vulnerability and
therefore his/her care. In a medical context it is about caring for life, health, state of mind and
general well-being.
■■ Quality healthcare is important due to safety associated with the healthcare value chain. The
core of this value chain is not healthcare as a product but healthcare as a relationship.
■■ Healthcare ethics is informed by family, culture and religious values. Although a healthcare
practitioner may not share those same values, people’s values should be respected and
accommodated in the practice of care and decision making. The healthcare practitioner
deserves the same respect for his/her values as does the patient.
■■ Healthcare ethics can never be removed from professional practice. Healthcare ethics should
form part of healthcare education for professionals and healthcare ethics orientation for
patients and their habitat.
■■ Part of extending our understanding of healthcare is to do research within communities. This

often presupposes a power relationship between those who know and those from whom the
information is gathered. This situation opens the possibilities of power play and vulnerability.
In dealing with communities the primary objective should remain, namely the preservation of
the dignity of all involved in a project. This can be facilitated by shifting the emphasis from
research on to research with.
■■ Legality can never be removed from healthcare. It does not, however, remove ethical
responsibility from healthcare. The law dictates what can be done, while ethics informs how
it should be done.
9
■■ Ethical decision making cannot be avoided. Although informed decision making is the
cornerstone of ethical behaviour, proper guidance is needed to make the ‘best interest’
decision to address the ethical challenges of a particular situation.
■■ Spiritual needs and religious orientation should be integrated in healthcare but cannot form the
basis for effective healthcare.
■■ Healthcare practitioners, managers and administrators should be trained, mentored and

coached in dealing with healthcare ethics. Patients and their habitat should be sensitised
regarding the ethical rights and responsibilities of healthcare practitioners, managers
and administrators.
REFERENCES
Glouberman, S. & Mintzberg, H. 2001. Managing the care of health and the cure of disease. Part 1:
Differentiation. Health Care Management Review. Winter 56-69.
10
CHAPTER 2
Unpacking vulnerability in
healthcare ethics
Laetus O.K. Lategan

Unpacking vulnerability in healthcare ethics
1. VULNERABILITY – A MULTI-PERSPECTIVE REALITY
In a case study entitled, “The Serphent was here” an account is given of an encounter in a
repository of medicine which resulted in the patient’s blindness. A bottle was wrongly labelled.
The case study reported by Badaracco (1998) illustrates four challenges: a patient believes
that the Serphent has visited her (the Serphent, being associated with the “devil”, symbolises
punishment because of the wrongful personal life (personal ethics, religion) of the patient); a
medical practitioner blames himself for his negligence and oversight; the hospital’s superintendent
realises that this may be the end of this American support programme in his country because of a
mistrust that existed even before this incident; and the community’s distrust has been confirmed
by the misfortune.
The ethical dilemma is on truth telling because of vulnerability. If this event were to be made public
it could bring an end to the work of this non-profit organisation which has been providing modern
treatment for surgical disorders. The dilemmas are whether the patient should believe that the
blindness was caused by the Serphent, in which case there is at least a chance to continue with
this programme, or should the risk be taken and the beans be spilled, even though this might bring
an end to a programme from which many people have already benefitted. Depending on the angle
from which one is looking, different answers may be given (see Lategan, 2002).
In reading this case study it is evident that people (regardless of their position) are vulnerable.
Vulnerability can be caused by a real life incident (an incident in a repository of medicine, for
instance), inability to help (the doctor’s dilemma) or mistrust from/in/of people, a programme
or a situation (foreign medical assistance, for example). The case study confirms that it is not
only health challenges that contribute to people’s vulnerability but the way in which the treatment
is experienced. In addition it is evident that neither medical staff, medical organisation nor the
community in general can escape the vulnerability of ethical dilemmas in healthcare.
In looking more deeply into these ethical dilemmas, one cannot escape the fact that vulnerability is
part of human existence. When people are faced by a situation (read illness) in which they are no
longer in command (for example, people cannot heal themselves), this is when they realise their
own vulnerability. When we observe people with their physical, emotional and human needs, then
we note their vulnerability. It is therefore no surprise that ethics has as its “first” dictum not to do
any harm and, by implication, to care for other people. Do no harm is coupled with do to others
as they should do to you.
The implication is that vulnerability is a multi-perspective occurrence. Hence, vulnerability should

be viewed from different perspectives. The intention is to promote the argument that vulnerability
12
is not limited to patients only and that a multi-perspective view on vulnerability in healthcare ethics
can contribute towards constructive guidance for everyone dealing with vulnerability in healthcare.
2. VULNERABILITY IN HEALTHCARE ETHICS – A PERSONAL

ACCOUNTABILITY
As a student of medical ethics I was interested in three major issues: questions around the
beginning and ending of life; questions around ethical decision making where there is an ethical
conflict of interest and how societal developments impact on our understanding of illness and
consequently how patients are treated – especially the vulnerable because of poverty, war and
life experience.
These questions remain valid due to the ongoing ethical challenges associated with them.
To begin with, the abortion and euthanasia debates are good examples of ongoing ethical dilemmas.
Legislation in South Africa moved from no abortion on demand (Act 2 of 1975 – Abortion and
Sterilisation Act) to abortion on demand (Act 92 of 1996 - Choice on Termination of Pregnancy
Act). Following a lengthy debate on active and passive euthanasia, the question of ending life on
request has also now emerged in South Africa (in Chapter 7).
My interest in medical ethics was initially stimulated by four powerful events which influenced my
research, doctoral studies and own knowledge of healthcare ethics. I will not be giving a detailed
account of these events in this publication, it being sufficient to mention that the events themselves
contributed to shaping my own comprehension of healthcare ethics. The mentioned events led to
a shift in my own original orientation and to my quest for an in-depth understanding of healthcare
ethics. To unpack these comments, the following highlights from these events can be reported:
■■ For some length of time I was exposed directly to vulnerable people. Their vulnerability was
caused by illness, poverty, the South African border war and political unrest. I observed how
life events caused people to lose trust in themselves, other people and political systems.
The lack of money increased the mistrust the vulnerable people had because sometimes
they could not afford basic food and livelihoods, let alone access to medicine and medical
treatment. In anecdotal fashion, elderly people commented that their children, family and
friends disregarded them and very often they were treated as if they no longer had the ability
to make any decisions for themselves. Their lives had in effect been taken over (for geriatric
references see Holtzer, 2015 and Vanlaere and Gastmans, 2010). Soldiers in the border
wars and police in public unrest situations very often questioned the cause but had limited
choices as the ideology of the day was informing/legitimising what they were doing. Victims,
including the military and police, of global terrorism since 9/11 have opened this debate
13
again. A relevant example is the increase in hand surgery needed as a result of explosions
and fire because of combating international terrorism. As people age, there is a decline in
ability and impetus. In the book of Ecclesiastics in the Bible, the Teacher describes aging
and vulnerability in a poetic manner: the weaknesses of old age are described in terms of
weakness in human, spiritual and sexual abilities, and life’s end is compared to a broken bowl
– it cannot be used for anything anymore. It was Alexander Strachan’s book, “Verste Grens”,
that established the concept that war is not limited to a physical place, but rather that it is
something that is within ourselves: he describes events that culminate in the realisation that
people are vulnerable, especially in situations where events (read medical challenges) beyond
their control have taken charge of their lives. These are the influences that have contributed
to my desire to understand healthcare ethics and to know how to deal with vulnerable people.
■■ The seeming contradiction between power and care presents two sides of a single theme.
Power represents strength, domination, authority and dominance whilst care embodies
maintenance, attention, repair and concern. It was this seeming contradiction that appealed
to me and sparked the question of whether care can be provided outside the basis of power.
Typical examples are the sophistication of medical technology (see for example Schuurman)
and the fear of technology especially where there has been limited exposure to technology by,
for instance, a patient, in a situation of communication between patient and doctor, nurse and
healthcare worker; there may be little or no basis for common understanding because of the
lack of exposure to technology on the part of the patient. The situation may be exacerbated
in situations where gender inequality exists: not everyone is prepared to be treated by a
female doctor, and an elderly person may not be comfortable taking advice from a much
younger doctor. In a South African context, Phalime (2014) gives a good account of such
dilemmas in her book: Post-mortem: the doctor who walked away. She notes how language
inability adds to people’s vulnerability. This occurs when there is limited communication
between doctor and patient in situations where, for example, they cannot speak each other’s
language. How do you explain your challenge, or how do you respond to questions if you
don’t understand what is being asked? Furthermore, people fear technology if it is unfamiliar
to them. If a patient lives in a remote area and has never been exposed to technology, he/
she may not be able to comprehend its benefits, and may well be afraid of it. Differences in
culture, life orientation and experience can leave people in extremely vulnerable positions.
Jan-Hendrik van den Berg’s (1969) question as to whether we should do everything that we
are able to do, lends a further dimension to the situation. The essence of this question hints
at the fact that ability (read power) is not without ethical challenges. A good example may
be genetic engineering (power): is it ethical to create the proverbial Frankenstein monster?
Another example is the question of whether a person has the right to make decisions about
his/her own death, and whether he/she may or may not decide to end his/her own life with
14
medical assistance. Considering the contradiction between power and care sensitised me
to the fact that without power (for example in the form of money, or well- trained officials)
government cannot deliver basic healthcare. Poor service delivery (either through misuse of
service, position and situation) can derail care and contribute towards increasing people’s
vulnerability. Well-known examples are hospitals that cannot optimise performance due to
mismanagement or no management at all, and patients being, ill-treated, injured or even
raped, for example.
■■ Due to an emerging healthcare economy (see Remans, 2005) and the rise of managerialism
in healthcare (see for example Glouberman and Mintzberg, 2001 and Creplet, 2013), a gradual
shift has taken place from care for the patient to care for the organisation. Healthcare has
become a commodity of significant value for medical research, pharmaceutical companies
and private service providers (see Ten Have, 2011 and Creplet, 2013). It is therefore no
surprise that healthcare management has become a profession in own right. From my
observations, the traditional nurse’s cloak has been replaced by a more modern, corporate
image. At the same time, record keeping and control have been growing phenomena. As with
any other major company, corporate governance and accountability have become the order
of the day. Glouberman and Mintzberg (2001) have assisted tremendously by identifying four
different “worlds” or “activities” in healthcare: cure, care, control and community. Although
their analysis is given from a management perspective, it is most helpful in understanding the
complexity of the healthcare system, its interrelatedness and interdependence and the impact
of each of the “worlds” on each other. Glouberman and Mintzberg (2011) correctly advocated
a closer link between these worlds. From a healthcare perspective, the same sentiment is
echoed by Creplet’s (2013) suggestion that there should be more homogeneity between
cure, care, control and community. In the context of this study the cure is associated with
doctors, care with nurses, therapists and carers, control with the healthcare management, and
community with relatives and different stakeholders in healthcare. The case in point is simply
that whether one is referring to the performing or managing of healthcare, or benefiting from
healthcare, none of these should exist without the others. Linked to these different “worlds”,
the claim be made that healthcare workers (as collective term for doctors, nurses, therapists
and auxiliary workers), patients (regardless of the state of their health), administrators (as
collective term for healthcare management) and the community (as collective term for family,
friends, associates, beneficiaries if healthcare, auxiliary services) should all benefit from
healthcare ethics. The shift in emphasis is also evident in what Creplet (2013) refers to as
the “third revolution” in healthcare. Here technology and commercialisation impact on how
healthcare is delivered. (Also see the discussion in the next paragraph on the interrelatedness
of these different parties in healthcare.) This shift has also benefitted healthcare workers
by acknowledging that they too, have needs. The legal and ethical debate as to whether a
15
nurse, for example, may go on strike, is a fair indication that healthcare workers have needs
too – they too are occasionally vulnerable. Vanlaere and Burggraeve (2013) correctly refer to
a situation where the healthcare worker sometimes has no other option but to behave in an
unethical manner because this may be his/her last resort to raise concerns about unethical
practices. The conclusion that I arrived at was that healthcare ethics can no longer be limited
to the needs of the patients only but must be extended beyond this. Cure, care, control and
community are all in need of healthcare ethics.
■■ Studies in medical ethics, sociology of medicine, philosophy and pastoral care, as well as
studies of healthcare providers and systems, have created an awareness that healthcare
ethics is more than merely a concept – it should be the backbone of the cure, care, control
and community support provided by doctors, nurses, healthcare practitioners, managers and
administrators. New developments in medicine and healthcare have revealed new challenges
with regard to medical costs, treatment and legislation. Three dominant influences on
healthcare are evident from these studies. The first of these is that personal life has become
extremely individualistic. Because of this development, the focus is more on the individual’s
needs and rights, and healthcare has become more of a private matter than it was previously.
Secondly, healthcare is a commodity, with profit making becoming as important as access
to sophisticated healthcare and therapies. This is in sharp contrast to government’s drive
to promote access to basic healthcare, to regulate private healthcare providers and to steer
clinical research towards addressing major health challenges such as HIV/Aids, diabetes,
tuberculosis, substance abuse and malnutrition. Thirdly, there is the realisation that healthcare
ethics does only affect only the patient but all healthcare service providers, the community
and stakeholders as well. Just as patients have rights, so do the people in the healthcare
profession; just as patients should be treated with respect and dignity, so too should the
healthcare providers; just as ethics is informing personal care, so should organisational
behaviour and activities also be steered by ethical behaviour.
Subsequently in my own studies and according to my understanding of these developments

and phenomena, I wrote a thesis in philosophy on the compromise in medical ethical dilemmas.
Although many findings can be reported, the one I want to single out is that the compromise
highlights that occasionally we need to make ethical decisions despite the fact that one has only
one choice between two conflicting commitments. A typical example would be the choice to
terminate pregnancy if the continuation thereof threatens both the mother and the unborn child’s
life. The conflict arises where the ethical imperative is to protect both the life of the mother and that
of the unborn child but in this situation it is only possible to protect the life of one of the two. The
compromise functions typically in a borderline situation and is associated with terminology such
as the choice between the lesser of two evils. Such terminology and the fact that a person has a
very limited choice in a borderline situation, emphasises the vulnerability of people.
16
It was Schotsmans (2012:17-22) who reminded me that healthcare is essentially based on

relations. Within this relationship, accountability, responsiveness and responsibility are very
important. Although general guidelines for healthcare may exist, one is always looking for
guidelines informing a specific situation, the primary reasons being the uniqueness of personalities
and that people are extremely vulnerable. In this context, Schotsmans (2012: 136-138) adds the
importance of ethical growth since there are both limitations and opportunities. In conclusion,
Schotsmans (2012: 141) states that healthcare ethics should inform, guide and provide a futuristic
perspective on how to deal with human vulnerability.
The emerging question remains: who is the vulnerable?
3. WHO IS THE VULNERABLE?
The World Health Organisation (2013) defines vulnerability as an essential feature of human
nature. In addition, special vulnerabilities are addressed as a consequence of personal disability,
environmental burdens, social injustice or the application of emerging technologies in the
biomedical sciences.
Although the common practice is to understand vulnerability in the context of patient care, it can
never be limited to patient care only. In medical ethics and bioethics patients are vulnerable by
default. But it would be a limitation to regard only the patient as vulnerable. The medical practitioner
and healthcare workers are equally vulnerable. For many years the perception has existed that
healthcare ethics focuses exclusively on what the doctor and the nurse should do/should not do
(as a basic understanding of ethics), and suggests that the patient is the only one with (ethical)
rights. The patient (customer – sic!) is always right! This perspective outlines an outdated service
model (what about the auxiliary professions?) and a consumer-driven model – as if being a
patient is similar to being a customer (with implications of supply and demand, quality of service,
customer satisfaction, value for money, and so forth). Care however embodies vulnerability; hence
you need to protect and watch over the vulnerable. Vulnerability signals weakness and calls for
protection. You have to extend support to those in need of the support. But those who can care for
others are very often also in need of care themselves. It would therefore be a limitation to reserve
healthcare ethics only for the patient.
This is no new insight but something that we keep on overlooking. This behaviour is contradictory
to the spirit of so many medical ethical codes. For example, the Hippocratic Oath, the Helsinki
Declaration and American Medical Association all advocate respect for life, respect for people
and respect for humanity. Although not necessarily explicitly stated, it is not only the patient that
is vulnerable. Doctors, nurses, therapists, carers, family and friends are also vulnerable in the
context of healthcare and cannot be excluded from consideration in the promotion of a sustainable
17
healthcare ethic. The fact that their ethical needs should also be treated as a priority often takes a
back seat, however, when medical ethics and bioethics are discussed.
In line with this observation, one cannot but agree with Holtzer (2015), who argues that no one
can claim that he/she is not involved in healthcare. This observation is imbedded in the question:
what care would you like to receive and what care would you like to extend? Healthcare cannot be
limited to medical practitioners, auxiliary healthcare professions or patients only but should involve
all healthcare providers and the community.
Several scientific disciplines and professions can assist in framing our understanding of healthcare
ethics. In dealing with healthcare, Holtzer (2015) discusses diversity, technology, autonomy,
engagement and self-realisation. The conclusion is clear: healthcare should be understood in
juxtaposition to a variety of scientific disciplines (healthcare as science), professions (healthcare
worker as profession) and humanity (active engagement to improve the life of the vulnerable).
The perspective that this chapter confirms is that healthcare ethics should be extended beyond the
typical doctor-patient relationship. The argument that is currently leading this perspective favours
an approach that will include the patient, doctor, nurse, therapist, carers, family and friends, as
well as the medical industry as a whole, with the latter referring to the commercialisation and
corporation of healthcare.
In the next section, vulnerability will be further highlighted by means of a medical narrative. A
medical narrative embodies the concept of using a story to help people to understand the
complexity of healthcare ethics and challenges. The value of a narrative is that through storytelling
an account is given of a real life example, for example the Tale of the Surgeon’s Knife.
4. NARRATIVE
Life is not fictitious. Neither is illness or suffering.
One morning someone who is very close to me called me and informed me that “old age” had
arrived. She felt very sick. She was not able to care for herself anymore.
Since I was out of town I was not able to assist. The best solution I had for this challenge was to
suggest that an ambulance be requested, via the doctor’s rooms that could take her to hospital for
tests and possible treatment.
This advice had a history. The week before she had also been feeling very sick due to a set-back
and I had taken her to the doctor’s room. It was no easy task since she could hardly walk and
getting in and out of the car was quite a challenge.
18
She was also living on her own.
The doctor was most helpful. The Emergency Medical Care (EMC) technician was very professional
and reacted immediately to her need. The hospital staff at the closest hospital was supportive
but no bed was available. When transferred to another hospital, a number of forms had to be
completed. The impression was that admission is the key to treatment.
One can imagine the fear and the anxiety for the new and the unknown – a ward and not your own
bedroom, nurses making observations and recording them, tests and more tests to inform the best
treatment, communication in different languages, visits by different specialities to care holistically,
family members raising concerns as to the condition of the relative. “What will happen to me?”
was a spontaneous reaction. Will I ever be discharged? Is this the end … of what?
In the meantime, at the proverbial “back at the ranch”, there was a household that required to be
managed, decisions that had to be taken on another person’s behalf. Was this still the best space
for her to return to? She could not stay in hospital forever. Would she be able to care for herself
or had the time arrived to consider moving to a caring facility? Dignity should prevail, decisions
should be passed. Who should be in command of these decisions?
The post box was growing in size as the medical bills were arriving. Not everything was covered by
the medical fund. As a “private” patient she was responsible for some of the costs.
The debit card was also marching on towards the red …
5. UNPACKING VULNERABILITY
The narrative suggests a number of themes associated with healthcare ethics and vulnerability.
The first observation is the fear instilled because of the unknown. The unknown is informed by
the new space, the newness of treatment, the rising cost of medical treatment and the well-known
question: What next?
A second interpretation is the observation that the organisation has become just as, or perhaps even
more, important than the patient. One cannot but observe a business-centred model in healthcare
– client and service provider. From a business perspective each party wants its rightful share.
The patient’s primary need is to be cured and cared for. The healthcare practitioner has rights and
needs too. He/she needs to be professional and to provide the best service that is possible but
this cannot be performed outside the context of the hospital, clinic or care facility. Pharmaceutical
companies want to make a profit (see for example Ten Have, 2011). A more progressive way
of dealing with these issues would be discussions on personal ethics, professional ethics (and
codes), legislation and what constitutes “good” healthcare. The observation is often made that
19
a fairly abstract view of healthcare ethics has emerged, and that this view should be promoted
and implanted without a discussion on what is really the basis for good healthcare. Verbruggen
(2013) promotes the view that healthcare practitioners should take charge of their profession and
should assist in framing a healthcare ethics guideline. The voice of especially the elderly should be
recognised in this debate. (See Vanlaere and Burggraeve’s contribution in Chapter 4 for a detailed
discussion on the quality of healthcare).
A third observation is that related to role play and responsibility. Who is in charge, and when?
Spanish philosopher Fernando Savater (2013) addressed the complexity of ethical decision
making and understanding. His book challenges the “good life” that everyone wants to live and still
be ethical. Ethics denotes our responsibility (commitment) towards other people. Following from
this, is the importance of appreciating people in their own right for who they are and not simply
as a means to meet one’s own goals. Of particular importance is the question of one’s personal/
individual rights versus those of the group. This takes us back to Plato’s The Republic, in which the
question concerning how we should treat other people is also posed. The answer is no different
from the evangelical answer: Do unto others as you would have them do unto you. This response
implies that man should be respectful of, and of service to, other people. This dictum (also known
as the Golden Rule) needs to be extended to a person’s interaction with culture, nature and
structure. A second problem is that aging of nature may demand medical and social intervention.
Medical intervention is necessary since the elderly may no longer be in a position to take care of
their own health. Social intervention may also be required to manage their broader interaction with
society and communities. These interventions create the impression that the elderly constitute
a “problem” group (Vens, 2013). The ethical challenge that emerges is the behaviour and/or
perception that elderly people need to be treated differently from other people. It is this relativism of
capability and dignity that leads to confrontation between the elderly and the community (collective
for other people). The elderly very often experience that their lives appear to have been taken over
by other people, or that other people are now deciding what is good for them and what not. This
leads to feelings of disempowerment and loss of autonomy. As if this is not enough, elderly people
very often also experience this disempowerment and loss of autonomy in the very way that people
treat them, communicate with them and involve them in decisions pertaining their own life. The
common assumption is that elderly people are now comparable to infants – they cannot make
any decisions.
A fourth comment relates to life view and orientation. Robert and Edmund Shidelsky (2013) rightly
indicate that each person longs for a good life, but how is a good life to be measured? Although
there is a tendency to equate a good life to a life in which one can afford what one needs and
wants, people are generally in agreement that this cannot be measured in financial terms alone. A
good life is nonetheless often the expression of a lifestyle associated with progress and prosperity.
20
In the postmodern world especially elderly (geriatric) people find it difficult to make peace with
the life that was and the life that they are now experiencing. The remembrance of the past often
contributes towards a growing vulnerability since many people, especially geriatric patients, find it
hard to accept that things are no longer the way they used to be. The most difficult aspect of the
vulnerability is the loss of competency and identity. One’s life has been taken over by others and is
now almost lived by others as if one has no say over one’s own life any more. It is for this reason
that the World Health Organisation pays special attention to the vulnerable – especially those who
cannot make decisions on their own behalf any longer. The emerging philosophy of slow living
is a development according to which food play an important role in challenging and changing
a materialistic lifestyle (see Honore, 2004). The concept of slow living questions materialism,
wellness, pleasure, values – in essence the ethics of how we live (see Parkins and Craig, 2006).
A fifth issue is the experience of a power relationship. The need for healthcare ethics is deepened
with science and technology that creates endless new opportunities for cure and care but at the
same time subjects healthcare workers and patients to control and power. A history of philosophy
reminds one that knowledge is power (R. Descartes), power destructs relationships (M. Foucault),
power is an ideology ruling human life (J. Thompson) and medical technology dominates healthcare
(J-H van den Berg, E. Schuurman). More recently, Ten Have (2011) has argued that it is thanks
to technological developments that healthcare practice has changed positively, while at the same
time it has generated new ethical challenges, most notably captured in bio-ethics. The conclusion
is simply that the power issue cannot be avoided in healthcare. The challenge is rather how best
the power can be balanced in order not to contribute to power distortion but to utilise power as an
enabler to address vulnerability.
The analysis of this narrative was intended to point out that care is not limited to the patient
only but that those who are involved in the areas of cure, care, control and community should
benefit mutually from each other’s care. The comment suggests that care is not one-way traffic,
neither is it reserved for one group only. Care should manifest itself in all aspects of healthcare.
It is not always health challenges that demand a deeper sense of healthcare ethics. Activities in
relation to healthcare also call for the practise of healthcare ethics. Most notably are the roles of
science, technology, pharmaceutical companies, health insurance, legislation, general healthcare
delivery and diversity of personal beliefs, convictions, culture and personal circumstances. Typical
examples are the ability (knowledge and skill) to identify illnesses for which medicine may not be
available or if available, not affordable; the fear of technology if one has never been exposed to even
basic technologies; the collapse of public medical services which leaves many patients helpless;
the inability to communicate if there is not a common language and the socio-cultural interpretation
and understanding of illness (see Creplet (2013)). The question remains as to whether the medical
staff, hospital management and community are focusing enough on vulnerability.
21
However, care alone is insufficient if it is not directed by a value system. Creplet (2013) and
Schotsmans (2012) rightly argue that it is time for all of these developments to be aligned with
values. If healthcare is more than patient cure and care only, and if healthcare ethics goes beyond
the needs of patients only, then we need to define healthcare ethics that can deal with the different
worlds in healthcare as well as with those developments and structures that have an influence on
healthcare.
Healthcare ethics is no abstract function but a deep human activity informed by life experiences,
expectations, view and current circumstances. It is for this reason that care must be imbedded
in a value system. To achieve this, one has to understand what the ethos of healthcare ethics is.
6. THE ETHOS OF HEALTHCARE ETHICS
Schotsmans (2008) claims that ethics has three tasks. Firstly it deals with human behaviour.
How do we behave towards others and towards societal institutions? Secondly it investigates the
application of norms and values and their challenges. Thirdly it assesses human behaviour in the
context of humanity.
From these tasks, three important markers can be identified:
■■ Regardless of the space or time frame, no person can live as if there are no ethical guidelines.
Ethics is no bourgeois concept applicable only to certain groupings in society.
■■ Ethics should not be limited to our engagement with people only, but should also have meaning
for human behaviour towards culture, nature and structure.
■■ Ethics should address injustice in society and it should contribute towards a responsible
lifestyle.
These markers can be further extended through the following comments. Emmanuel Levinas’
evoking of the other serves as a basis for interpersonal relations – no person can live as if he
or she is the only person alive (see Burggraeve 2008a for a provocative dialogue with Levinas’
ideas). Further, people discover themselves through engagement with others. The ethical pointer
is that the individual cannot be isolated from the group and the group or the other cannot isolate
themselves from the individual. What people do may impact on the group and/or the other and vice
versa. Burggraeve (2008b) pointed out in his analysis of Levinas’ ethics, that ethics is a matter of
recognising the “other” for who the “other” is. This recognition implies acceptance of the “other”
for who he/she is. The identity of the “other” is important to understand the person and to meet
the person on that basis.
22
Following from these comments as well as arguments presented in this chapter, the following
ethos for healthcare ethics can be provided:
■■ Ethics is more than the identification of an appropriate value and norm for a situation.
Ethics includes value-informed decision making, lifestyle and treatment. At the same time it
necessitates the support of change, transformation and growth in a person, support networks
and institutions. Ethics is primarily about the bringing of righteousness to a person and the
institution and the specific situation in hand.
■■ Although universally acceptable criteria exist for determining the beginning and end of life,
the mystery of what constitutes life can never be subjected to evidence-based criteria only.
Life is much more than merely a set of quantitative or qualitative physical criteria. Life is an
experience in the richness of human experience and existence.
■■ Regardless of religious, spiritual or cultural orientation and/or conviction, the universally

acceptable Human Rights Bill and approved global medical codes should be regarded as
baseline for healthcare – both for the providers and recipients of cure and care.
■■ Ethical care is firstly directed at the human, before it is directed at the condition. It happens too
often that the condition is addressed without recognising the person with the condition. The
human being can never take the second position when care is required.
■■ Medical practice can never waive the basic principle of the “Golden Rule” – do no harm and
do to other as you expect others to do to you. This will demand dignity for all – immaterial of
the fact that one provides cure or care or receives cure or care.
■■ Regardless of the status of the patient or of who the cure- or caregiver is, no discrimination
can be permitted. Although special interest for vulnerability and people in vulnerable
circumstances are demanded at all times, this does not mean that there are circumstances
that allow inequality towards other people in different circumstances.
■■ Vulnerability is a human experience and condition, whether ethical, physical, psychological,

economic, environmental or cultural. As a result every person depends on other people’s
understanding of his/her vulnerability and hence care. In a medical context it is about caring
for life, health, state of mind and general well-being.
■■ When dealing with ethical judgement, it should be remembered that no two cases are the
same. An ethical baseline is that each case is unique and should be treated on the basis of
the situation informing the case.
■■ Change is always aimed at improvement but never at the makeover of a person. Whether
health cure and –care provider and/or recipient, the purpose of ethical guidelines is to guide
the person to get as close as possible to the “ideal” situation. The objective of ethics is to
23
show the ethical way out of a dilemma and to further guide a person to understand and
experience what ethical alternative could be available.
■■ Vulnerability is a human experience – hence it depends largely on the ethical frameworks of

other people which in turn inform their mercy, gratitude and respect towards another human
beings and social institutions.
■■ The delivery of quality, respectful and supportive care can never be removed from the care that
the vulnerable are in need of. It would be hard to justify care without quality service delivery.
■■ Care can never be limited to humans only – part of ethical care is also to respect social
institutions. As institutions are very often the basis for service delivery these institutions are
subject to sound ethical behaviour too.
The comments offered in this section of this chapter may form the basis for some of the discussions
in the chapters to follow.
7. SUMMARY
This chapter has highlighted the complexity and multi-perspective approach associated with
vulnerability in healthcare ethics. From the many perspectives provided it was evident that
vulnerability can be experienced in different aspects of human existence.
This chapter looked into what constitutes vulnerability and confirmed that vulnerability is not an
experience of the patient only, but that the health cure and -care practitioners also experience
vulnerability. It was also stated that vulnerability can be extended to social institutions (such as the
hospital and clinic) or the community (family, friends and support) networks too.
This chapter concludes by identifying the ethos of healthcare ethics. The ethos was identified on
the basis of what ethics is, the meaning thereof for human behaviour in a medical context, the
application of ethics to care and service, and the argument that healthcare ethics has application
for humans and social institutions.
8. LITERATURE
Badaracco, J.L. 1998. Business ethics: roles and responsibilities. St Louis: McGraw-Hill.
Burggraeve, R. 2008a. (Ed.). The awaking to the other: A provocative dialogue with Emmanuel Levinas.
Leuven: Peeters.
Burggraeve, R. 2008b. Als ik de ander erken, ken ik de ander. In Guwy, F. (Samenstelling en redactie). De
ander in ons. Emmanuel Levinas in gesprek. Een inleiding in zijn denken. Amsterdam: Sun.
24
Creplet, J. 2013. De derde revolutie in de geneeskunde. Brussel: Pharma.be.
Holtzer, L. 2015. De 7 privleges van de zorg. Leuven: Acco.
Honore, C. 2004. Slow: Een wêreldwije revolutie. Rotterdam: Lemniscaat.
Gastmans, C. & Dierick, K. 2004. Ethiek in witte jas. Zorgsaam omgaan met de leven. Leuven: Davidsfonds.
Glouberman, S. & Mintzberg, H. 2001. Managing the care of health and the cure of disease. Part 1:
Differentiation. Health Care Management Review. Winter 56-69.
Lategan, L.O.K. 2002. Teaching business ethics: how effective are case studies? An illustration from
Badaracco’s business ethics: role and responsibilities. In Lategan, L.O.K. and Le Roux, P.G. (Eds). Business
Ethics. Bloemfontein: Tekskor. 102-120.
Parkins, W. & Craig, G. 2006. Slow living. Oxford/New York: Berg.
Phalime, M. 2014. Postmortem: The doctor who walked away. A true story. Cape Town: Tafelberg.
Remans, J. 2005. De boom van goed en kwaad: Over bio-ethiek, biotechniek, biopolitiek. Leuven: Acco.
Republiek van Suid-Afrika. 1975. Aborsie en sterilisasiewet. Wet 2 van 1975. Pretoria: Staatsdrukker.
Savater, F. 2013. Ethiek Nu! Een filosofie voor het moderne leven. Utrecht: Bijleveld.
Schotsmans, P. 2008. Handboek medische ethiek. Tielt: Lannoo.
Schotsmans, P. 2012. In goede handelen. Tielt: Lannoo.
Shidelsky, R. & Shidelsky, E. 2013. Hoeveel is genoeg? Verlange na een goed leven. Antwerpen: De bezige bij.
Ten Have, H. 2011. Bioethiek zonder grenzen. Mondialisering van gezondheid, ethiek en wetenschap.
Nijmegen: Valkhof Pers.
Van den Berg, J-H. 1969. Medische macht en medische ethiek. Nijkerk: Callenbach.
Vanlaere, L. & Gastmans, C. 2010. Zorg aan zet. Ethisch omgaan met ouderen. Leven: Davidsfonds.
Vanlaere, L. & Burggraeve, R. 2013. Gekkenwerk: Kleine ondeugden voor zorgdragers. Tielt: Uitgeverij
LannooCampus.
Vens, E. 2013. Ouderen en zorg. Een verkennend antropologisch perspectief. In Van Kerckhove, C., De Kock,
C. and Vens, E. (Eds). Ethiek en zorg in de hulpverlening. Over taboes gesproken. Gent: Academia Press.
31-41.
Verbruggen, A. 2013. Over de verhouding tussen beroepsethiek, deontologische codes, wetten en een
‘goede’ beroepsuitoefening. In Van Kerckhove, C., De Kock, C. and Vens, E. (Eds). Ethiek en zorg in de
hulpverlening. Over taboes gesproken. Gent: Academia Press. 159-168.
World Health Organization, 2007. New health threats in the 21st century (Chapter 3, pp. 34-43). Geneva: WHO.
25
CHAPTER 3
The difference between
right and wrong
Gert J. van Zyl and Paulina van Zyl

The difference between right and wrong
1. INTRODUCTION
There is a universal expectation for everyone to know what is right and what is wrong. Such
expectation when related to moral decision making is embedded in the value systems of rational
and functional individuals and communities. Society at large plays an important role in defining
what the right or wrong thing to do is. Yet, we all believe that we have an intuitive sense of what the
difference between right and wrong is.
2. PHILOSOPHICAL ASPECTS OF MORALITY
Moral intuition implies that we have a sense of what is right and what is wrong that is independent
of other senses. But is this really the origin of our moral judgment? The question as to whether the
concepts of right and wrong emanate from an individual’s objective intuition or subjective feeling
or attitude has been debated by many scholars of philosophy (Foot, 2002a:3-5).
Another subject of contention among philosophers regarding right and wrong is whether you can
or cannot define the two terms. Stevenson concluded that the terms right and wrong have several
interpretations, based on the context of the argument (Stevenson, 2002:29). Also, it differs among
individual perspectives and even across time in the same person. In the context of judging between
right and wrong, the person in question uses multiple beliefs to settle on a specific personal
attitude that may also influence the attitudes of others. Moore (2002:34) argues that it is not
possible to define goodness, which is not a natural entity, in terms of natural attributes.
The Concise Oxford Dictionary (Sykes, 1982:897) has no problem with defining right and wrong
and defines “right” as “just’; “morally good”; “required by equity or duty”; “proper”; “the opposite
of wrong” – “adding natural inclination to face what is right”; “correct”; “true”; “the preferable”; or
“most suitable” – “this less wrong are often not wrong”. “Wrong” is defined as “bad or abnormal
condition”; “contrary to the law or morality”; “treat unjustly”; “bad motives”; “injustice, contrary to
the law”, “not entitled to position” (Sykes, 1982:1246).
3. DEVELOPMENTAL ASPECTS OF MORALITY
From a developmental psychology viewpoint, morality develops in an individual through well-defined

stages linked to physical development, graded in six discrete phases according to Kohlberg’s
theory of moral development (Kohlberg, 1971:online). In young children, direct consequences for
the individual concerned drives decision making. This phase is called the pre-conventional phase
and consists of two levels: decision making in individuals in level 1 is driven by obedience and
punishment, while level 2 individuals seek to satisfy self-interest. During adolescence and young
adulthood (conventional phase), decisions are driven by social norms (level 3) and law and order
28
(level 4). In the post-conventional phase (principled conscience) decision making is led by social
contract (level 5) and universal ethics (level 6) (Kohlberg, 1971: online).
4. THE MORAL IMPRINT OF SOCIETY
Moral judgment does not develop in isolation; it develops in an individual through the interaction of
innate empathy and the influence of formative societal values.
■■ “Don’t do that!”
■■ “Don’t touch that!”
■■ “Yes, you may take some of those.”
■■ “Share that with somebody.”
We all were exposed to this kind of instruction as children. Some of these phrases might have been
the very first instructions that we can remember being exposed to. This early guidance created a
unique internal environment for us as well as the framework for deciding what is right and what is
wrong. The foundations of this cultural imprint are laid by our parents, whose ideas of right and
wrong were in turn shaped by the ideas of their parents and those of the community in which they
lived. As we are increasingly exposed to the social network of our parents, religious environments
and school environment, our sense of right and wrong is moulded to match the expectations of
the larger community. Finally, operating within a work environment and as an adult member of a
society, it is expected of individuals to be able to know instinctively what is right and what is wrong
in both familiar situations and on issues that may have no precedent.
In essence, then, morality is the imprint of societal values on the individual, expressed through
behaviour. The imprint may be weak or strong, an individual may have more or less empathy, and
different societies leave different imprints.
The coming together of individuals from multiple backgrounds in the workplace challenges the
limits of the imprint of morality developed in the first classrooms of life, complicating decisions
concerned with the issues of right or wrong. The strong influence of cultural and religious
background often dictates the status of individuals and thus the range of interactions that is
allowed or prescribed between individuals of different groups.
5. REASONING ABOUT RIGHT AND WRONG
In order to transcend the restraints of cultural diversity in determining right and wrong, we need to
understand how we reason in order to decide between issues of right and wrong. At the same time
29
we need to be able to apply such judgement to everyday problems, and also beyond the mundane
in uncharted territories.
5.1 Frameworks of moral judgment

Morality is expressed through value judgments, selecting between options. The primary elements
to consider in seeking the greater good are the value judgments between truth and falsity; good and
bad and ultimately, right and wrong. Good and right are generally seen as related and overlapping
concepts; the same applies to the counter weights, bad and wrong. Telling the truth, for instance,
is generally considered good and right, yet measured by the consequences might in fact turn out to
harm someone. Telling the truth might in some instances be bad. Gossiping or leaking confidential
information may be true, but harmful and therefore bad. It is therefore possible that these forms of
judgment might be in opposition to each other. An important aspect of these value judgments is
that they each form a continuum. It is easy to distinguish between absolutely right and absolutely
wrong, but increasingly difficult as alternatives move towards a midpoint where the issues become
mingled and less clear. For the sake of clarity, let as view the sets of value judgements as separate
“scales” of judgement.
As for “truth” and “falsity”, the deciding factor on which the continuum is balanced, is the presence
of evidence (Foot, 2002b:83). Facts determine the outcome of judgment between these poles.
“Good” and “bad” can be seen as “emotives”: terms of commendation or rejection based on
personal preference, aimed at promoting a certain behaviour (Foot, 2002b:84). Geach (2002:65)
argues against this notion, and proposes that good or bad should be seen as descriptors, but not
necessarily in the frame of commendation. The characteristics of “good” depend on the nature
of what is described. If a “good” book fulfils the reader’s criteria for good books, it is lacking
in being a “bad” book. In the absence of the requirement of evidence, good and bad remain
highly subjective judgments. “Good” however differs substantially from “red” or “sweet” and
is consequently classified as a “non-natural” descriptive term by some philosophers, although
rejected by Geach. The difference in the nature of these descriptive terms is however undeniable.
“Good” and “bad” are abstractions, imaginary labels that are attached to an entity after completion
of a process of value judgment.
“Good” can be also be placed opposite “evil”. Geach (2002:64) does not distinguish between bad
and evil. If we consider these terms as opposites on a judgment scale though, good-evil represents
a different scale of judgment from good-bad. The good-evil scale imposes a different moral belief
system to the judging framework. Evil infers intent to harm and good on the same scale the intent
to confer beneficence.
30
Let us consider “right-wrong” as a scale for moral judgment. “Right” and “wrong” are concerned
with the foreseen outcome of actions, according to J.S. Mill (Urmson, 1953:34). The test for the
“right” option is whether it promotes the ultimate objective, but also how effectively it does so. In
his dissection of Mill’s moral philosophy, Urmson (1953:34) points out that Mill did not simply
try to give definitions for right and wrong, but rather aimed at determining how to distinguish
between these two moral poles. Such distinction is based on the guideline that an action is “right”
if it complies with a “moral rule”. The moral rule in turn is right if it leads to the intended goal,
the summum bonum or “greater good” which Mill defines as “happiness”. However, such “moral
rules” are not the sole scale of judgment and their application is only appropriate in issues with
substantial consequences (Urmson, 1953:35).
But whose happiness should be declared the ultimate goal? Mill’s test for right and wrong does not
get rid of the subjectivity of the right-wrong scale and judgment remains prone to highly diverse
interpretation, influenced by demographics, traditions, cultures, social status and religion.
5.2 The challenge of multi-cultural settings and universal values

In multi-cultural settings, diverse backgrounds create a challenge for making moral decisions. The
subjective nature of value judgments and the major cultural component thereof of course pose a
special challenge to multi-cultural settings or fields. Hence, the need arises to create a common
code of conduct that incorporates or supersedes this diversity.
It is here that the concepts of values and ethics enter the discussion. Values are prioritized criteria
or principles guiding choices, aimed at arriving at reaching a particular goal (Schwartz, 2012:3-4).
Values are similar to norms in that both designate a set of societal rules guiding behaviour. Norms
are the unwritten codes of conduct of societies, through which the society moulds the behaviour of
individuals to convention. Values are the expression of the belief system of an individual regarding
how to behave in order to reach a desirable goal or fulfil the needs of society. Schwartz (2012:4)
reasoned that individual values represents the cognitive expression of the needs of societal groups:
biological and survival needs, social interaction, and welfare needs. Defining these values aims at
transforming abstract cognitive processes with unconscious execution into concrete entities with
conscious execution. Ten universal values salient to all cultures were identified and integrated into
the Schwartz theory of values (Schwartz, 2012:5). Schwartz defined these values in terms of the
broad goals that they represent as: power (social ranking and dominance, based on the inherent
hierarchical structure of societies), achievement; hedonism (enjoyment of life); stimulation; self-
direction; universalism; benevolence; tradition; conformity; and security. This theory identifies the
underlying motivations for these universal values as self-enhancement vs. self-transcendence;
and openness to change vs. conservation (Schwartz, 2012:5).
31
Schwartz (2012:3-4) describes the characteristics that all values share, including that they
represent beliefs linked to emotion, that they are directed at outcomes and that they apply to
a multitude of situations. The latter characteristic distinguishes them from attitudes which
have a narrow application tied to specific situations. The opposing nature of some values,
necessitates prioritisation.
Gillon (1985:1118) defines ethics as a critical and analytical activity that judges the assumptions,
underlying concepts, attitudes, reasons, arguments and approaches to the moral decision making
process. Healthcare ethics is already defined as the identification of principles and the application
of values and norms informing the practice of healthcare. It aims to transform a situation and to
bring about a change in attitude, behaviour and practice (cf Chapter 1, paragraph 3). Ethics then
can be said to study values, the building blocks of morality, the innate sense of right and wrong of
individuals, and to formalise common codes of conduct. It implies a disciplined behaviour aimed
at harmonising and streamlining interaction between humans, but also guiding human conduct
towards the environment, animals and future generations. It can be seen as the formal expression
of the morality of a societal structure that frames the decision making process.
Landman (2010) explains that healthcare delivery is in essence an ethical issue where ethics is
about our (my) living according to core values in relationship with others. He continues by asking
the question of whether universal values do actually exist, and explains that these must be seen
in the context of the fact of cultural relativity of values (descriptive). He continues by saying that
universal values originated in history and that these values show us how we ought to live in a good
and just society (prescriptive) (Landman, 2010).
The need for negotiated codes of conduct arises within societal structures, when people from
different backgrounds need to interact. The purpose is to guide individual behaviour in the interest
of the collective. In the workplace, ethics encompasses issues of resisting exploitation of power in
relationships, such as bullying or sexual harassment; of maintaining trust and good faith by being
honest and open, balanced with appropriate discreetness; of being committed to the greater good
in protecting discipline and good order and protecting the company’s interests. Such a code of
conduct is made up of values. Values are the cumulative beliefs that direct the choices humans
make. Moral values specifically guide moral decision making. Landman (2015) indicates that there
are certain parameters that need to be taken into account in the debate on assisted dying within a
constitutional democracy. The public policy should, in his view, reflect the spirit, values and rights
of the Constitution.
32
6. RIGHT AND WRONG AND THE MEDICAL PROFESSIONAL
Ethics are particularly applicable to the professional practice of medicine to guide decision making
in the doctor-patient relationship, protecting self-directedness for the patient in an essentially
unequal power relationship. The maintenance of the reputation of the individual practitioner and the
medical profession as a whole are important considerations.
The Hippocratic Oath represents one of the oldest known attempts to voice universal goals for
the medical profession. Pope John Paul II remarked to the World Medical Association in 1984
(Pope John Paul: 1984): “It is more than ever necessary to overcome the separation between
science and ethics, to rediscover the profound unity. It is man that you treat, man whose dignity is
protected by ethics.” It is the specific references to treatment and patient that makes this statement
more important for doctors. Yet, it is the reference to human dignity and the imperative to protect
human dignity that reiterates a universal goal stated in the Hippocratic Oath.
Since the time of Hippocrates, however, fundamental changes have occurred in societal values
and even in the understanding of concepts like “the common good”. Unprecedented change has
occurred in healthcare service delivery that could not have been foreseen by the ancient philosopher.
These changes have profoundly and irreversibly affected the dynamics of the relationship between
medical professionals and their patients. Society no longer accepts treatment without questions
asked. It also does not regard medical professionals as having the authoritarian status that they
had in former times.
Historically important as the original source of ethical codes and guidance for conduct of medical
professionals and a common commitment, the Oath is however a subjective expression of values
and entrenched in a particular historical setting.
The past two decades have seen a renewed interest in the search for common ethical standards
in healthcare delivery. The changing world of medicine requires a novel appreciation of the needs
of society and a new contract with society. The World Health Organisation (2002:19) declared
that one of the main issues that need to be addressed to meet societal needs and expectations is
the provision of leadership in ethical aspects of health. Van Zyl (2004: 141) quotes Leaming who
admonishes us to remember that a faculty member is not necessarily wrong just because he/she
sees things differently and behaves differently from the way somebody else will do. It is therefore
not just about the ethics but also about the action.
PriceWaterhouseCoopers (1999) emphasises an increasing need for healthcare organisations to

take into consideration the needs of the populations they serve in the face of changes in the
healthcare environment, such as increased competition between providers for patients and capital,
the emergence of e-businesses, a shift towards preventative medicine, globalisation and the need
33
for cost-effective health services. Medical professionals therefore need to work towards global
standards of medical treatment.
The principles of beneficence, avoidance of harm, respect for autonomy and justice are the formal
principles of bio-ethics as formulated by Childress and Beauchamp in 2001 (Lawrence, 2007:34).
These became the guiding principles for ethics in medical research and bio-ethics in general.
Beneficence refers to the duty of a medical professional to provide help. This principle is however
subject to the principle of autonomy: the physician needs the patient’s permission to intervene.
The principle of non-maleficence indicates the duty of the physician to avoid harm. Justice refers
to the fair distribution of limited resources and respect for personal rights and laws (Lawrence,
2007:35-36).
Strauss (1991:5) comments that it is a universal and primary duty of doctors to take care during
the treatment of a patient – performing operations and procedures – to execute these activities with
such professional skill/s as to avoid injuring the patient. If the doctor fails in this, a civil wrong has
been committed, making the doctor liable and potentially leading to prosecution. Although there is
no legal duty in general upon a doctor to take in a patient, the counter argument is also applicable
where doctors do not get the automatic right to treat any patient.
Another interesting apparent contradiction arises between the universal values of “power”, which
includes “respect for authority”, and “self-direction”, which includes a goal like “freedom”. Also,
the latter term may be simplistically interpreted as meaning that you can do as you wish without
consideration of right and wrong, in which case it becomes contradictory to the notion of following
ethical rules in the first place.
Freedom, however, within a framework of values and ethics, remains subject to the ultimate goal of
the greater good. In the context of bio-ethics, it is expressed in the exercise of choice and allowing
choice in the first place.
These examples demonstrate the potential conflict that may arise within a value framework and
underlie the importance of prioritising principles.
7. PROFESSIONALISM AND THE HEALTHCARE DELIVERY SYSTEMS
The Physician Charter on Professionalism was published simultaneously in Annals of Internal

Medicine, The Lancet and the European Journal of Internal Medicine in 2004 (ABIM Foundation,
American College of Physicians Foundation and the European Federation of Internal Medicine).
The charter represents the efforts of major role players in the medical community and Sox (2002)
remarked that it was a watershed event (Sox, 2002). It was started in order to revive sensitivity
34
for medical ethics in response to a sense that Healthcare Delivery Systems in the United States
and elsewhere increasingly threaten medical ethical values. The charter is based on the premise
of professionalism as the common platform through which the expectations of societies and
reciprocal needs of the medical profession can be formalised.
Professionalism is expressed in occupations whose core element is the performance of work that
is based on the mastery of a complex body of knowledge and skills. Such professions, seen as
vocations, are practised in the service of others, by practitioners who are accountable to society for
their actions. Its members profess a commitment to competence, integrity, morality and altruism
and the promotion of the public good within their domain. In exchange for these commitments to
society, the profession gains the right to self-regulate and make their own decisions in practice
(Van Zyl, 2002:11).
Physicians serve two simultaneous roles in society: that of healer and that of professional. A code
of ethics is central to both of these roles and the medical profession derives values from the healer
as well as from the professional. Attributes gained from the professional include issues like self-
regulation and team work, while attributes from the healer involve patient care and the caring ethos
(Van Zyl, 2002:11).
The contract between the medical profession and society thus hinges on professionalism. The
charter is based on three fundamental principles, namely: the primacy of patient welfare; patient
autonomy; and social justice.
Contemporary characteristics of the medical profession and the obligations required to sustain
professionalism include the complexity of the knowledge base, service, altruism, autonomy,
professional associations, accountability, morality, integrity and codes of ethics.
The charter further defined a set of commitments that are essential to health ethics and pro
fessionalism (ABIM Foundation, American College of Physicians Foundation and the European
Federation of Internal Medicine, 2004) These commitments are honesty; confidentiality;
maintaining appropriate relationships with patients; to uphold scientific knowledge and professional
responsibilities; improving care and access to care; fair distribution of resources and maintenance
of trust. The main areas of the Charter are shown in Table 1.
35
TABLE 1: THE PHYSICIAN CHARTER ON PROFESSIONALISM IN SUMMARY
1. Commitment to honesty with patients which includes:

• informing patients completely and honestly before and after treatment;
• empowering patients to participate in decisions affecting their health;
• disclosing fully and promptly all medical errors.
2. Commitment to patient confidentiality:
• Adhere to all safeguards governing this disclosure of patient information.
• Disclose confidential information only when consideration of public interest overrides the
interest of privacy.
3. Commitment to maintaining appropriate relations with patients including:
• recognising inherent vulnerability and dependency of patients; and
• never exploiting patients for sexual advantage, personal financial gain or any other private
purposes.
4. Commitment to scientific knowledge which includes:
• upholding scientific standards;
• promoting research to create new knowledge;
• ensuring appropriate use of scientific information.
5. Commitment to professional responsibilities:
• Participate in the processes of self-regulation.
• Assist in establishing educational and standard-setting activities.
• Accept external scrutiny of professional performance.
6. Commitment to improving quality care which includes:
• working collaboratively to reduce medical errors, increase patient safety and minimise
overuse and optimise outcomes of care;
• helping to develop and implement better measures of quality healthcare.
7. Commitment to improving access to care:
• Strive to reduce variations to equitable healthcare.
• Promote health of the public without concern for self-interest.
8. Commitment to adjust distribution of resources:
• Base individual patient care decisions on cost-effective management of limited resources.
• Work collaboratively to develop clinical guidelines.
• Scrupulously avoid superfluous tests and procedures.
9. Maintain trust by managing conflict of interest:
• Recognise the existence of many opportunities to pursue private gain.
• Prepare to resist temptation and disclose all conflict of interest involving professional
activities.
36
Adapted from: Medical Professionalism in the New Millennium: A Physician Charter (ABIM Foundation,
American College of Physicians Foundation and the European Federation of Internal Medicine: 2004).
1. PROFESSIONALISM IN MEDICAL EDUCATION
The World Federation for Medical Education (WFME) represents all medical teachers and medical
teaching institutions and it undertakes to promote high scientific and ethical standards in medical
education, initiating new learning methods, new instructional tools and innovative management of
medical education. It sets the purpose to provide a mechanism for quality improvement in medical
education in a global context to be applied by institutions responsible for medical education
(World Federation for Medical Education, 2003:3). Ethics and the teaching of ethics in a medical
curriculum play an important role. Therefore the position of the WFME is important when one talks
about ethics, because it is these positions of ethics that are taught. This organisation acts as an
umbrella organisation, with partnerships with regional organisations such as AMEE (Association
for Medical Education in Europe), AMSA (Association of Medical Schools in Africa) and PAFAMS
(Pan American Federation of Associations of Medical Schools), among others.
AMEE presents a bi-annual conference, called the Ottawa Conference. The Ottawa Conference of
2002 presented the Physician Charter on Professionalism as an important guideline for application
within medical education. The objective of the conference was to have a curriculum which includes
the teaching of professionalism to ensure that students and residents know the meaning of
profession; have adequate background on the historical development and present status of the
profession; and know the attitudes and behavioural patterns characteristic of professionalism.
The conference identified life-long professional development and the maintenance of competence
as critical to the application and teaching of ethics in medical education.
In practical terms: faculty development is essential prior to the introduction of expanded

programmes or teaching professional evaluation. Faculty workshops provide effective strategy,
and they should have as objectives increasing core knowledge of professionalism and producing
more effective role models. The basis of all teaching must be a knowledge of the definitions of
profession and the attitude and behavioural patterns characteristic of professionals. These issues
are still relevant today.
Role models are still the most effective means of promoting professional values. Individuals
serving as role models should demonstrate the following:
■■ Commitment to personal and professional excellence
■■ Enthusiasm
■■ Effective communication with patients, peers, students, residents and staff
37
■■ Integrity
■■ Clinical competence
■■ Altruism
■■ Respect for the dignity of colleagues, patients and members of allied health professions
■■ A balanced lifestyle (Van Zyl, 2002:12).
Professionalism should be an integral part of the orientation sessions of all new faculty members.
The professionalism of faculties should be evaluated as part of their ongoing performance
assessment. Core knowledge about the profession and professionalism should be presented
in a structured way early in the curriculum. It should include a definition of profession and
professionalism that is in turn linked to the value systems of medicine. It should be presented
in a historical context so that the student knows how the profession arrived at its present state.
The charter of medical professionalism can serve as a resource representing a set of universally
acceptable principles and values (Van Zyl, 2002:13).
Professionalism should be integrated into bedside teaching, emphasising both professional and
unprofessional attitudes. Under some circumstances, professionalism can be combined with ethics
teaching while recognising that it is a subject linked to but separate from ethics. Community-based
clinical projects can reinforce this emphasis.
For internship, community-based rotation and postgraduate training, the core material relating to
the nature of professionalism should be part of structured residence education as a formal part
of training and assessment. A good example is in the M Med programme at the University of the
Free State where this is part of the formal curriculum. Issues related to professionalism should be
incorporated on a regular basis into bedside teaching, and can be combined with ethics teaching
where feasible. The participation of residents should be mandatory and some self-regulatory
activities such as reflections on ethics and communication are cornerstones to the training. As
part of professional responsibility, residents should be required to participate in clinical teaching
including the teaching of ethics to junior colleagues.
The charter also can serve as an organisational framework for professional portfolios and a
blueprint for the designing of certification and re-certification. This is potentially a very useful tool
for medical schools (Van Zyl, 2002:16). In the table below, Rice and Upson (2003) refer to the role
of respect and integrity that needs to be demonstrated by the actions of individuals, groups and
organisational leaders.
38
Table 2: Actions reflecting on respect and integrity

Principle action Actions contributing Actions contributing Actions contributing
demonstrating through individual through groups through
respect and effort organisational
integrity leaders
• Demonstrates • Builds trusting • Recognises • Holds managers
respect for all relationships with the value and accountable to
individuals others contribution of all high standards
• Adheres to • Values people’s team members of treating others
ethics, shared differences in through words and with respect and
values, business background, actions valuing differences
practices of the culture, pursuit of • Takes responsibility throughout the
organisation work and personal for the behaviour of organisation
• Demonstrates life balance and his/her department • Makes broad-
courage of perspective or team based business
conviction • Acts in accordance • Enforces high and organisational
with organisation’s standards of ethical decisions that
ethical principles conduct support our
• Takes a stand • Acknowledges shared values
for what he/she the ideals and • Demonstrates
believes in convictions of respect for
others at all levels neighbours and
local communities
Adapted from: Table on actions reflecting on respect and integrity (Rice and Upson, 2003)
2. CONCLUSION
We have described how differences in upbringing, culture and religion could lead to different moral
judgments in different communities and even between individuals in the same community. While an
inherent conflict about decisions on right and wrong may drive individuals to refine the expression
of moral behaviour in their personal lives, the diversity of the modern workplace complicates
decisions concerned with the issues of right or wrong. Hence the need to change from decision
making based on individual concepts of right and wrong to a distinguishable set of values and
practices that we call ethics.
Ethics is the formal expression of values that a profession or business or other societal structure
selects and prioritises to ensure a particular standard of moral decision making and to protect
39
their reputation. It is ethics that transforms the subjective nature of right and wrong to an objective
measure of moral behaviour.
As society becomes increasingly complex, ethics develops and its application expands. Wilson
and McLaughlin (1984:333) quote Gardner as saying the following about moral order:
“The moral order is not something static…it is an attribute of a functioning social system.
As such it is a living, changing thing, liable to decay and disintegration as well as to
revitalization and reinforcement, and never any better than the generation that holds it in
trust. Men and women who understand this truth and accept its implications will be well-
fitted to renew the moral order – and to renew their society as well. They will understand
that the task of renewal is endless. They will understand that their society is not like a
machine that is created at some point in time and maintained with a minimum of effort;
a society is being continuously recreated, for good or ill, by its members. …but it will
summon other to greatness.”
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42
CHAPTER 4
The quality of healthcare:
A care ethics approach
Linus Vanlaere & Roger Burggraeve

The quality of healthcare: A care ethics approach
1. THE ATTENTION TO QUALITY OF CARE
In healthcare today, more emphasis is given to the quality of care than ever before. Hospitals and
other care institutions want to guarantee the safety of patients, so they focus on quality systems
that are intended to achieve this safety. There is a great increase in practices that are intended to
improve the quality of healthcare.
The question that arises however is: what is quality when it comes to healthcare? Is it merely a
question of the safety of patients, or does it involve more than this? We will reflect on this question
in this contribution. We take a specific framework, namely that of care ethics, inspired by the
‘dialogical anthropology’ of Buber, and particularly Levinas1, as our point of departure. On the
basis of this approach, it becomes clear that quality not only demands an increase in carefulness,
with its objective means and methods, but also an increase in caring, with its subjective attitudes
and virtues. What does this approach to quality mean in a healthcare system that is in every
respect characterised by shortage, namely by lack of time, people and means? It is important for
care ethics that the healthcare organisation make it possible for the professional to be more and
more in a position to implement the available “means” – to be understood here as services and
goods – for what is most important for the patient.
2. NO MANAGEMENT, NO CARE ETHICS
Let us first look at what characterises care ethics. This fairly recent trend in ethics is more than the
sort of ethics that is concerned about care issues. Care ethics offers its own perspective on care
issues by taking the position that care itself is a practice that is ethically charged in every respect.
To put it in Carlo Leget’s (2009:110) words: care ethics “… seeks to understand how healthcare
works by looking at it from a particular perspective”.
Considering care from the perspective of care ethics means in the first place looking at the
relationships and at the way in which people give shape to their responsibility for each other (or
how they withdraw from it) (Van der Hoven, Kanne & Mol, 2003). Care ethics focuses on the
extent to which people are involved with each other. Secondly, care ethics always considers the
way in which the provision of care is influenced by the context (Van der Hoven et al., 2003), in
other words, the specific patient who entrusts him/herself to the professional caregiving in the
here and now, and what is at stake for the person from the point of view of care provision. Thirdly,
care ethics pays special attention to the vulnerability of the person. Care is only good care when
1 For an in-depth discussion of this ‘dialogical anthropology’, see: E. Levinas, 1998. Dialogue’ in: ID., Of God Who Comes
to Mind, Stanford, CA: Stanford University Press, pp. 137-151. Cf. also: R. Burggraeve, 2009. Proximity with the Other. A
Multidimensional Ethic of Responsibility in Levinas, Bangalore (India), Dharmaram Publications; P. Atterton, M. Calarco,
& M. Friedman (eds.), 2004. Levinas and Buber. Dialogue and Difference, Pittsburgh, PE, Duquesne University Press.
44
the care provision is tailored to what is most important for the patient (Baart & Grypdonck, 2003).
This is usually not discernible through, for example, a questionnaire or check-list. Tuning in to
the patient’s priorities demands an attentive attitude on the part of the professional (Grypdonck,
2013). At the same time, it also demands a continuous weighing up of the situation. Professionals
may then be sensitive to the vulnerability of the care receiver, and should notice what is at stake
for the person, even though they may be limited in the time and space available to actually respond
to this adequately.
Grypdonck (2013:13) remarks that “[t]he scarcer the means, the more attuned to the needs one
needs to be”. She indicates by this that care can only be good care if the scarce means are used
as efficiently and as usefully as possible. At the same time, the good that can be present in care is
always more than “useful” or “efficient” (Legget, 2009:110). From a care ethics perspective, these
two latter categories do not have a value in themselves. They do however form part of the care
ethical assessment that professionals have to make because, unless the best way to implement
the available means is sought for, in a way that is tuned to what the patient needs, one cannot
speak of being attuned to what is needed (and therefore one cannot speak of good care). Good
care means seeking what is the best and most humanly attainable care in a particular situation
(Burggraeve, 1994:73-94).
Care ethics is, from this perspective, not possible without management. As Grypdonck (2013:13-14)
rightly observes, much of the failure in healthcare is not the result of wrong decisions on the part
of the management. It seems to be the practice today to point a finger at the management of care
organisations as the creators of such failure of which professionals and consequently the patients
are the victims.
This polemic of “perpetrator” and “victim” often does not tally with reality and may have as a
consequence that people can wallow in the role of victim by using the management as an excuse
for not doing what should and could be done. Both the professional as an individual, and the
management are called upon to take up their responsibility. For the professional this means “doing
their best to use the available means in such a way that they contribute as much as possible to
doing justice to their patients’ and resident’s needs” (Grypdonck, 2013:14). For the management
this means organising the care in such a way that the professionals are in a position to take their
responsibility as seriously as possible and to carry out their responsibility as well as possible.
When care ethics only represents the responsibility of the professionals for their patients and not
the responsibility of the management for the organisation of the care as well, then it fails to achieve
its objective. It is not possible to offer care independent of the system. The care organisation is in
itself a sort of ethical correction in healthcare. It is not only a question of any particular patient who
requires care: there is always another one, and yet another one, and so on, in the here and now
45
and at the same time. This multiplicity of simultaneous care seekers demands both ethical and
practical organisation. This has to take place in a reasonable and just way that allows care seekers
to be similarly and equally treated. The exclusiveness of one-to-one care must be moderated
and brought into balance with what the “other others” need. In the simultaneous plurality of care
everything needs to be weighed up, urgencies and priorities need to be identified and formulated
in such a way that people are treated “as every other”. This demands organisation, structure,
consultation and agreements, or to put it succinctly, it requires proper management. Caring has
to become carefulness. If caregivers, on the basis of their caring, only listen and respond to the
needs of the one unique other, then they are being unjust, not from ill-will but from a good-will point
of view, to the real, present others. In this way, what is good is converted to its opposite...unless
caring is transformed into a well-thought-through and reasonable approach and direction. The
care organisation itself, the management and by extension the care policy at the level of society
is confronted with the challenge of providing a just distribution of means, goods and services, to
stand as far as possible for a correct assessment of the real care needs and, last but not least, to
meet these needs as practically and as adequately as is possible, in a context of comparative and
distributive justice searching for fair and equal treatment (Levinas, 2006:198-199).
3. PARADOX 1: CARE ETHICS DOES NOT AIM IN THE FIRST PLACE AT

PROVIDING A BETTER SERVICE
The first paradox that comes to light here is that care ethics continually approaches care as a
relationship and not as a product that has to be improved in order to be sought after or to be of
greater value. A practical example to illustrate this: In a unit of competent care-dependent elderly
people in a residential home, the professional staff finds that the twenty minutes available to them
in working practice to provide the necessary morning hygienic care is much too short. They feel as
though they are washing-robots who perform routine work without regard for the person for whom
they are providing the care. Consideration is given to the organisation of hygienic care from the
position of care ethics. A new view is explored that results ultimately in a new approach. From now
on, every morning anew, each resident will be asked what he/she would like to see happen in the
twenty minutes that the professional has at his/her disposal. In due course, residents begin to react
enthusiastically to this question. The professional gains a greater sense of contentment through
being released from a routine approach and experiences that in many areas a much more efficient
approach to time has developed. The residents themselves also experience a greater sense of
contentment, as they feel more valued because they receive much more attention.
We wish to illustrate by means of this example that care ethics seeks in the first place to create
space in the care relationship for attuning the needs to the available time. Care should not be
considered in the first place as a product that must be performed according to certain specific
46
standards, but rather as a relationship in which the relationship itself takes precedence over the
content or over what is subsequently specifically done. However important the result is, it is not
a value in and of itself, but only gains significance in and through the nature and the quality of the
care relationship, in which relationship both the well-being of the care-seeker and the sense of
satisfaction in and through the care relationship have priority. First comes the question: “What can
I do for you?” Professionals need to listen and look very carefully in order to get an answer to this
question. Only when they fully recognise what is important for the patient does the service, and
with it the organisation of care, come into the picture.
4. PARADOX 2: FROM THE PERSPECTIVE OF CARE ETHICS, IT IS NOT

POSSIBLE TO COMPLETELY ORGANISE GOOD CARE
Good care can never be completely organised. This is a second paradox. Care ethics makes it
clear that care is not only about carefulness but also about caring. Carefulness has to do with
the expertise of professionals through which they seek for technically achievable, safe, efficient,
accurate, attainable solutions in answering to the needs of the care-receiver. Caring relates to the
attentiveness with which professionals pick up on the needs, but also to the ethical sensitivity for
the care-seeker’s person, which they take into account throughout the whole care process. Frans
Montaine (2000:130) puts it this way:
“[For] what a person who has been ill will remember is not the speed with which the
doctor managed to correct his dehydration, but rather the way in which the doctor did so.
The difference namely between the cup of water offered to him, or the one that was shoved
between his teeth. The difference between that fresh glass of water and the one that has
been there since yesterday. The difference between being given the time to drink or just
time enough not to choke. The difference between being forced to drink and being able to
say: May I wait a little?” (Montaine, 2000:130).
This kind of caring now only has to be cultivated. When it comes to caring, however, what is it
that needs to be cultivated? Friendliness, basic courtesy? However important these qualities are in
relation to caring, they constitute the bottom line, the bare minimum.
Caring can perhaps best be described by what the French philosopher Emmanuel Levinas
(1995:117-119 passim) called “small goodness”. He meant by this a sort of everyday, human
goodness, a personal goodness of the one person toward the other.1 It is precisely this small
goodness that makes a big difference in care. It is however so fleeting and small, and, in the light
of the ideal of good care, so seemingly banal, that Levinas has rightly qualified it as “small”, partial
and provisional. It is thus nothing more than a little bit of goodness, a moment in which good lights
up, so much so that it briefly alleviates, postpones momentarily, a patient’s suffering. The small
goodness is essentially a gift, both for the patient and the professional, because it is made possible
47
in spite of the latter. What is characteristic of this small goodness is that it cannot be willed, let
alone programmed or planned. It cannot be summarised in procedures and regulations. It can only
come about in the relationship between two people, in which one just does something for the other,
without deep reflection on what it will lead to, without the intention even of bringing about some
good, and particularly without concocting great plans and strategies to achieve the very best. What
the professional does is much too small for this, much too fleeting, much too fragile. The small
goodness is to be found in very ordinary things that characterise day to day relationships without
attracting much attention. It is even a little difficult to call these things “small goodness”. At the
same time, the human aspect of care disappears if such “small goodness” is no longer possible.
Or, one could even say, without “small goodness”, one cannot speak of caring. And one cannot
then even speak of carefulness, for without “small goodness”, carefulness has no soul.
What is paradoxical about “small goodness” is that it cannot be organised. To put it even more
strongly, every attempt to organise it is doomed to failure. The only thing that can be organised
is the averting of the danger that threatens every care organisation, namely that small goodness
is smothered or drowned out by an excess of organisation and is restrained by the emphasis on
systems, goals and efficiency. The care organisation as a system reflects an objective, distant and
anonymous character that approaches care seekers collectively, as all being the same consumers
of care. The system’s generalised objectivity has as a result that those who fall under it – the
care seeker in the first place, but also the caregivers – no longer feel they are treated as unique
individuals, but rather as parts in a much greater whole. We can, with Levinas, call this a form
of structural violence that is inherent to every system, even the most ethically valid systems. The
worst thing that can happen to a care system is that it elevates itself into the ultimate, smug truth
about the quality of care. This is why an open system is necessary that allows for a permanent
evaluation. A care system must in other words be prepared to weigh up the achieved forms
of justice and fairness, the agreed options, priorities and achieved equilibrium on the basis of
the ethical dissatisfaction that arises in the workplace among the caregivers as a result of the
shortcomings of the established care practices. An open care system seeks in other words for
an increasingly improved fairness, on the grounds of institutional disillusionment expressed by
– whether emotional and possibly imbalanced or not – care seekers and care receivers. Only an
open care system that is concerned about providing increasingly better care also makes room for
the creativity of the small goodness of singular caregivers, skilled through their experience during
the provision of care in their routine work as caregiver. At the very least, it does not obstruct this
room for creativity. It is also precisely this small goodness that can lead to critical alertness within
the care system in relation to the care system itself, so that the improvement of the system can
also be sought after.
48
5. PARADOX 3: CARE ETHICAL IMPROVEMENT DEMANDS THAT

PROFESSIONALS DARE TO DEVIATE FROM THE RULES AND THE
PRINCIPLES THAT ARE MAINTAINED BY THE CARE SYSTEM
Once again it becomes apparent how important it is for care ethics to find a balance between the
environment of the system and the living environment, between an effective care organisation
and the small goodness of the one person to the other. The small goodness on the part of the
professional then forms an important and indispensable counterweight to the depersonalisation
that is characteristic of every organisation and therefore also of the care organisation. Care
ethics often challenges the policy and the care organisation because it is concerned that the
organisation of care becomes a goal in itself. This is to say that the system is improved for the sake
of improvement, that innovation is stimulated for the sake of innovation, that efficiency is pursued
for the sake of efficiency as the highest good, and so on. Every care organisation is exposed to
the risk that it is no longer focused on the vulnerable individual, but on the organisation itself as
a successful professional and financial whole. When all attention is focused on the organisation
itself, there is always the danger that there will be no more room to tune the individual professional
to the individual care receiver. In this case the suffering of the care-receiver is no longer noticed
and this moreover also has the effect that “suffering is added to suffering” (Levinas, 1994:80-81
passim; Vanlaere & Burggraeve, 2013:67). 2 Levinas makes it clear that the balance between the
environment of the system and the living environment can only be achieved when individuals in the
organisation allow their conscience to speak. It is thus only the “responsible I” of the caregiver that
is in a position to allow him- or herself to be touched by the individual care-receiver. It is namely in
and through the small goodness that the suffering of the vulnerable care-receiver is picked up. And
only in (and through) the small goodness is a response to suffering possible and can people have
justice done to them. Levinas calls this the “noble casuistry”: only through the small goodness do
caregivers allow their judgement to be based on the individual person that they have before them
and do they take the specific situation of every “case” into consideration (Levinas, 1982:121). Or
better put, it does not reduce the other to a number or the specification of a generally held rule.
The other is more than one of dozens who cannot be reduced to a category or general term. The
other facing me is unique, an exception to the rule, with an inalienable own name by which he or
she needs to be addressed.
In this way the organisation also makes it possible to truly offer care that is fair. In the equal
treatment of every person in need of care as whomever, the small goodness is able to give
attention to the unicity of the other. Without destroying the fair approach, it still rises above it. It
raises the care organisation to a higher level, to a level of human excellence, without destroying
agreements that have been made or established as procedure or approach, and without making
this excellence into another generalised procedure, method and tool. It remains stubborn in its
49
small scale, coincidental character, spontaneous nature and casualness. It stubbornly refuses
to rise to embrace a great, but at the same time threatening, idea of good. However it remains in
this way alert to what no one system can achieve as system, however fair it may be, namely the
recognition and the assistance of the other, so that the other is no longer an object but a subject
and the bearer of care and the care relationship.
6. PARADOX 4: THE IMPROVEMENT OF CARE ETHICS IS ONLY

POSSIBLE IF THERE IS ROOM FOR MEDIOCRITY
Once again it becomes apparent how important it is that the care organisation make room – or
leave sufficient room – for small goodness, that is for the face-to-face, the encounter between
the care-seeker and the caregiver. Even if this face-to-face takes place in the institutional context
of a service or care organisation, this face-to-face also always transcends this system. It cannot
be organised, or rather, it must not be organised, but it is possible to cultivate it. Possibly, the
cultivation of this small goodness of the face-to-face approach greatly resembles the development
of plants: it requires light, air, space and water. Just as plants do not thrive on too many pesticides,
the small goodness suffers from too many “ethicides” or from too great a pressure to do what is
good and to continually improve on this. The paradox is that care professionals lose their ethical
inspiration – as passion for what is good – if they have to continually strive for an improvement of
the given care and no allowance is made for the experience of mediocrity.
Professionals personally experience that they can never be careful enough: attentiveness is never
attentive enough; closeness is never close enough to truly do patients justice. This is the mediocrity
that these professionals experience when they are fully involved in healthcare: whatever they do,
their caregiving always falls short of the mark. This does not necessarily involve a shortcoming in
expertise or want of means. Sometimes the suffering of the care-receiver is of such a nature that,
whatever they do, they can never do it well enough This experience of mediocrity demonstrates
that professionals are completely taken up in giving care. It demonstrates that they can still be
affected, are vulnerable to the suffering of the other and that this can even affect them physically.
For the experience of mediocrity is accompanied by what Levinas calls discomfort, which may
even be understood quite literally: it disturbs you; you can’t sleep as a result; you suffer through
the suffering of the other. This discomfort demonstrates, according to Levinas, that we are already
connected to the other even before we have turned towards the other.
Professionals must have room for this mediocrity. It puts the (at times) excessive expectations of
a continual improvement into perspective and introduces a sort of down-to-earth approach that
takes reality into account to the extent that it helps the professional to find the right measure of
care, namely the one to be found between the unattainable ideal and not realising anything. More
50
than anything else, mediocrity introduces modesty into the care system: the best care is not of this
world, and we need to be prepared to accept this. This modesty, not only of the caregivers but also
of the care system, is necessary in order not to abandon the pursuit of what is good, or rather good
enough. Only when professionals and systems – through their ‘representatives’, the managers
and caregivers – are aware of the limitations of their own capacities do they find room for what
is possible. Thanks to the mediocrity, room is created for the small goodness. Not as a sort of
self-comfort, for once again, small goodness is not something that can be sought after, it just
happens. And yet it is this small goodness that ensures that professionals can retain their passion
for what is good. As Levinas says: “It defines people’s humanity, in spite of its powerlessness.
It is beautiful in its powerlessness, like morning dew. It never wins, but it is never conquered”
(Levinas, 2013:67).
It thus becomes the source of modest hope, without eschatological nor apocalyptic claims of
a ‘definitive and perfect care regime’ – the evil as the downside of the good, the final and most
horrible disaster.
7. CONCLUSION
We conclude that caregiving of a high quality does not only have an object-side but likewise a
subject-side. With the object-side we mean the quality of the care-treatment that must comply
completely with the norms of meticulousness, namely that of the safety of the patient, of evidence-
based work, and so on. With the subject-side we mean the quality of the care-relationship and
the caring that should be tangibly present in this relationship. The subject-side has to do with
the openness to being touched emotionally, with concern, with responsibility. Investing as well in
the quality of this subject-side of care does not go hand in hand with ‘loudly-spoken norms’. It
will best be coupled with the acknowledgement that our care from the perspective of caring will
always remain mediocre and thus ‘be found wanting’. Acknowledging this mediocrity – inherent
to the ‘being-human’ of the caregiver and to the ‘human’ care-organisation – creates space for
improvement because it makes one reflect on the humanity of caregiving. Moreover, it creates
space for ‘silent values’, namely a whole gamut of non-sensational, non-heroic ways of acting,
attitudes, gestures, but also the ambitions and motives of people (of which they often are only
partially aware) that make the essential difference between good care and bad care. The ‘silent
values’ of people thrive on two elements: space and trust. Caregivers must obtain space within
frameworks that are not too strongly disturbed by peremptory policy regulations and procedures.
‘Silent values’ witness to the ‘small goodness’ and only thrive when people receive the space
and the trust that they are actually doing all right, or perhaps will even do better, without all those
rules. They flourish only when people have regulative space, can take up responsibility for that
which they deem is at stake for their care-receivers, and can open themselves up to be touched
51
emotionally. They flourish only when people can be – as moderate radicals – gently ‘counter
current’ or even ‘disobedient’ – and when they can dare to flout the rules once in a while and
deviate from the beaten path. The care-ethical quality of caregiving does not flourish when it is kept
within the handgrip of thinking in systems, targets, efficiency and output. Indeed ‘being-caring’
has everything to do with a subtle process of involvement and meaning that gradually unfolds
between people.
REFERENCES
Baart, A. & Grypdonck, M. 2008. Verpleegkunde en presentie. Een zoektocht naar de betekenis van presentie
voor verpleegkundige zorg. Den Haag: Uitgeverij Lemma.
Burggraeve, R. 1994. Tussen Rome en leven. Essay over een ethiek van het haalbare (red. Ilse Van Halst),
Lannoo: Tielt. 73-94.
Grypdonck, M. 2013. Verpleegkundige zorg bij schaarste, In Pijnenburg, M. & Leget, C. (reds). De tijd, het
geld en de wijsheid. Een bezinning op het tijdsprobleem in de gezondheidszorg. Den Haag: Boom Lemma
Uitgeverrs. 13-24.
Leget, C. 2009. Alledaagse dilemma’s. Tijdschrift voor verpleeghuisgeneeskunde 34:110-112.
Levinas, E. 1982. “L’au-delà du verset.” Un entretien avec Emmanuel Levinas.” In Balbont, L. Mère Thérésa
en notre âme et conscience. Paris: Seuil.
Levinas, E. 1994. “Transcendance et hauteur” In ID., Liberté et commandement, Montpellier: Fata Morgana.
80-81 passim.
Levinas, E. 1995. Altérité et transcendance. Montpellier: Fata Morgana. 117-119 passim.
Levinas, E. 2006. Entre Nous. Thinking-of-the-Other, London: New York. Continuum. 198-199.
Montaine, F. 2000. Verpleegkunde. Een persoonlijke bewogenheid. In Dierckx de Casterle & Gastmans,
C. (reds). Verpleegkundige excellentie. Verpleegkunde tussen praktijk en ethiek. Maarssen. Elsevier
Gezonheidszorg:121-139.
Van den Hoven, M., Kanne, M. & Mol, L. 2003. Zorgethische gesprekmodellen voor de gezondheidszorg.
Denken over zorgverantwoordelijkheid en ‘goede zorg.’ In Manschot, H. & Van Dartel, H. (reds), In gesprek
over goede zorg. Overlegmethoden voor ethiek in de praktijk. Amsterdam: Boom. 134-152.
Vanlaere, L. & Burggraeve, R. 2013. Gekkenwerk. Kleine ondeugden voor zorgdragers. Lannoo:
Tielt.
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CHAPTER 5
The Influence of culture, values
and faith on end-of-life decisions
Joyce MacKinnon and Amber Comer

The Influence of culture, values and faith on end-of-life decisions
1. INTRODUCTION
The culture, personal values, and faith of the patient, the family, and the healthcare practitioner
are not always in alignment and, indeed, may commonly clash during a situation of end-of-life
decision making. In order to understand how each of these viewpoints can affect end-of-life
decision making, it is important to understand their ethology. Faith is usually synonymous with a
set of religious beliefs, and denotes a set of shared beliefs that are divine in nature, while culture is
a set of collective beliefs among a group of persons. Personal or individual values are the beliefs
held within the individual. Religion is important in shaping culture and values; however, persons
of the same religion, but raised in different cultures, may not share the same individual beliefs. For
instance, a Roman Catholic raised in the American culture of autonomous decision making, may
have a very different viewpoint on end-of-life care from that of a Roman Catholic raised in Brazil,
which subscribes to a more paternalistic form of medicine. The following hypothetical offers some
insight into the importance of understanding how culture, religion, and individual values can come
into conflict during end-of-life decision making situations.
2. HYPOTHETICAL: A CLASH OF CULTURE, INDIVIDUAL VALUES, AND

RELIGION
A 40-year-old woman named Ashlee is involved in a car accident which leaves her a quadriplegic
and in need of long-term mechanical ventilation. She does not, however, have substantial brain
damage. Although Ashlee was born in America, her parents are Iranian and have only lived in
America since shortly before Ashlee was born. With mechanical ventilation, Ashlee will survive
and live a relatively normal life span; however, she will be confined to a bed and unable to do
anything for herself. Without mechanical ventilation, Ashlee will probably die within hours. As
Ashlee is a Muslim raised with Iranian cultural views, her parents inform her doctor that they
would like Ashlee to have permanent ventilation because life and death are controlled by God and
as such, all measures should be taken to preserve Ashlee’s life. Ashlee’s parents believe that not
doing everything possible, including indefinite mechanical ventilation, would in effect be playing
God by taking Ashlee’s life, and would therefore be a sin.
Ashlee was raised in the US, and twenty years ago she married an American named Brian, who
was raised with a Mormon religious affiliation. Brian believes that Ashlee would not want to be
kept alive as a quadriplegic, confined to a bed, in need of mechanical ventilation to survive. Brian
exhibits the American cultural belief that there is no obligation to keep someone alive with artificial
life support when there is no hope of recovery and that people have the right to choose how
they die. Brian asserts that he does not intend to take Ashlee’s life, but rather that she should be
allowed to die a natural death free of man-made medical intervention. Furthermore, Brian exhibits
54
the Mormon religious view that it is not a sin to allow a person to die from natural causes, which
would be the case if mechanical ventilation were removed from Ashlee.
Further conflating the issue is that although Ashlee was raised as a Muslim and was very engaged
in Iranian culture, she was also raised in America and has been married to Brian for twenty years.
She seems to be an American who exhibits the American cultural belief of patient autonomy. It is
determined that Ashlee holds a mixed viewpoint on end-of-life care and decision making where
she believes that you should do everything possible to help save a patient, but that there are some
situations that leave a patient in a state worse than death and therefore, it is not a sin to remove
life support. It is unclear to everyone what those situations are, and as such Ashlee’s parents and
husband are left to sort through this clash of religious, cultural, and individual values.
One of the most crucial health-related decisions to be made occurs at end-of-life. This is a profound
decision making point: while it ultimately affects the patient most, it also affects family and significant
others as well as healthcare practitioners. All of those involved may be influenced by personal
culture, values and faith, as reflected in the hypothetical situation presented above. Therefore, in this
chapter we propose to examine the influence of culture, values and faith on end-of-life decisions.
Let’s first put this discussion in a conceptual framework. In 1995 Wilson and Cleary (Wilson
& Cleary, 1995:60) presented a conceptual model that proposed that social, economic and
psychological supports, patient values and preferences, and the patient’s environment were all
influential in a patient’s perception of quality of life, and that these factors would influence health
outcomes and healthcare decisions. A patient’s environment includes the culture in which he/she
is situated or raised, as well as aspects of faith or religious background.
Reinforcing this conceptual framework, the Picker/Commonwealth Program for Patient Centered
Care developed a model of care in 1998 that focused on the patient and family and acknowledged
the role that factors other than biological or physiological components have in healthcare decision
making (Gertesis, Edgman-Levitan, Daley & Delbanco, 1993) Echoing the importance of integrating
patient values and preferences into the healthcare decision was the report from the United States
Institute of Medicine in 2001, which highlighted the importance of these concepts as fundamental
in patient care and decision making (National Research Council, 2001).
In 2010, 58 people from 18 countries attended the Salzburg Global Seminar where a statement
on shared decision making in healthcare was crafted and then released (Salzburg Global Seminar,
2010:12). This statement encouraged healthcare practitioners to involve their patients in healthcare
decisions and to ask about personal preferences. Particularly in an age of increased electronic
access to health information, patients are becoming equipped with knowledge and questions
and should be encouraged to express their values and preferences with regard to interventions
and treatments.
55
Research into the influence of culture in end-of-life decisions has been identified as a priority by
a European based research collaboration (PRISMA-Positive Diversities of European Priorities for
Research and Measurement in End of Life Care) (Gysels, Menaca, Bausewein, Gomez-Batiste,
Husebo, Higginson & Harding, 2012) The term culture encompasses multiple constructs to include
societal norms, values, race, ethnicity, religion, language, role of self and family, national origin,
customs, and traditions (Bullock, 2011:85; Braun, Pietsch & Blanchette, 2000). In May of 2010 an
international workshop was organised to explore this issue. A group of experts came together and,
through discussion, several themes emerged (Gysels et al., 2012).
The first theme was that of cultural competence. With the growing realisation and willingness
to acknowledge that there were racial and ethnic disparities in healthcare access and treatment
(Smedley, Stith & Nelson, 2003) “the concept of cultural competence was developed to enable
healthcare practitioners to respond to cultural diversity in practice” (Gysels et al., 2012:289). This
is particularly important in end-of-life decisions. As stated by the participants in the workshop,
healthcare practitioners need a greater “understanding how the cumulative problems of illness;
economic, social and linguistic marginalization; and racism affect palliative care experiences and
needs.” (Gysels et al., 2012:289). There was recognition that more research is needed in this area,
to include creating useable data bases.
The second theme was that of diversity in an environment of change. There are countries with more
homogeneous populations that are somewhat isolated, but in most of the world there is migration
of people from different countries or regions into others, resulting in either a clash or a blending of
culture. There are also inter-generational differences in approaches to end-of-life decisions, and
with an aging population these differences will need to be acknowledged (Gysels et al., 2012:289).
A third theme to emerge from this workshop was the need to recognise the role of religious identity
in end-of-life decision making. A study conducted by Sprung, Maia, Bulow, Ricou, Armaganidis,
Baras, Weenberg, Reinhart, Cohen, Fries, Nakos and Thijs (2007) and published in 2007 found that
the religious affiliation of physicians influenced end-of-life decisions. Physicians who identified as
Muslim, Jewish or Greek Orthodox were more likely to withhold end-of-life prolonging interventions
as compared with those who were Protestant, Catholic or had no religious identity. However, the
latter were more likely to withdraw treatment when compared with the former (Sprung et al.,
2007:1732). In some cultures and religions, there is a belief that what happens is the will of God or
Allah and that interventions are therefore not appropriate. Even within religions there are differing
views in different sects.
A fourth theme was the importance of recognising cultural differences as they relate to how
autonomy is perceived and valued (Gysel et al., 2012:289). In Western cultures, individual
autonomy is valued, but in three-quarters of the world’s population it is not (Blank, 2011). This will
56
have an effect on end-of-life decision making. For example, a study by Croasdale (2005) found
that, in contrast to United States resident physicians, Japanese resident physicians were more
likely to include the patient’s family in end-of-life decisions.
In summary, the workshop experts identified areas of culture that should be recognised and
acknowledged as affecting end-of-life decisions, with the understanding that more research
needed to be done to develop a greater appreciation for the role of culture in healthcare decision
making. As stated by Blank, “Even more so than in other areas of medicine, issues at the end of
life elucidate the importance of religion and culture, as well as the role the (sic) family and social
structure” (Blank, 2011:213)
In 2011 Robert Blank, a professor of political science at the University of Canterbury in Christchurch,
New Zealand, published an article titled “End-of-life Decision Making Across Cultures” (Blank
2011). In this article he explored cultural differences in Western and Eastern countries that affect
end-of-life decisions. For example, how is death defined? In some countries, the legal definition
is a cessation of brain function. However, in other countries death is defined by cardiorespiratory
cessation. These definitions are influenced by advances in technology, where it is now possible
to prolong cardiorespiratory function even in the absence of brain function (Blank, 2011: 203).
Another area where culture impacts end-of-life decisions is that of artificial feeding at the end
stage of life. In the United States, this intervention is not uncommon. In other countries, cause of
death is not attributed to failure to eat, which rather is considered one of the signs that a person
is near death (Dunn, 2009). Advanced directives and euthanasia, whether active or passive, are
also subject to cultural influences. Active euthanasia occurs when the patient is provided or given
a lethal injection; passive euthanasia occurs when measures to prolong life, such as mechanical
ventilation, are either not provided or are withdrawn (Blank, 2011: 210).
An article written by Jill Klessig, MD, highlights the influence of values and cultures on end-of-
life decisions; in this case, to withdraw life support. Klessig used case examples to illustrate the
influence of culture, particularly with regard to religion, in making these decisions. One example
was that of a young Iranian girl who was admitted to hospital on full ventilation support, but
upon evaluation was found to be brain dead. The family did not want the ventilator removed,
and also requested other medical procedures, making what the healthcare team characterised
as unreasonable demands. On the second day of admission, after the family had left the ICU,
the attending physician removed the ventilator. Upon return, the family was extremely upset and
accused the medical staff of murdering their daughter. Not only did this example highlight the
influence of religion and culture (Islamic, Arabic) but also the clash between the values of the
family and those of the healthcare practitioners (Klessig, 1992: 317).
57
In looking at aspects of this case, Klessig points out the influence of culture and religion on end-
of-life decisions, and some of the nuances of both. For example, in Islam, the belief is that both life
and death occur according to the will of God (Hathout, 1990:25). Interestingly, initiating treatments
and interventions is acceptable because one is using the ‘gift’ of technology but stopping life
support, once initiated, is not (Al-Mutawa, 1989:S11). This case also illustrates the conflict that
may arise between the western view of autonomy and a more family centred patriarchal view when
making healthcare decisions. The case also points out the influence of culture on a definition of
death. To the family, their daughter was not dead since she still had a heartbeat. To the physician,
the patient was dead due to a lack of brain function. One pivotal cultural clash is that in the Iranian
culture, the family is expected to be demanding with regard to healthcare; not doing so would
indicate a lack of concern for their daughter (Al-Mutawa, 1989:S11).
One of the few books to compare and contrast end-of-life decisions in multiple countries was
edited by Blank and Merrick (Blank & Merrick, 2005). In this book, differences of culture, religion,
values, and economics were highlighted as influencers on end-of-life decisions in countries as
diverse as the United States, Kenya, Israel and China. For example, in countries where there is a
strong familial interdependence coupled with a scarcity of affordable healthcare facilities, most
people die at home. In contrast, particularly in western societies, the majority of deaths occur
in hospital.
An example of cultural differences was reported by Chattopaddhyay and Simon (2008) as they
contrasted the cultures of India and Germany and their effects on end-of-life decisions. They found,
for example, that in India illness is more of a family affair rather than an individual experience and
therefore a physician is more likely to respect the family’s wishes with regard to what information
to share with the patient and decisions regarding end-of-life. In contrast, in Germany a physician is
legally required to inform the patient regarding his/her illness or disease. However, in many Asian
cultures, it is not considered appropriate to inform a patient of a cancer diagnosis (Searight &
Gafford, 2005; Hu, Chiu, Chuang & Chen, 2002). Finally, advance directives are extremely rare in
India while mandatory in Germany (Chattopaddhyay & Simon, 2008). In Kenya, Turkey and India
euthanasia in any form is illegal while in other countries what is termed “passive euthanasia” –
withholding food and water or active medical treatment – is more acceptable (Blank & Merrick,
2005). In the United States, five states have legalised physician-assisted suicide, often referred to
as “death with dignity”.
Even within a single country, there are cultural differences. For example, in a study conducted in
the United States, it was found that hospice use was low among Latinos due to a culture that is
family-centred, tending not to want information about illness prognosis, and making decisions
collectively as a family (Kreling, Selsky, Perret-Gentil & Mandelblatt, 2010). In another United States
study, African Americans wanted life-saving interventions to a greater degree than did Caucasian
58
Americans (Shrank, Kutner, Richardson, Mularski, Fischer & Kagawa-Singer, 2005:703). Family
support is particularly influential in ethnic minorities. For example, African Americans and Latinos
tend to rely more on family members than healthcare practitioners when making end-of-life
decisions (Bullock, 2011:91). In some cultures, particularly those that are patriarchal, end-of-life
decisions may be made by the dominant male in the family rather than by the patient him\herself.
In 2011 Frost, Cook, Heyland, and Fowler (2011) published a systematic review focused on factors
influencing end-of-life decisions. They identified 6259 publications with possible relevance, and
then narrowed inclusion to 102 relevant articles. They concluded that patients and clinicians
did indeed differ in preferences and expectations regarding end-of-life decisions. In general,
culture, religion, race and geography appeared to be important factors in influencing end-of-life
discussions and decisions. Of particular note was that there seemed to be consensus among
patients and healthcare practitioners that age, co-morbidities and functional status would affect
end-of-life decisions. North American and Northern European patients of Caucasian background
were less likely to want intensive interventions at end-of-life when compared to other cultures and
ethnic groups. When healthcare practitioners and patients were of similar ethnicity or came from
the same geographic region, intensive interventions were also less likely to be prescribed. Finally,
it was noted that increased availability of technology makes these conversations even more critical
and complex now and will do so in the future.
It is important to remember that while the patient is the person most affected by end-of-life
decisions, the family and significant others are also affected and influence such decisions.
The other group involved in the decision making process and final choice are the healthcare
practitioners. Practitioners’ culture, religious beliefs and personal values can affect end-of-life
decisions, both consciously and unconsciously. In studies conducted by Obermeyer, Powers,
Maker, Keating and Cutler (2015) and Seale (2010) it was found that the way in which end-of-life
decisions were framed by the healthcare practitioner influenced patient and family choice. One of
the hardest aspects for healthcare practitioners in providing patient care is accepting the values
and preferences of the patient, even when they are not aligned with one’s own beliefs.
It must be recognised that patient values may change over time and this change should be
respected. For example, let’s say we have a husband and wife who have been married for over
50 years. They are devoted to each other and have expressed on multiple occasions the fact that
they will do everything in their power to stay together. Then the husband suffers a stroke, and
must live with the physical and mental changes that accompany such a condition. His values
slowly change, and he tells his wife that if he were to experience another stroke he would not want
intensive interventions to prolong his life. The wife listens, but still values their intention of staying
together for as long as they can. Then the husband has a second stroke. His values have changed,
as we have seen, and he does not want heroic measures to prolong his life. His wife, on the other
59
hand, says that they have always wanted to stay together, no matter what, and asks the healthcare
team to institute whatever measures are necessary to prolong his life. Clearly, an ethical dilemma
is presented here as to whose values and desires ought to be paramount.
3. CONCLUSION
In this chapter, we have emphasised how complicated resolving ethical dilemmas can be for
healthcare providers and patients’ families. Even with information about the patient’s values and
preferences, identifying what the patient would truly want and aligning the patient’s desires with the
wishes of the patient’s family members can still present challenges and create conflict. Although it
may seem daunting to resolve ethical dilemmas, such as those presented in the examples provided
in this chapter, there are resources available to clinicians and the healthcare team to help resolve
these dilemmas and provide quality care to the patient.
When faced with an ethical dilemma, clinicians and healthcare providers are encouraged to
consult their organisation’s medical ethics committee. Ethics committees are trained to support
healthcare teams in resolving complicated ethical dilemmas in order to optimise patient care
(Ethics Committee Judicial Council, 1994). In the event that an ethics committee is not available,
clinicians and healthcare providers should consult ethical resources to assist them in resolving
the ethical dilemma. For instance, the American Medical Association’s Code of Medical Ethics is
available to all persons, free of charge via the internet (AMA, 2015).
In summary, this chapter was written to highlight the influence of culture, values and faith on end-
of-life decisions. Healthcare practitioners must be mindful of these influences if they are to provide
culturally sensitive care. Practitioners also need to accept that their own beliefs may be in conflict
with a patient’s beliefs: one of the most difficult situations to manage. When confronted with end-
of-life decisions, the practitioner needs to recognise that the patient comes with a set of cultural
mores, personal values and faith and all must be recognised to create a dialogue in which these
factors are acknowledged and an informed decision can be made.
Healthcare practitioners must first recognise the influence of their own culture, values and faith on
their practice. This should be a reflection done prior to confronting patient end-of-life decisions. This
is not a one-time exercise, but should be performed periodically since we have seen that influences
may wax and wane over time and be affected by life experiences and changing environments. For
example, a healthcare practitioner who has experienced the death of a loved one may be influenced
by that experience and may perhaps think differently about end-of-life choices and decisions than
he/she has previously done. Furthermore, a practitioner who becomes immersed in a culture that
differs from his or her birth culture may assume some of the values of the new environment.
60
Once the healthcare practitioner has identified his or her own values and beliefs, and has
acknowledged the impact of faith and culture on these beliefs, he or she needs to explore the
culture, faith and values of each patient. It is important not to make assumptions based on what
we might think we know about a particular belief system or a particular geographically located
community. Also, as we have seen, it is important to understand the family dynamics in any end-
of-life decision. As has been presented in this chapter, sometimes the family is more influential
than the practitioner in the decision making process. Finally, while it is the duty of a healthcare
practitioner to explain options, it is also the obligation of the practitioner to respect the decision of
the patient/family even when that decision may not be the one the practitioner would recommend.
However, if the patient’s decision is one that is in severe conflict with practitioner values or
beliefs, the practitioner should, ethically speaking, refer the patient elsewhere to ensure culturally
competent care.
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Al-Mutawa, M. 1989. Healthcare ethics in Kuwait. Hastings Cent Rep. 19: S11-12.
American Medical Association. 2014-2015. Code of Medical Ethics: Current Opinions with Annotation,
Chicago, Ill, AMA Press. Available at http://www.ama-assn.org/ama/pub/physician-resources/medical-
ethics/code-medical-ethics.
Blank, R.H. 2011. End-of-life decision making across cultures. Journal of Law, Medicine and Ethics. Special
Issue: Cost and End of Life Care. 201-214.
Blank, R.H. & Merrick, J. (Eds). 2005. End-of-Life Decisions Making: A Cross National Study. MIT Press:
Cambridge.
Braun, K.L., Pietsch, J.H. & Blanchette, P.L. 2000. An introduction to culture and its influence on end-of-
life decision making. In Braun, K.L., Pietsch, J.H. & Blanchette, P.L. (Eds). Cultural Issues and End-of-Life
Decision Making. Thousand Oaks, CA.: Sage Publications. pp 1-11.
Bullock, K. 2011. The influence of culture on end-of-life decision making, Journal of Social Work in End-of-
Life & Palliative Care. 7:83-98.
Chattopaddhyay, S. & Simon, A. 2008. East meets west: Cross-cultural perspective in end of life decision
making from India and German viewpoints. Medicine, Healthcare and Philosophy. 11:165-174.
Croasdale, M. 2005. Study examines death across cultures. American Medical News. 48(31):13.
Dunn, H. 2009. Hard Choices for Loving People, 5th edition., Lansdowne, VA.: A&A Publishers.
Ethics Committee Judicial Council. 1994. Guidelines for Ethics Committees in Health Care Institutions.
Journal of the American Medical Association, 253(18):2698-2699.
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Frost, D.W., Cook, D.J., Heyland, D.K. & Fowler, R.A. 2011. Patient and healthcare professional factors
influencing end-of-life decision-making during critical illness: A systematic review. Critical Care Medicine.
39 (5):1174-1189.
Gertesis, M., Edgman-Levitan, S., Daley, J. & Delbanco, T. 1993. Through the patient’s eyes. Jossey Bass:
San Francisco.
Gysels, M., Menaca, A., Bausewein, C., Gomez-Batiste, X., Husebo, S., Higginson, I. & Harding, R. 2012.
Culture is a priority for research in end-of-life care in Europe: a research agenda. Journal of Pain and
Symptom Management. 22(2):285-294.
Hathout, H. 1990, Islamic basis for biomedical ethics. In Transcultural Dimensions of Medical Ethics,
Symposium Proceedings. Washington, DC.: Fida Research Foundation. pp 25-26.
Hu, W.Y., Chiu, T.Y., Chuang, R.B. & Chen, C.Y. 2002. Solving family-related barriers to truthfulness in cases
of terminal cancer in Taiwan: A professional perspective. Cancer Nursing, 25(6):486-492
Klessig, J. 1992. The effect of values and culture on life-support decisions. Cross-cultural Medicine – A
Decade Later (special issue). Western Journal of Medicine, 157:316-322.
Kreling, B., Selsky, M., Perret-Gentil, E.E. & Mandelblatt, J.S. 2010. The worst thing about hospice is that
they talk about death: contrasting hospice decisions and experiences among immigrant Central and South
American Latinos with US-born white, non-Latino cancer caregivers. Palliative Medicine, 24 (4):427-434.
National Research Council. 2001. Crossing the quality chasm: a new health system for the 21st century.
Washington, DC: National Academic Press.
Obermeyer, Z., Powers, B.W., Maker, M., Keating, N.L. & Cutler, D.M. 2015. Physician characteristics strongly
predict patient enrolment in hospice. Health Affairs. 34(6):993-1000.
Salzburg Global Seminar. 2010. The greatest untapped resource in healthcare? Informing and involving
patients in decisions about their medical care. December 2010. pp 12-17. www.salzburgglobal.org.
Seale, C. 2010. The role of doctors’ religious faith and ethnicity in taking ethically controversial decisions
during end-of-life care. Journal for Medical Ethics. 36:677-682.
Searight, H.R. & Gafford, J. 2005. Cultural diversity at the end of life: Issues and guidelines for family
physicians. American Family Physician, 71(3): 515-522.
Shrank, W.H., Kutner, J.S., Richardson, T., Mularski, R.A., Fischer, S. & Kagawa-Singer, M. 2005. Focus group
findings about the influence of communication preferences in end-of-life care, Journal of General Internal
Medicine, 20(8):703-709.
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in health care. Committee on understanding and eliminating racial and ethnic disparities in health care. Board
on Health Sciences Policy, Institute of Medicine. Washington, DC: National Academy Press.
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Sprung, C.L., Maia, P., Bulow, H-H., Ricou, B., Armaganidis, A., Baras, M., Weenberg, E., Reinhart, K., Cohen,
S. Fries, D., Nakos, G. & Thijs, L. 2007. The importance of religious affiliation and culture on end-of-life
decisions in European intensive care units. Intensive Care Medicine, 33 (10):1732-1739.
Steinbrook, R. 2008. Physician-assisted death: From Oregon to Washington State. New England Journal of
Medicine, 359:2513-2515.
Wilson, I.B. & Cleary, P.D. 1995. Linking clinical variables with health-related quality of life. Journal of the
American Medical Association, 273 (1):59-65.
63
CHAPTER 6
ETHICS AND HUMAN RIGHTS
IN HEALTHCARE
Andrè Moore
ETHICS AND HUMAN RIGHTS IN HEALTHCARE
1. INTRODUCTION
Everybody has a right to healthcare.
This fundamental and inclusive right is undeniably the basis on which health programmes and
policies should be built. This right to health is a fundamental part of our human rights and of our
understanding of a life of dignity (Constitution WHO.1946). The 1946 Constitution of the World
Health Organisation (WHO) defines health as “a State of complete physical, mental and social
well-being and not merely the absence of disease or infirmity” (The Right to Health, June 2008).
In 1948 the Universal Declaration of Human Rights also confirmed health as part of the right
to an adequate standard of living (Declaration of Human Rights, 1948). The 1966 International
Covenant on Economic, Social and Cultural rights also recognised health as a basic human right
(ICESCR, 1966).
The general consensus is that one’s own health and the health of those we care about is a matter
of daily concern Declaration of Human Rights, 1948). To all of us, our health is regarded as our
most basic and essential life asset.
The tragedy is that vulnerable and disadvantaged groups are more susceptible to health problems
and do not always have access to quality healthcare. In many countries, such as South Africa, a
large majority of the population is dependent on the state to provide adequate and quality healthcare.
There are certain basic and important observations that should be borne in mind when it comes
to human health: health is more than simply the absence of disease; human well-being is a human
right; and circumstances such as poverty contribute to health challenges and vulnerability.
In this chapter the focus will be on how a human rights culture can contribute towards addressing
people’s vulnerability in public healthcare.
2. THE STATE’S RESPONSIBILITY TOWARDS PROVIDING HEALTHCARE
In South Africa, the right to healthcare is provided for in three sections of the Constitution (Republic
of South Africa, 1996):
■■ Section 27(1) (a) states that “Everyone has the right to have access to healthcare services”.
■■ Section 27(1) (b) places an obligation on the State to “take reasonable legislative and all
measures, within its available resources, to achieve the progressive realisation of the right.”
■■ Section 27(3) states that no one can be denied emergency medical treatment.
66
In addition to these obligations to the provision of healthcare, Section 7(2) of the Constitution
confirms the obligation on the State – “the State is obliged to respect, protect, promote and fulfil
all the rights in the Bill of Rights (Constitution of South Africa, 1996).
It is not only the South African Constitution that emphasises the State’s responsibilities. Article 12
of the International Covenant on Economic, Social and Cultural Rights, provides the framework for
the State to realise the right to “the enjoyment of the highest attainable standard of physical and
mental health conditions to living a life of dignity” (United Nations resolution 2200A(XXI) 16 Des
1966) Interventions to reach this objective include: the provision of healthcare facilities, goods and
services in sufficient quantity; these must be physically and economically accessible to everyone;
they must be ethically and culturally acceptable; and must be of medically appropriate quality.
Furthermore, the progressive realisation of the right in regard to, and the provision of the healthcare
services cannot be deferred indefinitely. According to the Limburg Principles, state parties must
move as expediently as possible towards the full realisation of the right. (Right to Health April
2000-March 2002).
In April 2009 the South African Human Rights Commission (SAHRC) found the public health
system in a lamentable state (IRIN News, 2009). Between 80 and 90% of the population are
dependent on the public health system. There is an obligation on the state to provide healthcare
based on human rights and ethical principles.
“The mandate to ensure and protect the health of the public is an inherently moral one”
(Thomas, Sage, Dillenberg and Guillory, 2002).
The obligation of care for the well-being of communities implies the possession of an element of
power to carry out the mandate (Thomas, Sage, Dillenberg & Guillory, 2002). Thus the authorities
must use the power vested in them to create a public health system ensuring healthcare services to
everybody. A public health system can be defined as: “The Science and Art of preventing disease,
prolonging life and promoting health through organized efforts of society” (Blacksher, 2014).
The role of a public health system is well described by a Graduation Class in 2002 of the Public
Health Leadership Institute that drafted a code of ethics for public health. Although it was written
with the American public health system in mind, it can be useful to all people, throughout the
world, working in a public health environment or public health system. The principles of the ethical
procedure of public health are (Thomas, Sage, Dillenberg & Guillory, 2002):
■■ Public health should address principally the fundamental causes of disease and requirements
for health, aiming to prevent adverse health outcomes.
67
■■ Public health should achieve community health in a way that respects the rights of individuals
in the community.
■■ Public health policies, programmes, and priorities should be developed and evaluated through
processes that ensure an opportunity for input from community members.
■■ Public health should advocate and work for the empowerment of disenfranchised community
members, aiming to ensure that the basic resources and conditions necessary for health are
accessible to all.
■■ Public health should seek the information needed to implement effective policies and
programmes that protect and promote health.
■■ Public health institutions should provide communities with the information they have that is
needed for decisions on policies or programmes and should obtain the community’s consent
for their implementation.
■■ Public health institutions should act in a timely manner on the information they have within the
resources and the mandate given to them by the public.
■■ Public health programmes and policies should incorporate a variety of approaches that
anticipate and respect diverse values, beliefs and cultures in the community.
■■ Public health programmes and policies should be implemented in a manner that most
enhances the physical and social environment.
■■ Public health institutions should protect the confidentiality of information that can bring harm
to an individual or community if made public. Exceptions must be justified on the basis of the
high likelihood of significant harm to the individual or others.
■■ Public health institutions should ensure the professional competence of their employees.
■■ Public health institutions and their employees should engage in collaborations and affiliations
in ways that build the public’s trust and the institution’s effectiveness.
The state’s responsibility towards public health is imperative for quality service delivery in (public)
health. This responsibility should therefore be evident in patient care.
Dorland’s Medical Dictionary (1994) defines “patient care” as “the services rendered by members
of the health profession and non-professionals under their supervision for the benefit of the patient.
In this case patients are the beneficiaries of the services. The focus on patient care is to treat
people in need of medical care without any discrimination on any grounds, or any exclusion due to
social group, ethnic, race, gender, religion or political affiliation. This approach constitutes equity in
healthcare. Equity means social justice or fairness, and can be defined as the absence of socially
68
unjust or unfair health disparities (Braveman & Gruskin, 2002). Braveman and Gruskin regards
equity as an ethical principle and is closely related to human rights principles.
To achieve ultimate patient care, a fine balance between patient and providers’ rights is critical.
Providers can only provide high quality care if their rights are respected and if they can work in
decent conditions with professional independence.
The concept of human rights in patient care widens from the individual patient-provider relationship
to system factors and state responsibility in the provision of healthcare. Human rights can
therefore not be limited to the individual treatment of a patient but are part of the broader ecology
of healthcare.
This orientation is evident when the close relationship between medical ethics and human rights
is examined.
3. MEDICAL ETHICS AND HUMAN RIGHTS
It is evident that medicine, public health, ethics and human rights are all interrelated (Mann,1997)
Medical ethics are based on four principles, also known as the Georgetown Mantra. These
principles are:
■■ Respect for autonomy
■■ Beneficence
■■ Non-maleficence
■■ Justice
Beauchamp and Childress (2001:88) give context to these principles:
■■ Respect for autonomy: respecting the decision making capacities of autonomous persons;
enabling individuals to make reasoned informed choices.
■■ Beneficence: this considers the balancing of benefits of treatment against the risks and costs;
the healthcare professional should act in a way that benefits the patient.
■■ Non maleficence: avoiding the causation of harm; the healthcare professional should not
harm the patient. All treatment involves some harm, even if minimal, but the harm should not
be disproportionate to the benefits of treatment.
■■ Justice: distributing benefits, risks and costs fairly; the notion that patients in similar positions
should be treated in a similar manner (Beauchamp & Childress, 2001:12,13).
69
Human rights and medical ethics work together to provide the maximum benefit to each individual.
Human rights are concerned with socio-political aspects and place a duty on the state to provide
services and facilities to realise these rights and to comply with minimum standards. Medical
ethics are more personal and focus more on the doctor-patient relationship. The implication is
that medical ethics place a duty on doctors to comply with a parallel standard (Beauchamp &
Childress, 2001). Doctors must treat their patients within ethical guidelines whilst adhering to their
employers’ specifications and rules, without violating patient’s rights.
Human rights and medical ethics complement each other and create maximum protection and
care for the patient. Medical ethics and human rights are also closely related and dependent on
each other, for example, the right to life and physical integrity as a basic human prerogative. Thus
a human rights framework can be used to protect people from harm in the biomedical speciality
(Adorno, 2007).
It can be said that human rights actively function as a global ethical foundation.
4. APPLICATION
It is possible that a healthcare provider could be forced to provide a standard of care that violates
ethical principles due to lack of resources or poor working conditions. This may not only offend
basic human dignity, but also violates the patient’s right to the highest standard of care.
Jonathan Cohen and Tamar Ezer (2013:7) refer to dual loyalty as another possible risk of human
rights violations. Dual loyalty refers to a healthcare provider’s simultaneous obligation to a patient
and to a third party, for instance the state. The risk of human rights violations becomes a reality
when governments and other third parties demand that healthcare professionals follow instructions
and guidelines that often violate the rights of patients.
A classic example is the Steve Biko case. Steve Biko was an anti-apartheid activist in South
Africa in the 1960s and 1970s. He was a student leader and founder of the Black Consciousness
movement. He was arrested and was brutally assaulted by the security police. Dr Ivor Lang, a
district surgeon, examined Steve Biko who was brought to hospital by the security police after
interrogation. Although Biko had bruises, slurred speech and unstable gait, Dr Lang issued a
medical certificate stating “I have found no evidence of any abnormality or pathology on the
patient”. Biko was examined a second time by Dr Lang and his superior, Dr Benjamin Tucker. Dr
Lang found clinical signs indicating a possible brain injury. A neurologist also examined Biko and
recommended Biko to be transferred to another hospital for admission and close observations.
Biko, however, was transferred to Pretoria Central Prison where he died unattended after having
been denied correct medical treatment. This gross violation of the right to healthcare constitutes
70
gross negligence and unethical conduct. A medical practitioner’s primary concern is the well-
being of the patient: the best interests of the patient should always bear more weight than any
other consideration.
The right to healthcare places an ethical obligation on the state to provide health services and
facilities that are accessible and acceptable – this include goods and services to be respectful
of medical ethics. Healthcare professionals must meet appropriate ethical codes of conduct.
Access to healthcare facilities and services must be without discrimination, more especially in
regard to vulnerable and marginalised groups. Public health ethics should therefore focus on
creating professional codes to regulate the profession in relation to the public, human rights, target
governments and/or the policies they enforce (Cohen & Ezer, 2013:7)
In addition, human rights and patients’ rights should provide “a method for arriving at concrete
decisions” and should provide a framework within which to judge complex and ethically challenging
clinical interventions, as well as a set of procedures for enforcing those decisions (Marks, 2001).
(See Chapter 9 for a framework for decision making in healthcare.)
5. CONCLUSION
Ethics traditionally encompasses controlling, guiding and directing relationships and actions of
healthcare workers. Ethical standards have been drafted and developed over many years for the
protection of patients and healthcare workers. They are nevertheless adaptable and can and should
be adjusted to meet evolving new challenges in healthcare and science.
Human rights are drafted, negotiated and incorporated in international law. These rights are more
rigid and less adjustable than ethics. There is, however, a close link between ethics and human
rights, both conceptually and operationally (Guskin, Mia & Dickens, 2006:1903-1905).
This relationship not only provides maximum protection to patients, providers and vulnerable
groups, but also the means to examine relevant issues. One example of protection is to be found
in the requirement of state responsibility. This confers upon the public health system an obligation
to provide services of the highest attainable standard, and also to protect patients from any
inhumane treatment.
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International Affairs.
Republic of South Africa. 1996. Constitution of South Africa, 1996. Pretoria: Government Printer.
United Nations office of the High Commissioner for Human Rights June 2008 Factsheet No 31. The Right
to Health.
Thomas, J.C., Sage, M., Dillenberg, J., Guillory, J., Do, V. A.M.J. 2002. A Code of Ethics for Public Health.
Public Health, 92(7).
The Universal declaration of Human Rights adopted. UN: General Assembly 10 December 1948 Palais de
Challiot Paris (www.un.org.en/universal declaration-hum-rights/)
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CHAPTER 7
Euthanasia, do we dare?
Charnè Viljoen
Euthanasia, do we dare
1. INTRODUCTION
With the advances in medicine and technology, life can be prolonged for some, but for others it can
mean a prolonged suffering which moves us to ask whether or not we should do everything that
we are able to do for a patient (The End of Life Decisions Bill, 1998:x).
On 4 May the South African High Court made a ruling allowing euthanasia in Stransham-Ford v The
Minister of Justice And Correctional Services and Others (27401/15) [2015] ZAGPPHC 230. This
ruling opened up, a whole new field of possible ethical challenges. Stransham-Ford was allowed
by the High Court to end his life through medical intervention.
The High Court also ruled that the practitioner who acceded to the request of the applicant, Adv.
Stransham-Ford, would not be acting unlawfully and would not be subject to prosecution by
the National Director of Public Prosecution or subject to disciplinary proceedings by the Health
Professions Council of South Africa for assisting the applicant (Stransham-Ford v Minister of
Justice and Correctional Services and Others, 2015 4 SA 50 GP:35(26)).
With this controversial order the High Court established a cause of action where no cause of action
had existed in South African law before (Van Der Merwe, 2015:8). This was changed however
by the ruling made on the 6 December 2016 by the South African Supreme Court of Appeal in
Minister of Justice and Correctional Services v Estate Stransham-Ford (531/2015) 2016 ZASCA
197 (6 December 2016). The Court upheld the appeal of the applicant and found that it is still
illegal to allow euthanasia, whether assisted or administered by a physician. This can only possibly
be changed once contested in the Constitutional Court of South Africa.As a human rights driven
society we should all support the preservation of human life. However, an equally important human
right is the right to dignity.
By allowing a decision on the choice of termination of pregnancy, for example, we already allow
the choice to terminate a human life, yet it somehow seems easier to end a life that is still in
development rather than a life that is nearing an end.
If people are granted the right to make such end-of-life decisions, both dignity and freedom of
choice will be protected and promoted; but there is also the possibility for abuse, which was one
of the South African Supreme Court of Appeal’s main concern in its ruling. It is also important to
keep in mind that this is not a death penalty: when a person chooses euthanasia as an option, the
decision can be changed at any time, if the patient so wishes.
This chapter is not an argument for or against euthanasia, but rather an acknowledgement of the
fact that it can be made legal by the South African Constitutional Court. There need to be strong and
clear guidelines for healthcare ethics established, should we dare to brave this new development.
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2. DEFINITIONS
Firstly it is important to understand the concept of euthanasia as well as the different forms of
euthanasia (Verschoor, 2013:87-89). Euthanasia was derived originally from to Greek words
meaning simply “good death” (Beauchamp & Walters, 1989).
Voluntary euthanasia
Voluntary euthanasia occurs when the patient requests someone to give him/her a lethal drug to
bring about death.
Involuntary euthanasia
Involuntary euthanasia occurs when the patient has not given consent or requested anyone to give
him/her a lethal drug. Rather, the person initiating the euthanasia believes it to be the wish of the
patient to be euthanised, and takes matters into his/her own hands.
Direct euthanasia
Direct euthanasia occurs when the occurrence of death is directly established.
Indirect euthanasia
Indirect euthanasia occurs when death is hastened in some way, either by withholding treatment
or by giving an overdose of medicine.
Active euthanasia
Active euthanasia is to act in a positive way (comissio) in order to end a person’s life with the aim
to spare them, the patient, pain and suffering as well as an undignified death.
Passive euthanasia
Passive euthanasia is the act of omissio (not acting) where the person does not do anything to
save the patient’s life.
3. RULE OF LAW
Life – Everyone has the right to life (Constitution of the Republic of South Africa).
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The right to life, as set out in section 11 of the South African Constitution, is a right with high value
in our society and everything in our power should be done to support this right. What happens,
though, when a person is diagnosed as terminally ill, with no prospect of recovery, and in fact a
slow painful death is unavoidable?
The only thing that can be done, currently, for such a patient is to provide them with palliative care,
but this could prove to be very expensive. The patient has no other choice but to pay for this care,
since euthanasia is not a legal option.
This brings us to another, equally highly valued, right. According to the right to human dignity as
set out in section 10 of the South African Constitution, everyone has inherent dignity and the right
to have their dignity respected and protected. A person’s dignity is lost the moment he/she cannot
do anything for him-/herself anymore when he/she has to be fed and bathed like an infant.
Furthermore section 12(2) of the South African Constitution states that everyone has the right to
bodily and psychological integrity, which includes the right to security and control over their body.
Should euthanasia be legalized and become an option, clear guidelines should be set as to when it
could be authorised. This process must be regulated by law.
In 1998 the Law Commission (now known as the Law Reform Commission) wrote a report on
proposed legislation regulating euthanasia. This was called the “End-of-life decisions Bill”. Firstly
the Bill sets out the different circumstances under which a patient may request a practitioner to
provide a lethal drug which will cause the patient to die; then it also mentions the situation in which
the patient is clinically dead and kept alive by life-sustaining machines and these are then switched
off; and furthermore it deals with the case where the patient is both mentally and legally capable
of making a decision to end his/her own life, by way of euthanasia. The Bill furthermore sets out
the circumstances in which a patient may be seen as not mentally or legally capable of making a
decision regarding his/her own life, and also has no chance on recovery.
The End-of-life decisions Bill goes further and distinguishes between the circumstances in which
the patient only requests the practitioner to provide the lethal drug, but not to administer it, and
those circumstances in which the patient requests the practitioner to both provide and administer
the lethal drug.
This Bill sets out clear guidelines as to how the medical practitioner should conduct him- or herself
in the event of clinical death and also how the medical practitioner should conduct him-/herself in
relieving distress.
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Using the guidelines set out in the End of Life Decisions Bill as well as new, more modern guidelines,
an attempt may be made to address the ethical challenges which professionals will be facing with
regard to euthanasia.
It is also good to have a look at countries where euthanasia is already legalized and in practice. The
Netherlands for example requires that the physician terminates a life with due care. Furthermore,
a patient may qualify for euthanasia or assisted suicide if the doctor holds the conviction that the
patient’s suffering is lasting and unbearable. There is no requirement that the suffering be physical
or that the patient be terminally ill (Patients’ Rights Council. http://www.patientsrightscouncil.org/
site/hollands-euthanasia-law/ ).
4. ETHICAL CHALLENGES
The Health Professions Council of South Africa (HPCSA) sets out thirteen core ethical values
and standards required of healthcare practitioners (HPCSA Booklet 1, 2008:2). Out of these
thirteen core ethical values and standards, four can be identified to have the greatest impact
on decisions related to euthanasia. These four core values are collectively known as the
“Georgetown Mantra” and consist of autonomy, non-maleficence and beneficence and justice
(Hadjistavropoulos, 1996:169).
According to the HPCSA concerning patient autonomy, healthcare practitioners should honour the
right of patients to self-determination, to make their own informed choices and to live their lives by
their own beliefs, values and preferences (HPCSA, 2008:2). This can be emphasised by section
12(2) of the Constitution granting the right to bodily and psychological integrity.
Refusing a competent person’s request for cessation of therapy or cessation of life implies a
disrespect of that person’s deliberate choices and infringes the value of autonomy (Albright &
Hazler, 1995). Granting autonomy to a patient can lead to the compromise of another ethical value,
however, that of non-maleficence (Albright & Hazler, 1995), that is, to do no harm.
Healthcare practitioners should not harm or act against the best interests of patients, even when
the interest of the latter conflict with their own self-interest (HPCSA, 2008:2). However, providing
a patient with active euthanasia proves to be committing physical harm, because it results in the
death of the patient. In such a situation it will be the ethical value which has the most precedent
that should provide an indicator as to what the healthcare practitioner is to do.
Beneficence implies that healthcare practitioners should act in the best interest of patients even
when the interests of the latter conflict with their own personal self-interest (HPCSA, 2008:2). To
expect a healthcare practitioner to make a decision entirely by himself or herself with regard to the
best interest of the patient when it comes to euthanasia is hardly fair. Therefore clear guidelines
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should be set out in legislation as to how healthcare practitioners should go about making such a
decision and what support should be sought in order for them to make the decision, for example,
consulting with an independent practitioner.
With regard to directives of a terminally ill person, the Law Commission also recommended that a
terminally ill person who is over 18 years of age and of sound mind shall be competent to issue a
written directive (End of Life Decisions Bill, 1998:190).
In the absence of a directive however, the practitioner is advised to compare his/her opinion, in
writing, with the findings of at least one other medical practitioner who has not treated the patient,
but who has examined him/her and if the findings are the same the first medical practitioner can
grant authorisation for the cessation of all further life-sustaining medical treatment.
The practitioner may however not act as such when it is against the wishes of the interested family
members of the patient, unless authorised thereto by a court order (End of Life Decisions Bill,
1998:209).
Furthermore the court may grant an order for the cessation of medical treatment if it has given
the family members the opportunity to be heard or if at least two medical practitioners who have
expert knowledge of the patient’s condition have convinced the court that the patient.
The Law Commission also recommended that a medical practitioner who gives effect to an order of
the court shall not incur any civil, criminal or other liability (End of Life Decisions Bill, 1998: 211).
Justice, the last component of the Georgetown Mantra (1996:170), suggests that healthcare
practitioners should treat all individuals and groups in an impartial, fair and just manner (2008:2).
The concept of justice as one of the values can also be used to set limits to autonomy in order
to preserve the greater good. When a healthcare practitioner respects the rights of patients,
colleagues and other healthcare professionals, and also safeguards the patient’s confidences
within the constraints of the law, the value of justice is adhered to (1996:179).
However in our current situation, where a precedent has been set as determined by the South
African High Court decision of Judge Fabricius, active voluntary euthanasia can only be granted by
the court if it accedes to such a request. This option is therefore only really available to persons
with enough money and resources to access the court and to carry the costs. This means that
the value of justice will not be properly adhered to since not all patients will be treated in the same
fair and just manner.
By identifying these four values it becomes clear that we aim to move towards a goal of virtue,
which brings us to virtue ethics.
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5. VIRTUE ETHICS
The values of the Georgetown mantra (see paragraph 4) also imply virtue ethics.
Virtues are neither passions nor capacities but states of character (Ross & Brown, 2009:29). Virtue
ethics are all about making the ‘right’ decision, but how does one, as a healthcare practitioner,
bring about the ‘right’ decision?
Ethical decisions are made daily by healthcare practitioners. Virtue ethics, however, suggest that
the healthcare practitioner does not merely observe in the ethical process of deliberation, but that
they are the living body of ethical practice (Koch and Menezes, 2015).
As previously stated, virtues are states of character and virtue ethics consist of making the ‘right’
decision, thus bringing about a good state of character together with making the ‘right’ decision,
which will lead to a ‘good life’ – an integral part of Aristotle’s philosophy. By living a ‘good life’ we
can reach a state of eudaimonia which is a deep, lasting happiness and a state worth having (Ross
& Brown, 2009:205). For a healthcare practitioner, living in a state of eudaimonia will basically
mean being able to sleep at night (Koch and Menezes, 2015:49).
Pursuing virtue ethics will lead one to make the ‘right’ decision because one is in a state of good
character: this will then lead to living a ‘good life’.
Furthermore it may be argued that the core function of medicine is to improve the well-being of the
patient. If one applies virtue ethics, also known as the Georgetown mantra, when treating a patient
who is terminally ill and who has a wish for active euthanasia, it may be argued that the outcome
will be an improvement for the patient, since nothing else can be done for him/her and a drawn-out
and painful death is the alternative.
Without virtue, ethics is simply an obligation (Koch & Menezes, 2015:49).
6. CONCLUSION
The topic of euthanasia is still uncertain ground upon which we must tread cautiously. To have clear
guidelines one has to resort to basic ethical values and to refine these values until they constitute
virtue ethics, at which point the healthcare practitioner should be the best healthcare practitioner
that he/she can be for the patient; he/she will then respect the autonomy of the patient and will also
to be able to sleep at night because he/she will have made decisions guided by ethical values, even
if the decision concerns an ethical dilemma such as euthanasia. From the discussion above, it is
also clear that arguments based on ethical values can also cause new dilemmas to arise.
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When facing an ethical dilemma, ethical values need to be part of the decision making: as soon as
one implements the decision, new ethical dilemmas may arise, and a cycle of continuous ethical
reasoning with no obvious conclusion ensues.
To solve this problem, legislation should be implemented to govern decisions that have to be
made: yet the very implementation can create further ethical dilemmas. At this point, however,
legislation is the only recourse we have to try and prevent further ethical dilemmas arising from
the implementation of an ethical decision.
Thus it is clear that for ethical values to be properly incorporated into decision making, ethics and
law need to be applied in concert to create a safe environment for both the healthcare practitioner
and the patient.
REFERENCES
Albright, D.E. & Hazler, R.J. 1995. A Right to Die?: Ethical Dilemmas of Euthanasia. Counseling and Values
39(3):177-189.
Beauchamp, T. & Walters, L. 1989. Contemporary Issues in Bioethics. 3rd edition. Belmont: Wadsworth.
Davison S. 2016. Statement by Professor Sean Davison. <http://www.dignitysa.org/blog/>. (Visited on 10

November 2016)
Hadjistavropoulus, T. 1996. The Systematic Application of Ethical Codes in the Counselling of Persons Who
Are Considering Euthanasia. Journal of Social Issues 52(2).
Koch, K. & Menezes C.N. 2015. Virtue ethics: Beyond moral theory. South African Journal of Bioethics and
Law 8(2).
Patients’ Rights Council. 2013. Holland’s Euthanasia Law. <http://‌

www‌
.patientsrightscouncil‌
.org‌
/site‌
/
hollands‌-euthanasia‌-laww/>. (Visited on 10 November 2016).
Ross, D. & Brown, L. 2009. Aristotle’s Nicomachean Ethics. Great Britain: Oxford University Press.
Van der Merwe, S. 2015. Is doctor-assisted suicide now legal in South Africa? Casebook, 23(2).
Verschoor, T. 2013. Etiese en regsaspekte van geneeskunde. Bloemfontein: Universiteit van die Vrystaat.
80
CHAPTER 8
Community-based participatory
research in healthcare:
ethical issues and impact on
healthcare practitioners
Moira S. Lewitt, Pamela Campbell and Beth Cross

COMMUNITY-BASED PARTICIPATORY RESEARCH IN HEALTHCARE
1. INTRODUCTION
Community-based participatory research (CBPR) draws on constructivist and critical theory

paradigms, and uses a range of research methods that are both qualitative and quantitative.
Culturally appropriate engagement is important to the methodology; for instance when working
with children, elements of storytelling and play are incorporated. The distinctive feature of CBPR is
active engagement and influence of community members in all aspects of the research process
(Israel, Schulz, Parker & Becker, 1998). Furthermore there is an explicit commitment to generating
practical change, so that this approach can be regarded as sitting within, or overlapping with, the
field of participatory action research. Indeed CBPR is seen as arising from the action research
school of Kurt Lewin (1946) and the dialogic methods based on critical reflection of Paulo Freire
(1970). In addition to these roots, the self-determination movements of indigenous peoples
have contributed significantly to the development of community participatory research (Cargo &
Mercer, 2008). It is also meets the definition of “co-creation” research that involves researchers
and stakeholders from the onset (Goodyear-Smith, Jackson & Greenhalgh, 2015). A strong benefit
to CBPR is that it builds trust, enhances social networks and improves cultural competency, in
addition to enhancing the rigour of the research. These are important to ethical healthcare practice
because in these ways the process of CBPR can deepen understanding of healthcare practices by
both practitioners and communities members.
This chapter will explore the range of ethical issues that arise in community-based participatory
research (CBPR) in healthcare, with a particular focus on supporting the role of children as
participants in that research. It will explore the literature, and a case study from the authors’
research setting will be used to highlight particular ethical considerations.
2. IMPORTANCE OF COMMUNITY-BASED PARTICIPATORY

APPROACHES IN HEALTHCARE RESEARCH
Healthcare is in a state of transition from a traditionally regulated system centred around institutions
and highly trained healthcare professionals, to one that is more personalised and integrated, and
acknowledges the role of healthcare service users in decisions about the design of services and
information provision. Personalised health relies on a dynamic network of interconnected systems
in different contexts, some of which are outside healthcare-specific legal frameworks (Ruotsalainen
& Blobel, 2015). The relationship of healthcare user to healthcare practitioners and services is also
context-dependent and is sometimes complicated by technological change. Individuals may use
sensors and online software applications, for example, in patient-entity relationships (Ruotsalainen
& Blobel, 2015).
Community-based participatory research (CBPR) in health is defined as
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“a collaborative approach to research that equitably involves all partners in the research
process and recognizes the unique strengths that each brings. CBPR begins with a
research topic of importance to the community with the aim of combining knowledge and
action for social change to improve community health and eliminate health disparities”
(W. K. Kellogg Foundation, Community Health Scholars Programme, 2001:2).
A key feature of CBPR is that it is collaborative and reciprocal: academic and non-academic
researchers work together in a way that is mutually beneficial (Cargo & Mercer, 2008). There is a
focus on improving local practice and quality of life but, from a research perspective, there is also
an obligation to discover generalisable knowledge that is of social value (Buchanan & Wallerstein,
2007). Therefore it is important to strive for a balance between research that yields generalisable
results, and action that has positive local impact (Israel et al., 1998). It is considered a research
orientation rather than a method, with location of power as key. It has been used to place the less
powerful at the centre of the knowledge creation process in order to empower:
“... participatory research fundamentally is about who has the right to speak, to analyse
and to act” (Hall, 1992:22).
As an approach, CBPR strives to be equitable and therefore requires awareness of power relationships
between the researchers and community members or service users (Wallerstein & Duran, 2006).
It seeks to share power between academic and community partners at every stage of the research
process (Cornwall & Jewkes, 1995; Boser, 2006, 2007). Indeed the degree of success of CBPR
may be dependent on group dynamics with the ability of the partnership to manage conflicts,
communicate tasks, negotiate in a participatory manner, bridge culture differences and share power
and resources ranking highly important (Wallerstein, Oetzel, Duran, Tafoya, Belone & Rae, 2008).
It is also a strength-based approach which encourages community members to be aware of their
own assets and build upon these (Morgan & Ziglio, 2007), with social capital being described as
an ‘asset’ for communities and as being positive for health and well-being (James, Schulz & Van
Olphen, 2001; McPherson, Kerr, McGee, Cheater & Morgan, 2013).
There has also been an increase in public involvement in the design and development of public
health services, with co-production of services becoming more prominent (Bovaird, 2007). In
CBPR, since community members are involved throughout the research process, issues are
identified which are important to the local context and the public within a particular community.
Furthermore involvement of the community in interpreting research outcomes will lead to solutions
and interpretations around complex health questions that were unforeseen by the researchers
(Macaulay & Nutting, 2006). In this way community members can have a greater influence on
healthcare policy and practice (Batalden, Betalden, Margolis, Seid, Armstrong, Opipari-Arrigan &
Hartung, 2015).
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CBPR has an importance for children as well as adults (Cross, 2012). In the past decade a great
body of work has focused on children’s rights and participation, which has stemmed from attempts
to implement article 12 of the United Nations Convention on the Rights of the Child (United Nations,
1989). In doing CBPR with children, there is a key focus on developing relationships of trust, using
spaces and activities which children value and are comfortable with for research. It is crucial that
all children be perceived as competent and participating as active contributors in the research,
and that time is taken for relationship building in order for the working towards common goals to
become meaningful (Chawla, 2001; Malone & Hartung, 2010).
While some may perceive that CBPR may have “reduced value”, there are advantages to collaboration
of healthcare practitioners with community participants that may lead to improvement in the quality
of research. Increased response rates because of insider knowledge and the breaking down of
barriers of distrust (Thompson, 2000; Farquahar & Wing, 2008) may contribute directly to internal
validity of the research. There is also a positive impact on external validity, the relevance and
sustainability of the research, and being grounded in the lived experience of community members
(Altman, 1995; Israel et al., 1998; O’Fallon & Dearry, 2002; Gair, 2012).
3. ETHICAL ISSUES IN COMMUNITY-BASED PARTICIPATORY

RESEARCH IN HEALTHCARE
The cardinal ethical principle guiding research with human participants is respect for human dignity.
CBPR clearly aligns well with this, and particularly with the key moral principles of autonomy and
equity; in many contexts CBPR might be regarded as an ethical mandate:
“The more powerful the intervention and the greater the possibility of exploitation, the
more extensive the level of community participation, both in outreach to the community
and in their involvement in all phases of the research” (Buchanan & Wallerstein, 2007:6).
There are implications for the researchers’ ethical approach, since CBPR is regarded as a research
orientation (Minkler & Wallerstein, 2007). Partnership-working of researchers and communities
may lead to unconventional research designs that reflect involvement of the community at all
stages of the research, from design through to dissemination. The varying degrees of power and
control over the research that are held by the community partners impact on the range of ethical
issues that arise. Sources of ‘insider-outsider’ tensions in CBPR are well discussed (e.g. Minkler,
2004; Gair, 2012). Ethical guidelines need to accommodate this and traditional ethical review
processes may not be well suited to these research collaborations (Buchanan, Miller & Wallerstein,
2007; Flicker, Travers, Guta, McDonald & Meagher, 2007). The situated nature of ethics is
paramount and requires responsiveness, for example, to the dynamics of power relationships
between various stakeholders. Therefore, in addition to the principle-based approaches to ethics
84
‘regulation’ of conduct, CBPR projects require awareness of virtue ethics and ethics of care
(Banks, Armstrong, Carter, Graham, Hayward, Henry, Holland, Holmes, Lee, McNulty, Moor,
Nayling, Stokoe & Strachan, 2013). This means that attention should be paid, not only to how
the partnership between researcher and community is established, but also how it is reviewed
as relationships change and power is negotiated. There is also a challenge in ensuring that ethics
review accommodates emergent designs, where defining research questions, methodology and
dissemination strategy are part of the research project (Goodyear-Smith et al., 2015).
In CBPR the whole community should be considered a subject of research and ethical considerations
should encompass respect for community as well as for individual autonomy. Indeed, it can be
argued that self-determination requires that an individual is situated in, and derives their values from,
a community. Indeed, it can be argued that the protection of the community is in the individual’s
interests (Weijer, 1999). Research may have an impact on the beliefs and values of a community.
Community beliefs around traditional healing, for example, may be challenged by healthcare
interventions. Seeking informed consent from individuals may be problematic in a community that
makes decisions collectively (Weijer, 1999) and dilemmas arise when the consent of individuals
within communities and the community as a whole do not align with the need for higher level social
change (Hall, 1992). In some communities signed consent can serve to heighten distrust (Johnson,
Ali & Shipp, 2009), and verbal consent may be perceived as having higher value. Considerations of
the community as a unit of identity encompass the socio-cultural norms and values that influence
the research; this is of particular importance in indigenous communities with traditional health
beliefs (Johnson et al., 2009; Stordahl, Tørres, Møllersen & Aira-Åhren, 2015). Development of
CBPR has been influenced by the increasing recognition of the rights of indigenous peoples and
other vulnerable communities to self-determination of interest and identity. This is reflected in the
guidance from a number of national and international organisations; for example:
“… there should be a fair balance of risks and benefits amongst all role-players involved in
research, including participants, participating communities and the broader South African
society” (Department of Health, 2015:14).
“The research proposal should demonstrate evidence of respectful engagement … this

might require letters of support from Aboriginal and/or Torres Strait Islander community
Councils…” (National Health and Medical Research Council, 2007).
“… a study of sensitive topics or behaviour (illicit drug use; domestic violence; etc.) may
merit review because of its potential effects on a community or group even if the data were
to be recorded anonymously” (Council of International Organisations of Medical Sciences,
2008: 8).
Alternative approaches to ethical review have been recommended and these include guidelines to
facilitate reflection on ethical issues by researchers before, and also during the research process.
85
Flicker and colleagues (2007) suggest mandating that CBPR projects seeking ethical review
should provide memorandums of understanding that outline the goals, partnership principles and
partners roles, decision making processes and guidelines for handling and disseminating data.
There should also be a requirement to document the processes through which key research design
processes were made and the communities most affected consulted.
A further recommendation is that partners develop a set of codes for the research that includes
an ethical framework that protects the community as well as individuals (Macaulay & Nutting,
2006). Indeed the process of drawing up such guidelines is likely to strengthen the partnership and
therefore the research. An innovative Code of Research Ethics was developed for a participatory
research project with a native community in Canada that included a clause in covering the
community’s right to dissent (Macaulay, Delormier, McComber, Cross, Potvin, Paradis, Kirby,
Saad-Haddad & Desrosiers, 1998). It has been recommended that communities and populations
have the right to a voice in more powerful community interventions through a Community Advisory
Board (Buchanan et al., 2007), including in work that affects their identity (Gostin, 1991).
CBPR recognises the rights of children to be heard and their opinions sought. Some of the ethical
issues arising in CBPR with children are highlighted by the following case study.
Case Study: Hearing children’s voices in a community weight management programme
Families completing a community-based lifestyle weight management intervention for overweight

children aged 3 to 16 years decided to establish their own programme with the aim of supporting
each other to continue their health improvement. Older young people (aged 16 to 22 years) provided
leadership for the group, primarily by facilitating physical activity through sport and games. The
local council and researchers at the University of the West of Scotland were invited by the group
to facilitate further development of the initiative one year after the group was established. Risks
to the group were minimised through relationship building to ensure that adults and children felt
comfortable to express their attitudes and ideas for the research, and what they felt was useful for
their own group.
The primary researcher used a long-term ethnographic approach, attending a variety of group
events over an 18-month period, sometimes weekly. Participatory approaches were incorporated
for children, families and leaders to actively contribute to ideas for development of the group,
including research questions and methodologies. The children were presented with opportunities
to select the methodologies that they wanted to use for the research, as well as for evaluation.
They explored the positive and negatives of using photography, drawing, interviews, mapping and
video diaries. The activity also included a ‘something else’ option to share ideas for approaches
that were not offered by the researcher. The children selected photography, drawing and mapping.
Further negotiation was done over the period of research to hone each method to mutually
86
agreed on benefit, for instance photography could be used to explore how community weight
management programmes can help families in their daily lifestyle changes and how families
engage with opportunities in the community to facilitate this, whereas mapping could be used
to map the community in which they live or to document the process of research. In negotiating
the use of methods it became clear that different members of the group had different views,
with parents being much more reluctant to photograph children’s activities outside the meetings
than the children were. As a compromise, photographs of activities in the sessions were used
to document choices and activities. These photographs helped to provide a basis for discussing
unequal decision making and its consequences for younger children.
Group leaders across a range of levels of experience had explained to the researchers that they
wanted to use children’s ideas in the sessions. Leadership training had been provided to the
younger leaders, and it was believed that this helped them to appreciate young children’s views.
Children’s ideas communicated through participatory activities were communicated by the
researcher to the young leaders. There was however a hesitancy for these leaders to use these
ideas in practice. This highlighted an area to be further evaluated by the researcher, and one in
which the group themselves could develop to increase the likelihood that children’s voices were
being heard and incorporated.
Consent was obtained at the start of the research from all participants, children, families, group
leaders and facilitators from the local council, and at regular intervals throughout the project, to
ensure that members of the group were happy both for the researcher to be present and with their
own involvement as active contributors. However the researcher was aware that throughout the life
of the project other individuals might be present, such as families considering joining the group in
the future, from whom consent had not been obtained.
The researcher is a young, white, Scottish female, only slightly older than some of the leaders
within the group. Dressing casually and speaking in ‘child friendly’ language, she was aware not
to present herself as a leader figure. At the start of the project the researcher would be asked
questions by the children as if she had a leadership role, and she would refer them immediately
to a leader. In this way boundaries were soon clarified and this dynamic was no longer evident.
The researcher adopted a reflexive approach throughout, being continually aware of the dynamics
within the group and how her attendance has affected these dynamics. Field notes and reflections
on data collection provided the researcher with an important opportunity to reflect and consider
her impact on the group. Initially the researcher documented field notes during the group sessions,
however since the children regularly expected her to participate actively in games and activities, it
was decided that field notes would be recorded after the session.
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Group members observed positive benefits of the research and perceived children as having a
voice through the research. They have gone on to further develop the research in their own group
setting, independent of the lead researcher, with similar activities and methods, and use the results
to develop their programme.
In this case study, the researcher’s involvement with a community group highlighted ethical and
methodological challenges in CBPR, particularly in relation to children. Guidelines for research
involving human subjects stipulate that standard practice is to obtain consent from the parent(s) or
guardians(s) of children. When the research or healthcare intervention is situated in a community
setting, information, protocols and consent should be designed to meet the needs of all age groups
and contexts, and consideration should be given to formally reviewing each of these throughout
the research process. Obtaining informed consent from children is also important. In the case
study, consent was obtained at the start of the research and at regular intervals throughout so
there was a constant negotiation of ideas and interests (Dockett & Perry, 2011; Fine et al., 2000;
Renold et al., 2008; Warin, 2011). In CBPR there are challenges to issues of anonymity and
confidentiality, as well as to consent, since most ethical guidelines and procedures appear to draw
a line between researchers and individual subjects of research. In this collaboration the group
was not static and other individuals, such as families considering joining the group in the future,
were sometimes present. This posed an ethical challenge around defining the boundary of the
community and therefore the project and ethical consent were not as neatly defined as the ethical
protocols were constructed.
The approach of involving children from the outset of the research is often overlooked and it is
usually the researchers and other adults involved who choose and select which methods they want
children to use. Morrow and Richards (1996: 98) have stated that the “biggest ethical challenge
for researchers working with children…is the disparities in power and status between adults and
children”. In this case study we used an approach that involved children from the start as active
contributors in research that helped reduce the level of power held by the researcher. The case
study also highlights the disparities in power between younger children and older children (the
group leaders), and how this can impact on children’s voices being heard. It is important to look
at the factors that contribute to this as they hold lessons for research that empowers communities
more generally.
Lessons from the UNESCO World Symposium on children’s participation in community projects
are important to consider. In tackling the thorny issue of young people’s differing developmental
experiences and processes, the developmental psychologists taking part in the symposium
summarised the best approach to take as:
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“… to assume competence in some degree, and to ask at every age: what support can be
provided to enable children to participate to the best of their ability?” (Chawla, 2001: 12).
What would this mean for the case study under consideration? Social contextualisation is important
to consider to begin to understand the dynamics at play. One of the crucial pre-conditions for
empowering those with less power in a group is to recognise this power imbalance (Gair, 2012).
Asking people whose own increased power is relatively recent, and in many respects fragile, to
put themselves back in a position of having less power in order to understand how those they
are leading might want to be led is not an easy ask, regardless of the ages of those involved. If
one’s previous experience of social settings is that those with less power are bullied, opting to re-
experience a position of less power may make even less sense. To begin to understand if this kind
of leadership is something the older young people wanted and felt comfortable doing would take
very sensitive facilitation. A cursory discussion of broad principles of respect are unlikely to be
enough of a foundation. Visual methods and embodied methods such as forum theatre techniques
can open up people’s lived experience and give them the tools to express embodied knowledge
of what respect looks and feels like as well as what it feels like when it is lacking. It is this level
of sharing experience which can open up to change embedded patterns of disempowerment that
otherwise may simply be reinforced. These tools can then be a resource for looking at tensions
throughout the life of the group. Kesby (2007) cautions that even these techniques have their limits,
particularly if sensitive health issues are being explored. There will always remain a difference
between what can be made public and what remains a matter of private or internal negotiation.
It has to be stressed that the skills of facilitating discussions on power and leadership as such are
not skills taught as a rule in post graduate research courses in health or social sciences faculties.
These are craft skills, i.e. skills learned and refined through experience, learning from more skilled
facilitators as well as through one’s own work. Time is required to encounter a range of responses
and group dynamics in order to have a robust understanding of them and of one’s own capacity
to work productively with them. This is not to say that health researchers should shy away from
attempting to use these methods. It does mean they should not underestimate the importance
of making those who have these skills, be they community members, community workers, or
experienced researchers, part of a research team. It does require a high level of teamwork and a
willingness on the part of researchers to take part reflexively themselves in forum theatre group
processes. Over time these skills can become part of the wider research culture as their importance
becomes recognised. This in itself is an ethical goal worth achieving.
Within this case study the visual methods did allow younger children’s views to be recorded and
referred to in discussions. The group leaders and the children perceived these methods as useful
and beneficial; if this had not been the case it could have had a negative impact on the group itself
and how they moved forward after the research was finished.
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Another ethical consideration was the researcher’s positionality. Although the researcher did not
position herself in the same way as adult leaders (Mandell, 1988), the children still recognised
her as an adult. Therefore the researcher intentionally engaged in different ways with the children
compared to other adult or leader figures in the group (Christensen, 2004).
4. IMPACT OF COMMUNITY-BASED PARTICIPATORY RESEARCH ON

HEALTHCARE PRACTITIONERS
When community members are active partners, raising research questions, approving and
owning projects and disseminating results, there is likely to be a greater impact on healthcare in
communities. However it requires that healthcare practitioners relinquish control in a number of
areas from the start, negotiating the research partnership and adapting the research methodology
to maximise community benefit. Even the naming of the project becomes a matter of collaboration
(Thompson, 2000). This constant balancing of priorities for two usually separate communities,
the participants and researchers, is challenging. In CBPR the researcher is by necessity also
a participant and this challenges requirements for objectivity of research, since all researchers,
professional and community, are focused together on promoting health and healthcare. This
requires that healthcare practitioners shift away from positivist research paradigms (Hall, 1992)
and an agenda driven by professional interests, institutional agendas and funding priorities, to
one that is owned by the local community, and where the methodologies chosen aim to empower
local people (Cornwall & Jewkes, 1995). There are inevitably tensions that arise from the fact
that researchers are rewarded more for their individual creativity and expertise, and publication in
peer-reviewed journals.
Power differentials will have an influence on how research questions are framed and what
decisions are made (Israel et al., 1998). Since the academic researcher may be the dominant
voice, it is important that explicit efforts be made to reshape this to establish “equitable power
relationships” (Schulz et al., 1998). Indeed it is possible that building power in the community
will itself have a direct impact on health, including cases where feelings of powerless lead to
poor health (Wallerstein, 1992). CPBR requires that healthcare workers relinquish some of their
power and strive to acknowledge the expertise, resources and perspectives of all participants.
This may involve “letting go” of primary leadership of a project and allowing a shift to a balanced
partnership model or even one where the main authority rests with the community (Macaulay et al.,
1998). A relinquishing of sole ownership of the research outcomes, to shared ownership, is also
necessary in CBPR (Corwall & Jewkes, 1995). Since the outcomes are of value to the community,
local knowledge should inform use of the work, including dissemination strategies. This level
of collaboration involves flexible research designs and the removing of the distinction between
academic and non-academic participants that could lead to tensions. Academic researchers
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may express concerns about data being used prior to peer-reviewed publication, for example
(Israel et al., 1998; Minkler, 2004).
The treatment of research as ‘lived experience’ by CBPR requires a strong reflexivity by healthcare
practitioners.
“Cultural humility and critical self-reflection, especially from high status… may be critical
to high emotional and social capacity, trust and empathy, and a successful partnership”
(Wallerstein et al., 2008: 382).
The context of healthcare is usually complex, often involving multiple organisations and discipline/
professional groups. Healthcare practitioners should be aware of these complexities and of the fact
that evaluation healthcare research in communities usually involves the assessment of multiple
interventions simultaneously, in an open, dynamic system (Buchanan et al., 2007).
5. CONCLUDING COMMENTS
As healthcare research moves from working ‘on’ communities to working ‘with’ communities,
a concomitant shift in the ethical orientation of healthcare practitioners is required. In CBPR
tensions may arise between the community and researchers because of competing expectations
and values. Nevertheless researchers should not lose sight of their academic goal to produce
generalisable knowledge alongside the objective to improve healthcare and empower the
community partner. Efforts should be made to create active community partnerships and ensure
alignment of expectations amongst all partners. This requires developing relational practice skills
and incorporating negotiation and discussion skills. When working with children there is a further
need to work sensitively with power dynamics. An important way of levelling the playing field is
to incorporate playful and creative means of facilitating each phase of research from deciding the
focus and design to implementing, analysing and reporting. There is a need for researchers to
be reflexive in CBPR, especially in relation to ethical practice and review, due to shifts in power,
changes in dynamics and the possibility of unexpected issues arising during research.
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CHAPTER 9
Ethical decision making
processes
Willem H. Kruger
Ethical decision making processes
1. INTRODUCTION
Healthcare workers deal with people in a state of vulnerability who trust that their needs are put
first. Such a relationship is what makes ethics particularly important in healthcare.
Ethics in healthcare is not all that different from ethics in everyday life, although some unique
situations may arise. Healthcare workers tend to focus on what is right or what is in the best
interest of the patient. However, ethics is not that simple and cannot be explained in terms of what
healthcare workers think is good or right. It is not just all about the actual decision making process
but rather about putting everything into context. Therefore, the issue is all about constructing ethics
with other people. Ethics is the intricate matrix of comprehension and communication we as human
beings co-construct. Ethical practice is not just a function of rational thoughts but is an embodied
process. Because ethics is an inherent part of being human, it is important to have a more human
understanding and practice of ethics. Therefore, it is essential to understand the fundamentals of
ethics, including normative ethics. In normative ethics, the focus is the determination of a set of
acceptable standards for right or wrong behaviour.
The purpose of this chapter is to provide healthcare workers with essential information to
understand and to shorten the process of ethical decision-making. It is not the purpose of this
chapter to provide healthcare workers with a quick solution to the ethical dilemmas although it is
often necessary for healthcare workers to make quick ethical decisions. Healthcare workers must
remember that each and every situation is different and therefore several frameworks are provided
in this chapter that could be used to simplify the decision-making process although it may not be
the ideal.
2. LOOKING MORE CLOSELY AT ETHICS
There are two theories of ethics applicable in healthcare namely utilitarian and deontological
ethics. Although there are other applicable theories discussed in the literature, these two theories
are well known and used within healthcare.
Utilitarian ethics is based on the premise that an action or practice is right if it leads to the greatest
possible balance of good consequences or to the least possible balance of bad consequences.
Deontological ethics focuses on binding obligations or duties in which there is a justification of

principles and actions irrespective of the consequences. In other words, an act is right if and only
if it conforms to an overriding moral obligation, and wrong if it violates the overriding moral duty or
principle. In this perspective, persons are valued for their inherent worth and are to be treated as
ends in themselves and never solely as a means to the ends of others.
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Although normative decision making models may assist the healthcare worker to know what they
should do in certain circumstances, it is not yet clear whether this knowledge actually translates
into ethical behaviour in healthcare.
3. HEALTHCARE ETHICS
Bringing ethics into healthcare, patients’ safety and well-being, amongst other things, are
dependent on the ethical decisions made by healthcare workers. In order for healthcare workers
to provide responsible healthcare, the healthcare workers have to be competent in ethical decision
making. The healthcare worker should not rely solely on his or her excellence in clinical knowledge,
experience, expertise and skills to provide healthcare of a high standard.
It is therefore not surprising that the opinion exists that a healthcare worker who has low or non-
existent ethical standards should be considered unfit to practice. Therefore also, there could
be a concern about the ethical competency of healthcare workers because they often adopt
inconsistent decision making processes or reach inconsistent ethical conclusions in attempts to
resolve identical ethical problems.
One of the main reasons for this concern is the fact that ethical dilemmas experienced in the clinical
setting may not be the same as those that the healthcare worker will be confronted with in their
daily lives. The implication is that the ethical norms learned in their earlier years, including those
as a child, are not sufficient to resolve these sometimes complicated clinical ethical dilemmas.
To some extent the healthcare worker considers the applicable ethical principles in the attempt
to identify the best possible and morally-justifiable resolution while prioritising the interests of
the patient. However, the concept of “to some extent” is not sufficient to make consistently high-
quality ethical decisions.
Ethics is not all that straight forward, as mentioned earlier in this chapter. It is entirely possible for
conflicts in ethics to arise when the actions of a healthcare worker have an impact on the beliefs of
a patient, or vice versa. Sometimes, in such a scenario, it is not possible to decide who is right or
who is wrong; it is however the healthcare worker’s ethical responsibility to resolve the dilemmas
to the best of his or her ability. It is evident that several role players are involved in the ethical
decision making process and therefore ethical practice is not only a personal process but also a
professional as well as a socially mediated process.
Ethical decision making in healthcare can be described as a process where a healthcare worker
is required to make an appropriate decision about a morally toned dilemma with the consideration
of the presence of the ethicality surrounding the situation. It is based on four components: ethical
awareness, ethical intention, ethical judgment and ethical behaviour. Hence, it is a central aspect of
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ethical decision making to define and support the “best” solution. Practitioner-patient relationship is
one of the cornerstones of quality healthcare delivery and these four components could contribute
towards an ethically sound practitioner-patient relationship (see also Chapter 4). It is embedded
within ethical norms, mutual trust and respect, where the patient has an abundance of confidence
in the healthcare worker. Medical ethics is used to guide healthcare workers in choosing the correct
option when dealing with philosophical problems encountered routinely in the practice of medicine.
It can be concluded that ethical issues, including the ethical decision making processes, are
characterised by complex, dynamic interactions with multiple, often competing goals and
guidelines where resolutions are not readily apparent. The approach to the decision making
process can further be complicated when decisions involve complex situations, conflicting ideals,
vague or non-existent guidelines, and strong emotions. Therefore, the ethical decision making
process cannot be done by using only a set of standards or guidelines or even simple rationales
within a model.
Ethical decision making is considered to be an abstract exercise with an exploration of both

problem evasion and problem solving. Therefore, it is important to revisit a few definitions before
the actual ethical decision making processes are discussed.
4. DEFINITIONS AND CONCEPTS
Ethics can be viewed as a systematic reflection on and analysis of morality and it is considered
to be a fundamental part of the life of all the people in a community. Therefore, it is possible that
ethics is a requirement for human life because it is way that society organises its goals so that
it can demonstrate the core values; this means that a society cannot be without its core values.
As an additional explanation, morality is a systematic sustainability of relations between human
beings and how they can live in peace and harmony. Morality also refers to the value dimensions of
human behaviour and decision making. It is agreed that it is possible for people to recognise some
common ethical norms within societies. However, communities consist of individuals with their
own unique moral principles and values. Therefore it is possible that individuals might interpret,
apply, and balance these norms in different ways, taking into consideration their own values and
life experiences. Despite having their own unique moral principles and values, it is important that
individuals should not seek to impose such unique principles and values on others.
Another definition of ethics considers the principles, norms, and standards of conduct governing
an individual or group (see Chapter 1). This approach to ethics suggests that there are guidelines
related to ethical conduct within societies. Therefore, ethics refers to those rules of conduct that
direct people to act in a manner consistent with the values they profess. These rules are referred
to as codes of ethics, with the intent to serve as a guide to everyday professional conduct. All
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healthcare workers are required to adhere to the specific code of ethics relevant to their line of
work. At the same time, it is important for healthcare workers to note that being ethical by adhering
to the relevant code of ethics is not necessarily the same as following the law (see Chapter 1).
It is stated that ethics and the law are not the same. Some professionals are of the opinion that
legislation often serves as the starting point for ethics, or serves as the minimum standard for
ethical behaviour. Communities might argue that ethics has higher standards than legislation
therefore it is possible that ethics might challenge unjust laws. other hand, legislation should not
just be considered as the only guideline to set the
A last concept to understand is the term sense making. The term describes how the healthcare
worker deals with unique situations in his/her field of practice that are characterised by equivocality
and uncertainty, and how he/she makes sense of competing streams of information by composing
them into a useful framework to facilitate decision making and action.
In order to understand the various concepts as well as the definition of ethics, it is important
to review the key ethical principles of autonomy, beneficence, justice, non-maleficence, and the
duty to protect, as well as the practical implications in healthcare (see the concepts informing the
Georgetown mantra).
Autonomy
Autonomy refers to the right of an individual to self-determination. People should be able to make
their own free choices. The concept of autonomy involves liberty, the responsibility for personal
behaviour, freedom of action and freedom of choice. In the healthcare arena, the principle of
autonomy grants the patient the right to make informed choices about interventions without coercion
or undue influence. Essential to autonomy is the need for full information so that the choice is
informed. Healthcare workers should not presume to make decisions for others, especially relating
to acceptability of risk, and should not withhold information necessary for others to make choices.
Beneficence
The concept of beneficence entails doing good for others by contributing to and promoting overall
human health and welfare.
Justice
Related to beneficence, the principle of justice can broadly be defined as striving for fairness.
Ethical practices and decision making strive for fairness and justice. Issues of justice include
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ensuring equal access to psychological services, respect for human rights, client dignity, and
limiting unreasonable and unfair treatment.
Non-maleficence
Very relevant to healthcare and related to justice and beneficence, the concept of non-maleficence
comes from the Hippocratic Oath to ‘above all do no harm’. The concept of ‘to do no harm’ is not
a stand-alone concept and some authors such as De Vries and Verhagen (2008) regard it as a
meaningless slogan except when it is placed in context .For example the ultimate goal of medicine
can be twofold, namely to promote quality of life, as well as to increase the length of life. In order
to apply the ‘do not harm’, healthcare workers need to put it into perspective by adding a third
dimension to the ultimate goal and that is the fact that healthcare workers should also consider
whether the life in question is a life that is, or will be, worth living. Only when all three aspects are
put into context, can ‘do not harm’ have a meaningful impact.
Duty to protect
The duty to protect refers to the clinician’s responsibility to protect the client’s (or an identified third
party’s) welfare when the healthcare worker knows that a patient poses an imminent risk of danger
towards him or herself or an identified third party.
Despite the clear key ethical principles as mentioned above, healthcare workers should acknowledge
that providing healthcare is not without ethical conflict. It is important to identify possible sources
of conflict that could arise. Such causes could lead to negative conflict which can complicate the
ethical decision making process. The healthcare worker should take note of the possible sources
of conflict especially when dealing with ethical issues. The following paragraphs provide a short
explanation of some of the sources of conflict:
Pluralism – meaning not all people are the same.
Value – a concept considered to be very important and is usually named in a single word (freedom,
courage).
Principle – an expression of values, duties, rights, etc. A principle is usually expressed in the form
of a sentence.
Uncertainty – about the future, facts, outcomes and circumstances. Examples are new issues and
development in healthcare such as termination of pregnancy, patient rights, and confidentiality.
There could be also uncertainty about ongoing issues such as euthanasia and corruption.
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In conclusion to this section on definitions and concepts, it is evident that ethics cannot be explained
in one simple definition. Furthermore, researchers such as Cusveller Ivanhoe and Postow (1998)
suggest ethical pluralism, or applying diverse ethical theories and perspectives in decision making,
as one ethical theory or perspective is unlikely to be a universal remedy for each and every ethical
problem. In addition it is recommended that diverse guides for ethical decision making to be used
in collaboration in the decision making process. Such diverted guides include the ethical principles
as discussed, ethical professional rules, code of ethics, comparable case studies, as well as
healthcare workers’ conscience.
5. ETHICAL DECISION MAKING MODELS
Structured models for ethical decision making is not a new phenomenon and several such models
have been developed over the years. The main aim of a number of these models is to assist with
the actual decision making process by breaking down the decision making process into steps that
the decision maker can follow. The result is that the decision maker is guided through a prescribed
rational route in order to make an eventual decision with the relevant responsibility. However,
many of these models do not take into account the full complexity of ethical thought and practical
dilemmas. Healthcare workers need to acknowledge the complex and multiple influences on the
ethical decision making process. In the process of acknowledging the mentioned influences, the
healthcare worker will be better prepared to address the unique ethical dilemmas to be found in
the healthcare environment while taking more informed and responsible ethical decisions. It is
not the purpose of this chapter to discuss individual models but it is the opinion of researchers
that such systematic decision making models could assist people to have a better understanding
of an ethical issue that might occur. However, with such a variety of models available, it is not
always an easy task to promote certain models based on their strengths or weaknesses. Also
nobody can predict which model is more widely accepted by healthcare workers. Nevertheless,
during the process of ethical decision making it is important to accumulate as much information
as necessary. By making use of such an acceptable model it should allow for the accumulation of
valuable information, making the ethical decisions easier and more appropriate.
The value of ethical decision making models should not be underestimated, as illustrated by the
following discussion on a few of these types of models. It is not the purpose of this section to
recommend a specific model but rather to look at the implications of using models in the decision
making process.
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Theory-based models of ethical decision making

Several models have been developed that rest on a theoretical or philosophical basis. These
models offer an important contribution as they defend against the accusation that ethical models
often fail to take into account the complexity of meta-ethical perspectives, and as a result fail to
respond to the complexity involved in making ethical decisions. A specific philosophical model
includes two levels of thinking – a level that is concerned with rights and duties, and a second level
that is concerned with attending to the interests of patients and based on utilitarianism.
Practice-based models of ethical decision making

In addition to the theory- and philosophy-based models, practice-based models for ethical
decision making may be used. The difference with practice-based models is that such models
offer a distinct line of inquiry by focusing on the how of the decision making process. When using
a practice-based model, the healthcare worker will be able to follow a sequence of practical steps
in order to come to a final ethical decision. Such an approach will probably ensure that an outcome
of the ethical decision process can be considered as ethical sound.
It must be emphasised that it is possible that practice-based models may not give sufficient
consideration to explanatory frameworks for the decision making process itself. However, the
strength of these models lies in their attempt to apply and translate theory into practical steps.
Healthcare workers must take into account that the result of the implementation of practice-based
models may be only to evaluate a situation, rather than ending up with a final decision. On the
other hand, practice-based models cannot be dismissed merely for the reasons discussed in
this section. It has been stated that professional ethical codes can be considered as examples
of practice-based models for decision making. It must be noted that good decisions are usually
taken if they are based on acceptable practice theory. When combining such an approach with the
values of the any healthcare worker, such healthcare worker should be able to make sound ethical
decisions within their professional capacity.
Process-based models of ethical decision making

The main focus of the process-based models is actually on the processes to be followed in the
ethical decision making. Such models however, often don’t offer a comprehensive theoretical or
practical framework. At the same time, process-based models may be considered prescriptive
or normative with their focus only on strategies to be followed. Therefore, ethical principles are
interpreted and applied within our relationship between knowledge and the actual decision making.
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Integrated approach
Not all the ethical decision making models are as effective as they appear to be. The reason for this
is that these models do not explain how each step or process should be accomplished or which
other factors should be considered. The main focus of such models is on the processes itself,
while the context in which decisions are to be taken tends to be ignored. The result is that applying
a single model in practice is often not very useful. Therefore, it is recommended that the healthcare
worker rather consider a more systematic analysis of the ethical issue at hand. Such an approach
attempts to move the ethical decision making process more towards a simplified step-by-step
approach. Below is an example of a simplified step-by-step approach.
■■ Step 1. Any ethical decision making process starts with perceiving the problem. It is important
to state the actual ethical problem clearly.
■■ Step 2. Additional information collection and analysis of the problem. It is important to decide
what kind of information is needed from each role player.
■■ Step 3. Develop alternatives and analyse and compare them. This is one of the important
steps in the decision making process because all individuals affected by the decision share the
necessary information. The problems and/or reasons for conflict should be clearly described.
■■ Step 4. Select the best alternatives and justify the decision. The main objective of the ethical
decision making is not just to identify the best solution for the problem but to make the best
decision with which most parties (if not everybody) will be satisfied.
■■ Step 5. Strategies to implement the chosen alternative and take action must be developed and
implemented. Once a decision is taken, everybody must take responsibility. Therefore, all of
the healthcare workers involved have to be actively involved in the development of the best
strategies and action plans to implement the chosen ethical decision regardless of whether
the final decision is the one he or she originally intended.
■■ Step 6. Evaluation. The development and implementation of the strategy in an action plan
(Step 5 above) is not final last step in the decision making process. It must be remember that
healthcare workers need to evaluate not only the effects of any chosen ethical decision but
also the actual decision making process itself.
In summary, Williams (2000) proposes the following ethical decision making framework that
could be applicable and used effectively within the healthcare industry. It is called the RESPECT
framework:
R Recognise moral dimension of problem
E Enumerate guiding and evaluative principles and policies
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S Specify stakeholders and their practices
P Plot various action alternatives
E Evaluate alternatives
C Consult or involve stakeholders as appropriate
T Take decision that, all things considered, is the best
6. ETHICAL DECISION MAKING CHECKLISTS
In addition to the models as discussed above, healthcare workers can also use the following
checklists to assist them with the ethical decision making process. In order to guide healthcare
workers in an industry often confronted with ethical dilemmas, healthcare workers should
continuously ask themselves the following questions:
Ethical checklist 1:
The main focus of this first checklist is on the patient.
■■ Am I respecting the patient’s autonomy and not restricting choices?
■■ Am I respecting the patient’s self-image?
■■ Am I honest with the patient?
■■ And if I am not honest, at this time, can I justify it?
The second checklist is a combination of three questions involving legislation, the patient and the
healthcare workers.
■■ Is it legal?
■■ Is there any legislation or are there policies and procedures to guide me in the decision making
process?
■■ Is it balanced?
■■ Are we looking at a win-win situation for both sides if a specific decision is made?
■■ Would I be proud?
■■ After making the decision, would I be proud of what I decided?
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The dominant ethical consequences to consider should ultimately be:
■■ utility
■■ cost-effectiveness
■■ quality of patient care
■■ quality of life
This checklist is based on the key ethical principles as discussed previously in this chapter.
■■ Beneficial:
■■ All decisions should be aimed at improving the patient’s condition and ensuring quality patient
care.
■■ Non-maleficence:
■■ The healthcare worker should ensure that all decisions avoid any harm to the patient.
■■ Justice:
■■ Equal to all people. One needs to be careful because justice for the one could mean an
injustice for another.
■■ Autonomy:
■■ Before making the decision, the healthcare worker should consider the issue of autonomy
because of the possibility of provoking disagreement within the medical profession.
7. PROFESSIONAL ETHICAL GUIDELINES
Professional ethical guidelines (codes of ethics) are sets of rules and principles to be used to
guide healthcare workers when confronted with ethical dilemmas within their professional practice.
These are preferences that are systematically presented as a list of principles that “prescribes
and explains the obligations for good, right conduct on the part of professional members.” Each
country’s relevant professional associations should have such a set of principles, or code of
ethics, and these codes are designed to articulate the standards of practice for a specific group
of people. Therefore, codes can be viewed as a manner to express the collective values of a
specific profession.
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For a very long time, healthcare ethics has been guided and dominated by using these specific
codes of ethics along with ethical principles in order to assist healthcare workers with the ethical
decision making process. However, it has become increasingly evident that ethical decision
making and subsequent actions involve more than just applying the mentioned codes, principles
and models. Furthermore, authors are of the opinion that these guidelines are often presented as
linear, progressive models of decision making, facilitating first order change which traditionally
focuses on changing the problem as defined by the system. It is suggested that these guidelines
should rather facilitate recursive or systemic ones that bring about second order change. Second
order change processes traditionally focus on changing the system and should have a bearing
on therapy, research, as well as on the actual ethical decision making processes. The American
College Health Association (ACHA) (2010) is also of the opinion that no code of ethics can
encompass every potential ethical dilemma faced by a healthcare worker, but the specific code
of ethics for a session should be considered and used as a blueprint for laying the foundation for
ethical decision making within a specific healthcare profession.
8. ADDITIONAL FACTORS TO CONSIDER
As mentioned earlier, the models and steps as discussed above do not always take into consideration
all the necessary factors in order to come to a final decision. When the healthcare worker is
considering an integrated approach, there are several factors that needs to be considered. Such
other variable factors could include cultural context, the law, specific circumstances, and likely
outcomes, to mention but a few. These factors will impact on the final decision and ethical practice
of the healthcare workers. Some of these factors are described in the following paragraphs.
Morality
Ethical decision making cannot be done without considering morality. Five values are important
in assessing the moral discourse: (i) caring and compassion, (ii) self-determination, (iii) human
diversity, (iv) collaboration and democratic participation, and (v) distributive justice. It should be
mentioned that moral reasoning involves logical rather than chronological thinking. Four major
psychological processes were introduced to enable people to behave in a moral fashion even
with different starting viewpoints, namely awareness, judgment, intention and behaviour. Moral
awareness means the healthcare worker acknowledges the existence of an ethical dilemma. Moral
judgement is the next process, meaning that the healthcare workers must decide what is right.
This process is viewed as critical because it is all about moral reasoning. The healthcare worker
must take into account that moral reasoning is informed by the set of knowledge, beliefs and
assumptions that healthcare workers carry with them. Lastly, moral intent or ethical behaviour
is actually all about doing the right thing. In summary, moral principles and codes can only be
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guidelines for ethical decision making purposes. It is suggested that healthcare workers should
constantly be refining their ethical behaviour to achieve ethical maturity. In order to achieve this
maturity, active participation is a key activity. With active participation comes personal experience
which will result in case-based, experiential knowledge. The question may be posed as to whether
the same quality of knowledge regarding ethics can be gained without having the necessary
personal experience in ethical decision making.
Communication
The core business of healthcare workers is to take care of patients and therefore it often
happens that healthcare workers consider communication as a given. However, communication
plays a strategic role when it comes to the ethical decision making process. It is stipulated that
communicative ethical theory puts dialogue at the centre of decision making processes. The
following question is often asked and should be considered by the healthcare worker when dealing
with an ethical decision making process: How does this view influence the understanding of moral
development as a manifestation of dialogue/communication?
Social context
Ethical decisions are not made without any personal contact and should be placed within a specific
social context. There is an agreement that ethical decisions should involve a process of acting
according to consensual reality (consensualising). Ethical conceptualisation should also take
place within context while considering the political, philosophical and social reality surrounding the
ethical decision making process.
Personal factors
Personal factors cannot be ignored as these could play an important role in ethical decision making.
The complexity of personal characteristics is the key to ethical decision making as it involves
choosing from alternatives in responding to ethical dilemmas. Some of these characteristics
include personal value systems, perspectives of the health professional-patient relationship
(paternalistic mode vs participatory mode vs advocate, for example), role responsibility, decision
making styles, level of cognitive moral development, ethical orientation, and demographic profile.
Taking into consideration all of these personal factors, healthcare workers bring to the ethical
decision making process “a proclivity toward selecting choices of action that are in line with their
personal preferences, professional roles, commitment to laws and policies, practice experience,
motivations, attitudes, and other individualized perspectives” (Mattison 2000). The healthcare
worker must remember that apart from these personal factors, other factors such as organisational
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characteristics including organisational culture, policy, line of authority, and communication system
are also important. These organisational factors should not be regarded as less important or even
ignorable because of their possible influences on the ethical decision making process. It is not the
purpose of this section to go into the detail of the organisational characteristics but rather look at
three personal factors namely age, gender and experience.
Age and gender are additional factors to consider in determining the ability to reason ethically. Older
healthcare workers are considered to be more mature and it is said that the age factor does affect
the healthcare worker’s wisdom and ability within the ethical decision making process. Apart from
age, gender difference is a further factor that could influence the ethical decision making process
because of the possibility that people of different genders may have different approaches to the
same ethical dilemma. It is stated that the initial attitudes of men and women tend to differ when it
comes to questionable behaviour, with females having a more negative attitude than men towards
such behaviour. Furthermore, social interaction may shift women’s judgements of questionable
behaviour while men tend to rely on prevailing social norms.
A third personal factor and linked to age, is experience. It is accepted that ethical decision making
progression evolves with the healthcare worker’s level of experience. The older the healthcare
worker is, the more experienced he or she ought to be. It must be noted that as healthcare workers
gain more experience, their ethical decision making becomes more intense and purposeful – or so
it is believed. A question that could be asked is, if the healthcare worker is getting older and gaining
more experience, does this mean that the healthcare worker can reach a state of ethical maturity?
Before the question can be answered, however, ethical maturity must be defined. Ethical maturity
is “the increasing capacity to embrace ethical complexity and deal with appropriate respect to all
parties involved in a situation” (Vivian-Byrne & Hunt, 2014). As the healthcare worker is gaining
more experience, there could be a heightened recognition of contextual complexity. Therefore, the
healthcare worker develops the potential to have a more ethically aware practice. There could be
a relationship between experience and ethical maturity but being mature in the ethical decision
making process is not equal to the increase in age or being experienced, as the maturity can vary
due to other factors as mentioned earlier this section. Professional behaviour of healthcare workers
is often linked with experience but this is considered to be a matter of etiquette rather than ethics.
The distinction between a moral code of behaviour and good manners is not always clear.
In this section a few personal factors that could influence the decision making process have been
discussed. In summary it can be concluded that an ethical dilemma cannot be solved effectively
simply by using a model or following a formula. The ethical dilemma should be put into context,
and should be approached taking into consideration of a variety of factors as well as particular
circumstances. It is important to acknowledge and evaluate the mentioned contextual factors that
directly or indirectly influence the quality of ethical decision making.
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9. SUMMARY – ETHICS IN HEALTHCARE
Healthcare is not practised in a vacuum and there are a number of regularly emerging themes that
challenge the healthcare worker. One of the main objectives in healthcare is patient care and one
such theme challenging the healthcare worker is the vulnerability of patients and their family while
the healthcare workers do in fact have the perception of power of authority in this relationship. This
theme becomes even more complicated when healthcare workers are required to maintain a trusting
relationship with the patients while respecting their patients’ subjectivity and not objectifying or
reducing it. Ethical decision making competency becomes more and more challenging in clinical
practice for a variety of reasons, including the increasing diversity of individual value systems,
rapidly changing healthcare environments, and the complexity of healthcare systems.
Healthcare workers need to work in partnerships and teams to elevate the perceptions by the
community at large with respect to ethics related to science, technology and healthcare. Such
perceptions will only be achieved if all the efforts are consolidated and principles of ethical decision
making and the system operate in a synchronised as well as in a structured manner. Despite the
recommendation that healthcare workers need to work in partnership, the final ethical decision is
essentially an individual process set within a modernist perspective, resting largely on the internal
world of the healthcare worker who finds himself at the centre of the decision making process.
The exposition in this chapter is discursive due to the complexity of the ethical decision-making
process. It is not always possible to have a quick solution for the decision-making process because
various factors - as discussed in this chapter and book - must be considered. However, ultimately
the healthcare worker will take responsibility for the entire ethical decision making process no
matter what approach is followed.
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CHAPTER 10
Spirituality and healthcare
Marius Swart
1. INTRODUCTION
Depending on the severity of the disease, a patient also has, apart from the physical discomfort,
psychological and social challenges to deal with. In the holistic approach to patient care, the
healthcare practitioner should be sensitive to the spiritual needs of the patient – and this sensitivity
should involve taking the religious and faith needs of the sick person into consideration.
To treat only the body is to deny the person as a whole. In the Judeo-Christian faith the heart is
the place where the body, soul and spirit connect as one (Nouwen, 2011:95). The Latin word
for heart is indeed cor, which is the etymological origin of the more familiar word core or centre.
However, these concepts of body, soul, spirit, and even mind, can be confusing. Waaijman
(2002:132) attempts to clarify this by stating that the soul is the place where the soul chooses to
be spirit (pneuma) or flesh (sarx). One should not see this trichotomy of body, soul and spirit in an
anatomical context, but should rather understand a human being as an embodiment of soul, or an
ensoulment of body (Louw, 2005:16). Soul does not represent a part, but rather soul represents
wholeness (Louw, 2012:2). Spirituality could thus be the religious dynamic of this ensoulment
or embodiment. Spirituality, in a broad sense, means to find significance and direction in life,
because spirituality is the point of interaction between the spirit of the human and the spirit of God
(Schneiders, 2005:51). In particular spirituality refers to the meaning or even lack of meaning
the patient may experience during illness (Truter & Kotze, 2005:974). However, this does not
necessarily mean that spirituality is a pathway to “strange” religious experiences.
Spirituality is the way of life. The rabbinical word halacha refers to the way of the Torah. The
follower of Buddhism sees spirituality as the way to Enlightenment. Even the root of the word
Taoism (a Chinese philosophy) refers to “the way”. The Christian is familiar with Jesus’ claim
of being the way (New Testament John 14:6). For the believer of Islam shari’ah is the road to
travel (Waaijman, 2002:123-125). All of these religions have an eschatological emphasis that is
important to the patient who, in his or her vulnerable state, may be thinking about what will happen
after this life.
The term “spirituality” has its equivalents in many other languages: the French have spiritualité,
derived from the Latin spiritualis, the Hebrew use the term ruach and the Greek pneuma. The
term spirituality is also not bound to a specific religion; the Jewish kaballa, for example, means
mysticism and inner life (Waaijman, 2002:360).
Spirituality is also not necessarily even associated with a religion. People may well be spiritual, but
not religious. All people are spiritual to some degree, even though they may deny this (Hinshaw,
2005:271). To be human is to be spiritual (Pesut, Fowler, Taylor, Reimer-Kirkham & Sawatzky,
2008:2804). To accept the idea that all people are spiritual though not necessarily religious, one
has to acknowledge a secular spirituality, or reverence. Such a spirituality can be defined as, for
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example, the amazement one can experience when spending time in nature; the enjoyment provided
by a piece of art or music; the feeling of being loved; or the warm feeling engendered by altruistic
deeds (Ai, Wink & Shearer, 2011:535). To Waaijman (2002:427) a secular spirituality is inclusive.
Secular spirituality may include a sense of awe associated with, for example, environmental
matters, feminism and other non-theistic forms of spirituality. However, there should always be
something sacred to spirituality, even if it is not in a religious context.
2. SPIRITUALITY IN HEALTHCARE
When it comes to healthcare matters, and in particular the investigation of spirituality as it relates to
healthcare, it is important to distinguish between the concepts of religion and spirituality. Patients
often do not realise this difference and even authors use these terms interchangeably, although
they could mean or refer to the same human experience (Koenig, 2008:5).
Religion concerns the service and worship of (a) God. Religion is considered to be institutionalised
and related to tradition. The members of a religious group are often accountable to some kind of
authority. Certain aspects of religion can be measured and this is important in studies related to
health. These aspects may be, for example, the regularity of attendance of religious meetings or the
frequency of prayer, or of reading the Holy Scriptures. As a concrete example, the close association
between religion and tradition or customs was strongly highlighted by the positive interreligious
collaboration in West Africa during the Ebola crisis of 2014 (Marshall & Smit, 2015:5).
Spirituality is more personal, more inclusive and less formal than religion. Koenig (2007:S45)
acknowledges that spirituality could also refer to psychological characteristics of people. This may
well complicate the possibility of research which tries to find links between spirituality and (mental)
health. When spirituality is investigated, the sacred or transcendent should be seen as part of
spirituality (Koenig, 2007:S46; Lucchese & Koenig, 2013:105). The transcendent is that which lies
outside the physical and perceptible reality. In that sense spirituality is very close to religion and
to measure religion is to measure spirituality. In a practical sense spirituality in healthcare refers
to everything about the patient that is not body (anatomy or physiology), but which belongs rather
to the vulnerable inner space (Waaijman, 2002:436), and which is concerned about why me, why
this, what if, what then. These are the typical existential questions people ask when confronted
with disease.
For centuries, perhaps millennia, medicine and religion have gone hand in hand. The same person
often performed religious and medical rituals. During and after the Enlightenment an epistemology
of reason, objectivity and empirical data forced religion into the private lives of individuals (Pesut,
Fowler, Taylor, Reimer-Kirkham & Sawatzky, 2008:2805). Science and religion separated and
developed in different directions. However, today this is changing again, and a new era has
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dawned, or perhaps returned. The science-faith debate is very topical. The fields of science and
theology do not need to be in conflict with one another. Theology should take note of the findings of
the hard sciences, re-interpret them and apply them in a religious tradition (Buitendag, 2004:65).
Since the 2000s an explosion of research articles on spirituality and medicine has been observed
(Lucchese & Koenig, 2013:105; Neely & Minford 2008:176; Van Erp, 2006:66). Where Science
and Spirituality Meet becomes an appropriate subtitle for the book on health and religion by Harold
Koenig (2008). The argument by Willis (2000:355) that healthcare should make some serious
paradigm shifts, is thus relevant. These paradigm shifts can be summarised as a change in the
way healthcare workers see patients; the way patients see themselves; and how God is perceived
in suffering and healing.
3. WHAT IS THE EVIDENCE?
Religious people would rejoice if evidence could be produced to prove that spirituality, and in
particular faith, contributes to curing. Of course, true believers don’t need proof, and sceptics
won’t be persuaded by facts (Tarpley & Tarpley, 2002:644). There is, in fact, no lack of evidence
for a positive link between spirituality on the one hand, and health and curing on the other.
When the evidence is evaluated one should be attentive to the outcome of the investigation and
the way that spiritualty has been applied. One should also be aware of underlying factors that
may assist in explaining the association. Obviously, in such a debate one should be open to
alternative standpoints.
Unfortunately, faith-linked controversies in healthcare are often closely related to culture, social
factors and politics (Tomkins, Duff, Fitzgibbon, Karam, Mills, Munnings, Smith, Seshadri, Steinberg,
Vitillo & Yugi, 2015:19). Family planning, child marriage, female genital mutilation, sexuality and
end-of-life issues (suicide, euthanasia), to mention but a few, could all be faith/tradition related
and have a decisive effect on health and well-being. Surgeons are familiar with the stance of the
Jehovah’s Witness religion pertaining the transfusion of homologous blood.
The positive relation between health and religion in general has been established. A meta-
analysis of 42 articles and 126 000 patients who were followed up for a fixed period reveals a
lower mortality rate among patients with active religious involvement – the odds ratio was 1:29
(McCullough, Hoyt, Larson, Koenig & Thoresen, 2000:211). People with religious affiliations were
shown to have a better chance of being alive at follow-up. This finding was however criticised as
a weak association, and it was pointed out that other psychosocial factors are or could be more
important to health (Sloan & Bagiella, 2001:228). Sloan and Bagiella’s (2002:19) own review of
the literature a year later concluded that religion has no beneficial effects on health. However, the
claim that religious attendance could have the same benefit in terms of additional life-years as
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using a statin or exercising regularly, is almost provocative (Hall, 2006:106) – yet no one will doubt
the importance of a statin and exercise in managing coronary artery disease. In a review article,
physicians at the Mayo Clinic expressed the opinion that spirituality and religious activities have a
direct positive relationship with health outcomes (Mueller, Plevak & Rummans, 2001:1232).
In the positivistic sciences it would make perfect sense to test faith by comparing a study group
and a control group. This was done by Byrd (1988:826) in the late eighties and repeated ten years
later by Harris, Gowda, Kolb, Strychacz, Vacek, Jones, Forker, O’Keefe, & McCallister (1999:2273),
who tracked intercessory prayer, and concluded that intercession improves the outcome in the
coronary care unit. In both of these studies, hard endpoints were used, such as antibiotic usage,
ventilator dependence or coronary care scores. The consensus after a review of five randomised
control studies was that intercessory prayer is useful. However, soon after this finding, the
contrary was demonstrated by the Mayo Clinic, which presented findings of a methodologically
very sound study (Aviles, Whelan, Hernke, Williams, Kenny, O’Fallon & Kopecky, 2001:1192). It
was a randomised, double blind study to assess the effect of intercessory prayer on patients for 26
weeks after they had been discharged from the coronary care unit. The endpoints were also robust
outcomes, but they found no difference between the two groups. In another study, intercessory
prayer was applied to a surgical group (Benson, Dusek, Sherwood, Lam, Bethea, Carpenter,
Levitsky, Hill, Clem, Jain, Drumel, Kopecky, Mueller, Marek, Rollins & Hibberd, 2006:934). Post-
operative coronary artery bypass graft surgery patients were randomised into three groups. One
group received prayers, though they were not aware of it. A second group received no prayers, but
they did not realise it. The third group received prayers and they were conscious of it. Again, no
difference was found between the first two groups, but surprisingly, the third group, which received
prayers and were aware of it, had more postoperative complications. The measured outcome was
the complications typically associated with major cardiac surgery. One possible explanation is
that these patients experienced a religious struggle. The negative influence of religion has been
investigated and confirmed (Ai, Pargament, Appel & Kronfel, 2010:1067; Ano & Vasconcelles,
2005:477). To add to this, links between the image of God, frequency of prayer and mental health
have been established (Bradshaw, Ellison & Flannelly, 2008:654). Patients with a negative image of
God (i.e. not-loving or remote) might experience more symptoms of psychopathology. This might
even be in spite of a higher frequency of prayer, illustrating underlying stress. A good image of God
shows an inverse association with mental health problems. To conclude on the possible correlation
between intercessory prayer and curing, the authoritative Cochrane Library pronounced the futility
of such “experiments” and concludes that such a positive correlation between intercessory prayer
and no prayer as a way of curing patients does not exist (Roberts, Ahmed, Hall, Davison, 2009:2).
Prayer should be experienced as an end unto itself, and one should be careful of applying prayer as a
means to reach some other endpoint, such as biomedical or physical curing (Pembroke, 2007:347).
119
A point of criticism against studies involving study groups and control groups that are defined by
prayer or no prayer is the lack of a true control group, as patients themselves or their relatives
may also pray. The dosage or duration of prayers cannot be defined. Someone who prays expects
to experience change, especially after a petitionary prayer. This entails a change in the person
who prays or in the outcome and thus a change in God and God’s actions. Thomson (1996:534)
asks whether it is possible that such experiments actually question the existence of God. When
the patient relies on prayer for curing instead of believing in God, the emphasis is on prayer as a
prescription, written on the treatment chart of the patient.
Ai, with several of her co-workers, investigated personal prayer extensively, together with its effect
on alternative yet softer outcomes. After many years they confirmed the positive role of personal
prayer in the post-operative recovery after, in particular, coronary artery bypass graft surgery (Ai,
Ladd, Peterson, Cook, Shearer & Koenig, 2010:806). These investigators are of the opinion that
patients’ spiritual needs should be addressed by healthcare workers. They investigated, inter alia,
the relationship between optimism and prayer and found that prayer predicted optimism, along with
older age, better education and a healthier affect (Ai, Peterson, Boling & Koenig, 2002:77). Although
the association is positive and in fact now generally accepted, the reason for the association is
still unclear. Phrases such as, for example, a link, a relation or an association are often used to
express the connection between spirituality and health. This does not necessarily imply a causal
correlation. For the believer, however, such a connection is real and that should be respected. After
all, how does one prove godly intervention, if that is what believers would like to believe? God
does not need to be proven. God is supernatural. God is transcendent and experienced immanent.
The only confirmation of God’s existence is the fact that God is approached in confession, in
glorification, in expressing gratitude or in petition.
Koenig (2008:2) lists six fields of medicine where this positive association is established, namely,
mental health, the immune and endocrine systems, cardiovascular diseases, stress, death and
physical disability. It is accepted that a spiritual or religious life is usually associated with healthier
lifestyles, with positive support networks, with less sympathetic reactions and with strengthened
immune systems (Koenig, 2001:1190; Mueller et al., 2001:1229). Religious attendance could,
for example, simply be a marker for active lifestyle, or a thriving social network (Bagiella, Hong &
Sloan, 2005:451). It could perhaps even have been argued that religion is rather a demographic
variable (Hall, 2006:107). This probably explains why Ai and her co-workers (2011:538) were able
to find a positive correlation between secular reverence and healing after cardiac surgery. Does
this mean there is no difference between a religious spirituality and a secular spirituality? Are they,
in fact, the same experience? Certainly not. Both spiritualities could be acting through the same
bio-physiological pathways (Ai et al., 2011:539). The positive result of both might be the same, but
faith implies a relationship that is important to the believer and, in particular, the believing patient.
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4. INSTRUMENTS TO MEASURE SPIRITUALITY
When the literature on spirituality in health and medicine experienced a revival, a number of tools
were developed to measure religious practice. The scientist can now measure spirituality and
quantify it, and these instruments can be applied to many religions. Organised religion (OR) is
often determined by the frequency of the attendance of faith assemblies. Religious encounters
comprise a multitude of spiritual experiences that may be beneficial for physical health (Idler,
Boulifard, Labouvie, Chen, Krause & Contrada 2009:1). Non-organised religion (NOR) is expressed
as the frequency of the believer’s prayers, private meditations or readings from a holy book.
Intrinsic religiosity (IR) refers to an individual’s beliefs and how the believer perceives the world
and decisions that need to be made (Cheever, Jubilan, Dailey, Ehrhardt, Blumenstein, Morin &
Lewis, 2005:71). A spiritual well-being scale can be used to assess an individual’s connection to
God (Saguil, Fitzpatrick & Clark, 2011:281).
Reverence is assessed by questions about the specific religious conditions (private prayer or
meditation) or secular reverence (being in nature, enjoying music or art, being loved or serving
others) that make a person feel reverent (Ai et al. 2011:535). A complete set of religious items is
available, and they can be adjusted according to a researcher’s needs (Idler, Boulifard, Labouvie,
Chen, Krause & Contrada, 2009:5).
5. THE PHYSICIAN-PATIENT RELATIONSHIP AS IT RELATES TO

SPIRITUALITY
It would appear that a significant number of patients expect their physician to have an interest in
their spirituality, particularly in the case of more critical medical conditions (MacLean, Susi, Phifer,
Schultz, Bynum, Franco, Klioze, Monroe, Garrett & Cykert, 2003:40). Yet patients do not use the
allocated consultation time to address spiritual matters, but prefer to concentrate on the primary
medical problem. Patients interviewed at a surgical specialist clinic had higher expectations that
the treating surgeon would have an interest in their spirituality than patients at a general outpatient
department had (Taylor, Mulekar, Luterman, Meyer, Richards & Rodning, 2011:41). Though the
group of orthopaedic and surgical patients at a specialist clinic had a comparable degree of
religiosity, the surgical group had a deeper need of spiritual enquiry. Some patients appreciate
it if the surgeon is open about his/her own spirituality (Taylor et al., 2011:40). However, this
expression of spirituality by the surgeon may have ethical implications if the treating physician is
too explicit. Certain medical situations are more relevant to the patient’s need for spiritual care:
these conditions are serious and life-threatening medical illnesses, or if loved ones have been
lost (McCord, Gilchrist, Grossman, King, McCormick, Oprandi, Schrop, Selius, Smucker, Weldy,
Amorn, Carter, Deak, Hefzy & Srivastava, 2004:358, 359). Spiritual care during less serious
121
situations is not that important. Patients should know that believers are not exempt from disease
and that spirituality as a mode of treatment cannot be applied like antibiotics or surgery. The reality
is that patients have a certain expectation regarding spirituality during medical treatment. This is
particularly important where end-of-life decisions are involved.
If the physician is to address the spiritual needs of the patient, the physician should be in touch
with his/her own spirituality (Fosarelli, 2008:838; Hinshaw, 2005:264). Doctors are not exempted
from existential questions. Physicians could, in the case of a negative medical result, reflect
on themselves, or focus on the comorbidities of the patient and the patient’s contribution. The
believing physician would like to seek God’s involvement in whatever outcome. The extent to
which individuals ascribe the outcome of an event to personal doing, for example, a decision,
an intervention or ability, is determined by a locus of control (LOC). Physicians with high internal
LOC will look at themselves to find reasons for complications. A high external LOC will lead the
physician to find the reason for the negative outcome elsewhere. This nature of LOC does not
necessarily correlate with religiosity (Cheever et al., 2005:67). In other words, doctors may be
religious, but in the hospital they want to be in control. One would expect surgeons to have a
higher internal LOC. At surgical mortality and morbidity meetings surgeons often feel the need to
explain the reason for a complication (Barnard, 2011:135). However, Cheever et al. (2005:73),
whose study group consisted only of surgeons, found that surgeons have a surprisingly moderate
internal LOC. They did find that younger surgeons battle with a higher internal LOC. It should be
noted that, in this study, the question related to LOC was answered by only 16% of the surgeons
in the study group.
The more religious a physician is, the better the chance that he/she will have a positive attitude
towards the patient in terms of respect for autonomy, altruism, empathy and a holistic approach to
care (Pawlikowski, Sak & Marczewski, 2012:506). This study was done to investigate the doctor’s
ethical approach to patient care. These authors also found that, as far as religiosity is concerned,
there is no difference between male and female physicians, yet there is a small but statistically
significant difference between surgeons and specialist physicians. The authors (Pawlikowski,
Sak & Marczewski, 2012:505) conclude that the work in surgical disciplines requires more
factual thinking, with a direct effect on the patient. The therapeutic influence of pharmacological
intervention on patients by non-surgeons is more indirect. In general, religion can also have a
positive effect on the well-being of the medical doctor (Ayele, Mulligan, Gheorghiu & Reyes-Ortiz
1999:453; Pawlikowski, Sak & Marczewski, 2012:505).
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6. HOW TO ADDRESS SPIRITUALITY IN PRACTICE
Surgeons, in particular, are not only poorly prepared to deal with their patients’ spiritual needs, they
are often unaware of these needs (Woll, Hinshaw & Pawlik, 2008:3048). Oncology surgeons at
Johns Hopkins are advised to consider patients’ faith as rational and to respect it with the necessary
sensitivity (Woll et al., 2008:3056) – this advice is in accordance with the American College of
Surgeons’ Code of Professional Conduct. The College states that at the core of professionalism is
the altruistic commitment to, inter alia, the spiritual needs of the patient (Gruen, Arya, Cosgrove,
Cruess, Cruess, Eastman, Fabri, Friedman, Kirksey, Kodner, Lewis, Liscum, Organ, Rosenfeld,
Russel, Sachdeva, Zook & Harken, 2003:606).
A basic spiritual enquiry permits the physician to establish the spiritual needs of the patient. The
acronym FICA has been proposed for obtaining a spiritual history from the patient (Puchalski &
Romer, 2000:131). A patient can be asked about his/her faith or spirituality. How important or
what the influence of this faith is? Is the patient part of a faith community and does it contribute
to support the patient? How should these issues be addressed? These questions respect privacy,
but present an opportunity to involve professional spiritual caretakers. CSI-MEMO is another
approach, and it refers to the possible comfort or stress and influence of beliefs. It enquires
about membership of a faith community and whether the patient can be assisted in any other way
(Taylor, Mulekar, Luterman, Meyer, Richards & Rodning, 2011:37). Such inquiries allow the doctor-
patient relationship to be a source of kindness and optimism, especially in desperate situations.
Needless to say, training in spirituality for physicians should be as important as lectures in ethics
and communication skills. Spirituality is indeed being taught more and more at medical schools in
the USA and the UK (Neely & Minford, 2008:177), at both undergraduate and postgraduate levels
(Saguil, Fitzpatrick & Clark, 2011:283).
7. A NEW PERSPECTIVE ON SPIRITUALITY IN HEALTH
In the past, medical doctors were taught to keep a distance between themselves and the patient.
The familiar clerking of the patient, completing the clinical notes, and even the term registrar,
all have the tone of an administrative connection which could create an emotional distance
between patient and physician. It is therefore not surprising to find different interpretations of this
relationship, which could, to a certain extent, also be considered a sacred relationship. It is also
important to distinguish between disease and illness. Disease refers to the body, namely anatomy
and physiology, whereas illness puts the accent on how the human being experiences this insult
to the body (Frank, 1991:12). For instance, the doctor might see sickness as a purely biological
phenomenon, while the patient might have serious existential questions. Hospitals should move
away from a customer-driven attitude and rather see the patient as a guest (Willis, 2000:355).
123
Narrative medicine allows the healthcare worker to gain practical wisdom (Charon, 2006:vii) (see
Chapter 2, paragraph 4). Within a specific surgical context and from a tradition of faith, interwoven
narratives present the possibility of an interdisciplinary conversation between medical science and
theology. Such practical wisdom was obtained from a narrative reflection on negative outcomes
after coronary artery bypass graft surgery (Swart, 2015:376). Surgical outcomes the world over
are similar. Mortality after surgery is related to co-morbidities as well as established risk factors.
With a new hermeneutical approach to a personal surgical database it has become clear that
patients have physiological limitations (Swart, Van Zyl & Van den Berg, 2015:128). Everybody has
an innate power or energy to heal. In medieval times this was referred to as vis medicatrix naturae.
The believer believes this “power” is from God and, as such, this is a dispensation of creation.
The lifestyles of patients and the effects of other peoples’ lifestyles on the patient contribute to
disease. Lifestyle involves free choice and this too is part of creation (Hicks, 2012:6). God acts
without violating natural laws or the free will of human beings (Brümmer, 2011:83). Yet the patient,
especially the critically ill patient and his/her relatives, would like to see an intervention by God.
Miracles are uncommon (Collins, 2007:44; Lewis, 1985:171). God does not necessarily intervene
in an ad hoc way and thereby disrupt natural laws and free human choice. If this was the case,
science would be impossible, and so would social structures.
The believing patient should see and experience the “hand” of God with a fresh outlook. The average
patient expects physical or biomedical curing each and every time after petition by prayer. However,
with a new perspective, each curing from disease, whether spontaneous or by medication, and
every recovery after surgery can be experienced as a miracle. One should be amazed by even the
simplest curing of the body. The limitation is the physiological capability of the human body. God
has allowed human beings to develop medical science and move the physiological frontiers. An
answer in response to prayer could even involve the strength to manage the disease; a reduction
of anxiety before the operation; personal growth after a serious illness; the ability to change a
detrimental lifestyle or the experience of peace amidst terminal disease. The support of a social
network or faith community should be perceived as God in action. The patient may not necessarily
experience a miracle, but may instead feel the love and support of caring others. Illness should
also be an eschatological reminder of perfect health. These positive outcomes are all more than
merely plain biomedical curing, but are the healing of the total person.
8. ETHICS
The application of spirituality to healthcare is bound by the same ethical rules that govern medical
care in general. The set of rules that protect the patient is referred to as principlism. These
principles are respect for autonomy, non-maleficence, beneficence and justice (Van Niekerk,
2011:37). Although the association between spirituality and positive health outcomes has been
124
established, spiritualty does not replace good medical care and treatment based on sound medical
science. The physician has no right to proselytise the patient under care. The physician’s inquiry
into the spiritual needs of the patient should be important as far as it might influence diagnosis,
treatment and well-being. The patient deserves respect for privacy regarding his/her religion, but
not if, for example, spiritual struggle as a result of faith disappointments, or withholding treatment,
stands to jeopardise the patient’s recovery. The primary-health caretaker should be open to the
spiritual needs of the patient and should know where and when to consult appropriately. It is also
important to realise that spirituality is a personal matter, and that health workers do not necessarily
have the know-how to deal with spirituality during health care. Few physicians are trained to guide
patients spiritually – this guidance should be provided by people equipped to deal with the spiritual
or religious needs of the patient.
9. FUTURE OF SPIRITUALITY IN HEALTHCARE
From a research point of view there are a number of limitations to the investigation of the role of
spirituality in health. Mouch and Sonnega (2012:1051) point out a few:
■■ There is a need to measure spirituality more accurately.
■■ Though the concepts of spirituality and religion are defined separately, they are often applied
randomly in studies.
■■ Studies in spirituality are likely to be qualitative studies, and that limits the study size. It is
more convenient to interview fewer people.
■■ The association between spirituality, religion and health is strong, but causation is still not
clear. Certain pathways have been suggested and were referred to in a previous paragraph.
It has been suggested that in the future the accent should be on finding an explanation for
this association (McCullough, Hoyt & Larson, 2001:229; Hummer, 2005:453). One should
never forget that the field of faith and spirituality is, to a large extent, a mystery and research
to unveil this might involve pitfalls and gaps.
The vast majority of related research has been conducted in the USA. The field of spirituality is
still fallow land in other parts of the world. Other continents, countries and regions have their
own versions of spirituality and the association with health should be confirmed under those
circumstances. Faith leaders and health professionals all need to work together, perhaps by
reinterpreting sacred texts and showing better understanding by moving out of their respective
isolated disciplines, and starting to work together (Tomkins, et al., 2015:24).
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10. CONCLUSION
Spirituality is a way of life and underlines the completeness of the patient.
Spirituality and the medical sciences, more and more, are sharing the same domain, and should
no longer be separated.
The positive association between spirituality and health is well established, though the causality is
still unclear. In certain communities, however, religion and related customs can also be detrimental.
Patients cherish certain expectations of spirituality and physicians have varying levels of spirituality.
Easy ways exist to address the patient’s need for spiritual care by asking a few simple questions.
The shift from a power relationship to a complementary relationship is enhanced by this holistic
interest in the patient’s well-being.
The sicker the patient, the more vulnerable the patient becomes. The healthcare worker should
respect the patient’s sources of strength and allow him/her to draw from those.
The application of spirituality in healthcare is also bound by ethical rules.
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130
HEALTHCARE
ETHICS CODE
This book’s major theme is healthcare ethics and how healthcare practitioners, patients, healthcare
managers, administrators and the community in general can benefit from healthcare ethics. On
the basis of the summative guidelines offered in Chapter 1 and the detailed explanations of these
guidelines in Chapters 2-10, the following Healthcare Ethics Code for healthcare practitioners,
patients, healthcare and managers and habitat are offered:
■■ Healthcare ethics reflects on respect, dignity, care and compassion for all involved in
healthcare.
■■ Healthcare practitioners should at all times value life and treat patients with dignity, respect
and care.
■■ Patients should acknowledge the ethical needs of healthcare practitioners and should behave
towards them too with dignity and respect.
■■ The ethical responsibility of all stakeholders should be upheld at all times.
■■ Healthcare managers and administrators should ensure quality health service at all times.
■■ Communities should assist the healthcare profession to extend its knowledge on basic
healthcare and should be supportive of quality service delivery.
■■ Healthcare is about a mutual relationship between the patient, the healthcare practitioners and
the community.
■■ No healthcare can be value-free nor can it ignore the influence of religion, faith, spirituality and
culture on decisions.
■■ Morality is expressed through value judgments, selecting between options.
■■ Ethical decision making implies understanding the situation and reacting appropriately.
■■ Healthcare practitioners should be mindful of the patient’s culture, values and preferences
when making medical decisions.
■■ Ethical decision making is a complex phenomenon which should be considered within the
context of the situation.
■■ There are no standardised approaches or answers to address ethical issues in healthcare but
checklists can be used to assist healthcare workers to make appropriate decisions.
■■ Healthcare should be promoted via training, mentorship and coaching.
■■ Ethical behaviour is the foundation for professionalism.
■■ Ethical behaviour is inherently part of all healthcare practitioners.
132
■■ Ethics is particularly applicable to the professional practice of medicine to guide decision

making in the doctor-patient relationship, and to protect self-directedness for the patient in an
essentially unequal power relationship.
■■ When faced with a healthcare dilemma, the relevant organisation’s medical ethics committee
should be consulted. In the event that an ethics committee is not available, other resources
as appropriate should be used.
■■ Healthcare practitioners shall respect the law and also recognise a responsibility to seek
changes in those requirements which are contrary to the best interest of the patient.
■■ In community-based participatory research the whole community should be considered the

subject of research and ethical considerations should encompass respect for community as
well as individual autonomy.
■■ Note should be taken of the age and context of participants and these should be taken into
consideration throughout the research project.
■■ Ethics is a process which should be continually reconsidered, with reflexivity by researchers

encouraged.
■■ Healthcare workers should be sensitive to the spiritual needs of the patient, especially the
seriously ill patient.
133
CONTRIBUTING
AUTHORS
Prof. Roger Burggraeve is emeritus professor at the Catholic University Leuven, Belgium. He
specialises as Moral Theologian, Levinas Scholar, Bible philosopher. He obtained his Licentiate
in Philosophy (Rome, 1966) and Doctorate in Moral Theology (Catholic University in Leuven,
1980). He was professor of Moral Theology at the Faculty of Theology and Religious Studies,
Katholieke Universiteit Leuven, from 1974 till 2010. Apart from being emeritus professor at the KU
Leuven but still active in research, he is also a visiting professor at the International Jesuite Institute
“Lumen Vitae” (Brussels/Namur). Since 1987 he has been the Co-founder and Chair, and is now
the Honorary Chair of the Centre for Peace Ethics (KU Leuven). He is member of several national
and local Ethical Committees of Social Welfare and Health Care. He is an internationally recognised
Levinas scholar, who published a comprehensive Levinas Bibliography, 20 books and 95 articles
on Levinas’ thoughts, in English, Dutch, Italian, French, and even Japanese.
Ms Pamela Campbell is a PhD student in the Institute for Healthcare, Policy and Practice in the
School of Health, Nursing and Midwifery, University of the West of Scotland. She is currently
in the process of completing her doctoral studies, which are focused on community-based
health programmes for child obesity and family health. Her research interests are in the areas of
community-led health, and opportunities for health promotion and healthy lifestyles in the local
community.
Dr. Amber R. Comer is Assistant Professor of Health Sciences in the Indiana University School
of Health and Rehabilitation Sciences, Indianapolis, IN, USA. She holds adjunct professor
appointments at the Indiana University School of Medicine and the Indiana University McKinney
School of Law. Dr. Comer is also a member of the Eskenazi Hospital medical ethics committee
and holds an appointment as an Affiliate Research Scientist at the Regenstrief Institute. Dr. Comer
has a PhD from the Indiana University Fairbanks School of Public Health and a JD from the Indiana
University McKinney School of Law. Additionally, she completed a medical ethics fellowship at
the Fairbanks Center for Medical Ethics. Her research interests include stroke care and treatment,
medical ethics, and end-of-life care.
Dr Beth Cross is a Lecturer at the University of the West of Scotland. With an MSc in African
Studies and PhD in Sociology of Education from the University of Edinburgh, she has been
researching the interface between formal and informal learning contexts for the last fifteen years
and is particularly interested in dialogic methods of exploring learner identities, strategies and
trajectories. Her interests include deliberative democracy, and service user voice and participation
in health, social services and education. She has taught in the areas of community education,
social policy and children’s services in England and Scotland and has worked with a number
of creative interdisciplinary projects that involve visual and dramatic arts in order to expand the
modalities for deliberation and participation.
136
Prof. Willem H. Kruger is the Head of the Department of Community Health, Faculty of Health
Science at the University of the Free State in Bloemfontein, South Africa. He is a medical practitioner
and a specialist in Public Health. He completed his doctoral studies (PhD (Community Health) with
a focus on occupational health at the University of the Free State. He served on the Research
Ethics Committee of the Faculty of Health Sciences, University of the Free State almost 12 years
(6 years as the chairperson). Currently he is also a representative member for the Faculty of
Health Sciences on the Senate Research Ethics Committee of the University of the Free State. His
research interest is in the area of qualitative research within healthcare with a focus on ethics and
management within healthcare systems.
Prof. Laetus O.K. Lategan is the Director Research Development and Postgraduate Studies at the
Central University of Technology, Free State in Bloemfontein, South Africa. He completed doctoral
studies with the University of the Free State in Philosophy and Theology. He has an extensive
background in senior and executive management. His research interest is in the areas of research
ethics, healthcare ethics, applied ethics and doctoral education. He is the (co-)author of more than
200 publications in various disciplines. He is the editor of the Journal for New Generation Sciences
(ISSN 1684-4998) and a South African National Research Foundation rated researcher.
Prof. Moira Lewitt is Professor in Interprofessional Learning and Practice and Chair of the
University Ethics Committee at the University of the West of Scotland. She completed her
professional training with the Royal Australasian College of Physicians, and is also a Fellow of
the Royal College of Physicians (London). She has a PhD from the University of Sydney and
docentship from Karolinska Institutet in Stockholm. Her research interests span the basic and
clinical sciences, and also include research into higher education. She has strong interdisciplinary
approaches, and an interest in developing learning environments that support interprofessional
healthcare practice.
Prof. Joyce MacKinnon is Associate Dean for Academic and Student Affairs for the School of
Health and Rehabilitation Sciences, Indiana University on the Indianapolis campus (IUPUI), USA.
She holds a visiting faculty appointment in Health and Environmental Sciences, Central University
of Technology, Bloemfontein, South Africa. She received her doctoral degree in Higher Education
Administration from North Carolina State University, and her master’s degree in physical therapy
from Baylor University. She is currently in the Graduate Certificate in Bioethics programme,
Department of Philosophy, School of Liberal Arts, IUPUI. Her areas of interest and expertise are
higher education administration and bioethics.
Dr Andrè J. Moore is an MBCHB graduate from the University of the Free State. He is a medical
practitioner in private practice since 1 December 1990. He also obtained the LLB degree from the
University of the Free State in 2009 and has a keen interest in medico-legal issues.
137
Dr Marius J. Swart is a cardiothoracic surgeon in private practice at the Mediclinic Hospital in

Bloemfontein, South Africa. He was trained at the University of the Free State in Bloemfontein
and at the University of Cape Town, South Africa. Only later during his professional career was
an interdisciplinary PhD conferred upon him. In this auto-ethnographic thesis he looked into the
spiritual experience of a surgeon when confronted with complications associated with coronary
artery bypass graft surgery. He has published a number of articles in peer reviewed journals.
Dr Linus Vanlaere works as an ethicist for sTimul: care-ethics lab, the Catholic School Association
RHIZO and GVO (a group of Nursing homes). He has obtained a doctoral degree in theology
with his research on care ethics. He has published several books (in Dutch) about ethical topics
in elderly care with his promotor, Prof. Dr Chris Gastmans. With Prof. Dr Roger Burggraeve, he
published ‘Gekkenwerk: kleine ondeugden voor zorgdragers’. His main research topics are elderly
care and the care-ethical education of healthcare workers.
Prof. Gert J. van Zyl is a Full Professor and the Dean for the Faculty of Health Sciences, University
of the Free State in Bloemfontein, South Africa for more than six years. He completed a medicine
degree, postgraduate diplomas in health management and community health, two masters degrees
– one in Business Administration (MBA) and one in Family Medicine and a doctoral study with
the University of the Free State in Health Professions Education. He has an extensive experience
and background in senior and executive management for more than twenty years. His research
interest is in the areas of health professions education, family medicine, community health and
medical ethics. He is the (co-) author of numerous publications in various disciplines. He is the
associate editor of the African Journal of Health Professions Education and also an Inaugural
Fellow of Association of Medical Education Europe.
Dr Paulina Maria van Zyl is senior lecturer and clinical pharmacologist on the joint staff
establishment of the University of the Free State and the Free State Department of Health. She
qualified as a medical doctor at the University of Stellenbosch and subsequently obtained the
degrees MMedSc and PhD in Clinical Pharmacology from the University of the Free State.
Her primary research interest is the effects of xenobiotics on human behaviour and authored
several publications on alcohol dependence and drug abuse. She is actively involved in setting
up and maintaining treatment services for alcohol and drugs abuse and recently completed a
commissioned guide for SANCA (South African National Council for Alcohol and Drug Abuse).
Ms Charné Viljoen is an LLB graduate from the University of the Free State. She is also a qualified
Basic Ambulance Assistant and currently completing her LLM at the University of the Free State.
Her research interests mainly focus on medical law and ethics. She is a part-time lecturer at the
Central University of Technology, Free State.
138
ADDRESS LIST
Prof. Roger Burggraeve

Emeritus Professor
KU Leuven
Leuven, Belgium
E-mail: [email protected]
Ms Pamela Campbell
PhD Research Student
Institute for Healthcare Policy and Practice
School of Health, Nursing and Midwifery
University of the West of Scotland, Paisley campus
Dr Amber R. Comer
Assistant Professor
School of Health Sciences
Indiana University
Indianapolis, IN 46202
Dr Beth Cross
Institute for Youth and Community Research
School of Education,
University of West of Scotland, Hamilton campus
Prof. Willem Kruger

Professor and /Head Clinical Dept(Gr2): Community Health Faculty of Health Sciences
University of the Free State
Bloemfontein, South Africa
140
Prof. Laetus O.K. Lategan

Director: Research Development and Postgraduate Studies
Central University of Technology, Free State
Website: www.cut.ac.za/research
Prof. Moira S. Lewitt

Institute for Healthcare Policy and Practice
School of Health, Nursing and Midwifery
University of the West of Scotland, Paisley campus
Prof. Joyce MacKinnon

Associate Dean, School of Health and Rehabilitation Sciences
Indiana University on the Indianapolis campus (IUPUI)
Indianapolis, Indiana, USA
Dr Andrè J. Moore
Medical practitioner
15 Whites Road
Waverley
Dr Marius J. Swart
Suite 111 Mediclinic Bloemfontein
Kellner Street
141
Dr Linus Vanlaere
sTimul: zorg-ethisch lab vzw en Katholieke Scholengroep RHIZO
Kortrijk, Belgium
Prof. Gert J. Van Zyl

Dean: Health Sciences
Faculty of Health Sciences
University of the Free State
Dr. Paulina M. Van Zyl
Department of Pharmacology
Faculty of Health Sciences
University if the Free State
Ms Charné Viljoen
Part-time lecturer: Faculty of Health and Environmental Sciences
Central University of Technology, Free State
142
H
ealthcare ethics cannot be limited in scope to apply only to the patient but needs to apply to
the healthcare practitioner as well. The relationship between the patient and the healthcare
practitioner has shifted from a power relationship to a complementary relationship. Leadership,
mentorship and coaching play important roles in facilitating this shift. Several themes informed this
book on healthcare ethics:
Vulnerability in healthcare ethics
Decisions between right and wrong
Quality of healthcare
Life-ending decisions
Community-based research
Ethical decision-making
Spritiuality in healthcare
Healthcare Ethics for Healthcare Practitioners was written by professionals from different spheres
and, as such, it is ideal for group discussions and for teaching ethics. Special emphasis is placed
on the vulnerability of patients, but also of healthcare workers, management and the community.
Ethical norms, such as compassion, respect for personhood/autonomy, care and commitment, are
fundamental in an ethical life attitude.
Kobus Smit (DPhil)
Emeritus Professor in Ethics
University of the Free State, South Africa
It is no secret that the South African health system is in a lamentable state. How do healthcare
professionals working in this context, deal with the ethical dilemmas that arise? Now more than
ever, it is essential that healthcare practitioners are competent in ethical decision-making. Healthcare
Ethics for Healthcare Practitioners is a valuable resource to which healthcare practitioners can turn
for ongoing information and guidance.
Maria Phalime (MD)
Author of Postmortem: The doctor who walked away
LAETUS O.K. LATEGAN (DIRECTOR FOR RESEARCH DEVELOPMENT AND POSTGRADUATE STUDIES, CENTRAL
UNIVERSITY OF TECHNOLOGY, FREE STATE) and GERT J. VAN ZYL (DEAN: HEALTH SCIENCES, UNIVERSITY OF
THE FREE STATE) have extensive research and management experience in healthcare ethics and have contributed to
various research papers on this topic. This book forms part of a joint collaboration between the two universities, their
international networks and the industry.
ISBN 978-1-920382-98-8
9 781920 382988

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HEALTHCARE

Published by Sun Media Bloemfontein (Pty) Ltd.

Imprint: SunBonani Scholar

All rights reserved

Copyright © 2017 Sun Media Bloemfontein and the Author(s)

First edition 2017

ISBN: 978-1-920382-98-8 (Print)

Cover design, typesetting and production by Sun Media Bloemfontein

This printed copy can be ordered directly from: [email protected]

Laetus O.K. Lategan & Gert J. van Zyl

Chapter 1: An introduction to healthcare ethics .................................................................... 5

Chapter 2: Unpacking vulnerability in healthcare ethics ....................................................... 11

Chapter 3: The difference between right and wrong............................................................. 27

Chapter 4: The quality of healthcare: A care ethics approach .............................................. 43

Chapter 6: ETHICS AND HUMAN RIGHTS IN HEALTHCARE ................................................... 65

Chapter 7: Euthanasia, do we dare? ..................................................................................... 73

Chapter 8: Community-based participatory research in healthcare: ethical issues

Chapter 9: Ethical decision making processes ...................................................................... 97

Chapter 10: Spirituality and healthcare ................................................................................ 113

Healthcare Ethics Code

Laetus O.K. Lategan and Gert J. van Zyl

1. BACKGROUND TO THE BOOK PROJECT

■■ Healthcare is unthinkable without modern technology. Thanks to technology, the so-called

■■ Slow living as a contra culture: Slow living is a post-materialistic culture advocating a

Healthcare ethics is trans-disciplinary of nature and transcends the common dictums of do no

2. OBJECTIVE OF THIS BOOK

3. OUTLINE OF THE BOOK

■■ Vulnerability in healthcare ethics

■■ Decisions between right and wrong

■■ Research involving the community

■■ Making ethical choices

Douma, J. 1999. Grondslagen christelijke ethiek. Kampen: Uitgeverij Kok.

Schotsmans, P. 2012. In goede handelen. Tielt: Lannoo.

Schuurman, E. 1995. Perspectives on technology and culture. Potchefstroom: IRS.

Smit, J.H. 1985. Etos en Etiek. Bloemfontein: Patmos.

Laetus O.K. Lategan and Gert J. van Zyl

2. ADDRESSING THE MAJOR THEMES IN HEALTHCARE ETHICS

3. AN OUTLINE OF HEALTHCARE ETHICS

■■ Part of extending our understanding of healthcare is to do research within communities. This

■■ Healthcare practitioners, managers and administrators should be trained, mentored and

Laetus O.K. Lategan

1. VULNERABILITY – A MULTI-PERSPECTIVE REALITY

The implication is that vulnerability is a multi-perspective occurrence. Hence, vulnerability should

2. VULNERABILITY IN HEALTHCARE ETHICS – A PERSONAL

Subsequently in my own studies and according to my understanding of these developments

It was Schotsmans (2012:17-22) who reminded me that healthcare is essentially based on

The emerging question remains: who is the vulnerable?

3. WHO IS THE VULNERABLE?

Life is not fictitious. Neither is illness or suffering.

She was also living on her own.

The debit card was also marching on towards the red …

6. THE ETHOS OF HEALTHCARE ETHICS

From these tasks, three important markers can be identified:

■■ Regardless of religious, spiritual or cultural orientation and/or conviction, the universally

■■ Vulnerability is a human experience and condition, whether ethical, physical, psychological,

■■ Vulnerability is a human experience – hence it depends largely on the ethical frameworks of

Creplet, J. 2013. De derde revolutie in de geneeskunde. Brussel: Pharma.be.

Holtzer, L. 2015. De 7 privleges van de zorg. Leuven: Acco.

Honore, C. 2004. Slow: Een wêreldwije revolutie. Rotterdam: Lemniscaat.