2018 Cheng-Pei Review
2018 Cheng-Pei Review
Review
Advance Care Planning for Older People with Cancer
and Its Implications in Asia: Highlighting the Mental
Capacity and Relational Autonomy
Cheng-Pei Lin 1 ID
, Shao-Yi Cheng 2 and Ping-Jen Chen 3,4,5, * ID
1 Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London SE5 9PJ,
UK; [email protected]
2 Department of Family Medicine, College of Medicine and Hospital, National Taiwan University, Taipei 100,
Taiwan; [email protected]
3 Department of Family Medicine, Kaohsiung Medical University Hospital, Kaohsiung Medical University,
Kaohsiung 807, Taiwan
4 Department of Division of Geriatrics and Gerontology, Kaohsiung Medical University Hospital,
Kaohsiung Medical University, Kaohsiung 807, Taiwan
5 Palliative Care Centre, Chi-Mei Medical Centre, Tainan 710, Taiwan
* Correspondence: [email protected]; Tel.: +886-7-312-1101 (ext. 7021)
Received: 25 May 2018; Accepted: 18 July 2018; Published: 20 July 2018
Abstract: With dramatically increasing proportions of older people, global ageing has remarkably
influenced healthcare services and policy making worldwide. Older people represent the majority of
patients with cancer, leading to the increasing demand of healthcare due to more comorbidities and
inherent frailty. The preference of older people with cancer are often ignored, and they are considered
incapable of making choices for themselves, particularly medical decisions. This might impede the
provision of their preferred care and lead to poor healthcare outcomes. Advance care planning (ACP)
is considered an effective intervention to assist older people to think ahead and make a choice in
accordance with their wishes when they possess capacity to do so. The implementation of ACP can
potentially lead to positive impact for patients and families. However, the assessment of mental
capacity among older adults with cancer might be a crucial concern when implementing ACP, as loss
of mental capacity occurs frequently during disease deterioration and functional decline. This article
aims to answer the following questions by exploring the existing evidence. How does ACP develop
for older people with cancer? How can we measure mental capacity and what kind of principles
for assessment we should apply? What are the facilitators and barriers when implementing an ACP
in this population? Furthermore, a discussion about cultural adaptation and relevant legislation in
Asia is elucidated for better understanding about its cultural appropriateness and the implications.
Finally, recommendations in relation to early intervention with routine monitoring and examination
of capacity assessment in clinical practice when delivering ACP, reconciling patient autonomy and
family values by applying the concept of relational autonomy, and a corresponding legislation and
public education should be in place in Asia. More research on ACP and capacity assessment in
different cultural contexts and policy frameworks is highlighted as crucial factors for successful
implementation of ACP.
Keywords: ageing; cancer; advance care planning; mental capacity; relational autonomy
1. Introduction
Ageing has become a key health policy issue worldwide due to the dramatic increase in the
population of older people [1]. According to the World Report on Ageing and Health published by
the World Health Organisation (WHO), the proportion of people aged 60 years or older in Europe,
North America, Asia and Australia already reached 20–25% in 2015, while in sub-Saharan Africa,
the population is still young. Japan is the only country where this proportion exceeded 30% in the
same year. By 2050, more regions (e.g., China, North America, Europe and Russian Federation) will
face a similar ageing situation to Japan in 2015 [1], and the number of older people is expected to be
1.5 billion, accounting for around 16% of the world’s population [2].
These older generations currently represent the majority of patients with cancer in the world,
because ageing is one of the fundamental factors for the development of cancer [3]. The incidence
of cancer has increased in older people due to their poor cellular repair mechanisms. According to
the WHO, malignant cancer is the second leading cause of death in the world, and it was responsible
for 8.8 million deaths in 2015. Globally, nearly one in six deaths are due to cancer [4]. This figure is
growing gradually each year, leading to the increasing burden of healthcare systems for older people
living with cancer from diagnosis to death.
The preferences of older patients with cancer are often ignored and they are considered lacking
mental capacity for decision making simply because of their age and disease condition. Such patients
might have no opportunity to speak for themselves in terms of desirable medical care at their end
of life (EOL). Therefore, advance care planning (ACP) is considered an effective way to facilitate
a person’s autonomy and enable provision of care and treatment aligned to an individual’s preferences.
Evidence has shown that ACP can positively influence the elderly [5], nursing home residents [6] and
people with dementia [7] and cancer [8]; whether a patient has been involved in ACP is considered
a key indicator of high-quality hospice and palliative care [9]. However, research on ACP in older
people with cancer is insufficient and lacking. This limitation is particularly important given the
dramatic increase in the global number of older people with cancer and needs of palliative care for this
population. This article aims to explore the following questions by applying the existing literature and
evidence:
1. Current development and research work on ACP among older people with cancer in the world
2. The benefit of ACP for older people with cancer
3. The challenges and implications when promoting ACP in Asia
4. The recommendations for further clinical practice, research and policy convictions
2. Development of ACP
meet patient’s preferences and minimise the uncertainty of healthcare decision making by families and
medical team, the Patient Self-Determination Act [17] was adopted in the 1990s in the USA. This act
mandates all patients be given information about their rights on decision making for future medical care
by completing ADs or AS. Similar developments have been reported in other Western countries such
as Australia, Canada, and United Kingdom (UK) as well as in Europe [16]. For example, in England,
the End of Life Care Strategy was published in 2008 [18] and one of its aims is to ensure that healthcare
services adequately meet EOL patients’ needs and preferences. Subsequently, relevant legislation or
regulation was adopted to underpin the implementation of ACP in several countries (e.g., Mental
Capacity Act 2005 [19] in England and Wales, Statute Law and Common Law in Australia [20],
Mental Capacity Act 2008 in Singapore [21], and Patient Autonomy Act in Taiwan [22]). Recently,
focus has moved from completing written documentations (e.g., ADs or AS) to an ongoing process
of ACP discussion with patients for death preparation and future goals. Only completing an AD,
which hypothesises specific clinical situations, will not necessarily improve a patient’s outcomes
(e.g., quality of life and emotional distress) as it fails to capture the unique individualised care
needs and recognise the availability of healthcare resources. An alternative approach, namely ACP,
was developed in the 1990s to address this clinical dilemma for improving healthcare outcomes [23].
ACP is now widely used in Western countries, and this surge has influenced ACP development
in other parts of the world. Examples of related activities include the promotion of ACP [24] and
the legislation of the Patient Autonomy Act in Taiwan [22], the development of the ACP program
“Let Me Talk” for nursing home residents in Hong Kong [25], a national survey of Japanese healthcare
facilities’ perspectives on ACP [26], a study on family caregivers’ attitude and perspectives on ACP in
Singapore [27] and EOL communication focusing on ACP with older adults in South Korea [28].
3.1. Facilitators and Barriers for ACP among Patients with Cancer or Older Adults
Some facilitators and barriers for initiating ACP discussion among patients with cancer or older
adults were found in the works by Johnson et al. [8], Ke et al. [40] and Niranjan et al. [41]. In general,
physician buy-in, patient readiness and prior experience of EOL care or decision making are considered
facilitators. By contrast, restricted time, insufficient resources, social or personal taboos and institutional
culture are deemed barriers for a successful ACP intervention. Most importantly, a family member’s
view about ACP and stakeholders’ knowledge of ACP have crucial roles in ACP implementation.
Notably, ACP does not always result in positive effects because fear and distress of participants
during the discussion regarding death and dying issues were found alongside with ACP
implementation [8]. Nevertheless, the concept and definition of ACP are inconsistent in previous
studies worldwide. Many studies treated ACP as AD documents rather than a mutual communication
process between patients and healthcare professionals and focused only on the completion rate of
a Do-Not-Resuscitate (DNR) forms or Physician Order for Life-Sustaining Treatment (POLST) forms
(both are part of ADs) for refusing certain medical treatments. A systematic review conducted by
Brinkman-Stoppelenburg et al. [30] reported that DNR order (39%) and ADs (34%) are the most often
studied aspects of care. These do not necessarily improve a patient’s quality of EOL.
3.2. Mental Capacity as a Special Concern in ACP for Older People with Cancer
A lack of mental capacity for decision making and uncertainty of engaging ACP were also
identified as barriers to undertake ACP for older people, particularly during their EOL [42]; these
barriers compromised the quality of EOL care for patients with impaired mental capacity compared
with those who only have cancer [43,44]. The process of informed consent needs to anticipate potential
loss of capacity during the course of treatment and how a participant’s willingness to participate in
certain care is upheld if they lose capacity. Therefore, assessment of mental capacity among people
who might lose capacity in the future (e.g., older people and adults with cancer) is an inevitable process
prior to the delivery of ACP intervention and should be embedded into clinical routine care to ensure
the effectiveness for enhanced outcomes.
Geriatrics 2018, 3, 43 5 of 12
On the other hand, concerning the aspect of research, this particular population is often excluded
from research given the difficulty researchers or clinicians have in judging whether they retain the
ability to understand the content of research so that they can join voluntarily [42]. Including this group
of people without consent prior to recruitment could be unethical as they are potentially vulnerable
individuals with cognitive and functional impairment. Moreover, these individuals are urged to be
included into studies on ACP as they are the potential stakeholders and representative subjects [42].
3.2.1. Meaning of Mental Capacity and Principles to Protect a Person’s Right on Decision Making
The Mental Capacity Act (MCA) 2005, covering England and Wales, provided the statutory
framework for people who have the capacity and want to make a decision in advance for themselves
once they lose capacity in the future, and the principles of decision making for people who lack mental
capacity. According to the MCA, a person who lacks mental capacity is defined as “a person who lacks
capacity to make a particular decision or take a particular action for themselves at the time the decision
or action needs to be taken” [19]. The decisions or actions can be day-to-day issues such as what to
wear or what to eat during daily life or major medical decisions such as life-sustaining treatments or
operations. This act is built on the following five principles to protect a person’s right on decision
making [19]:
1. A person must be assumed to have mental capacity unless he or she is proven to lack capacity.
2. A person should not be considered as unable to make a decision unless all possible methods have
been used without success.
3. A person should not be considered as unable to make a decision only because he or she made
an unwise decision.
4. A decision made on a person’s behalf, who lacks capacity, should be in his or her best interest.
5. This act should be applied in a less restrictive manner of a person’s rights and freedom of action.
3.2.2. ACP for People with Potentially Deteriorating or Fluctuating Mental Capacity
ACP is an opportunity to open early discussions about EOL care for older people or people with
severe illness such as malignancies or cognitive disease such as dementia, whose mental capacity for
decision making may degenerate gradually with the disease deterioration in the foreseeable future.
People should be helped by any means possibly to allow them to make their own decisions before they
are deemed as individuals who lack capacity. This principle has been strongly recommended in the
latest report on ACP for people with dementia in all care settings proposed by the National Health
Service (NHS) in England to guide the assessment of a person’s capacity on decision making [45].
The benefit of ACP for people with cognitive impairment and dementia has been confirmed by
previous systematic reviews [7]; however, timing to assess the cognitive impairment of older adults
and the criteria of excluding them from participating in an ACP still challenge healthcare professionals
and impede clinical practices [43]. Therefore, some practical principles regarding mental capacity
assessment and how to assist older adults with cancer make decisions for their future care are provided
in the following section.
means been used to help him or her make a decision? Every person with disabilities (e.g., cognitive
impairment) should be treated equally. A person’s lack of capacity should not be judged simply by
their age, appearance, assumption about their condition and behaviour. This is strongly supported by
MCA [19], NHS report on ACP for people with dementia [45] and Convention on the Right of Persons
with Disabilities (CRPD) [46]. According to the previously published literature, there are validated
assessment tools for testing an individual’s mental capacity, for example, MacArthur Competence
Assessment Tool-Treatment (MacCAT-T) [47], Hopkins Competence Assessment Tool (HCAT) [48],
Capacity Assessment Tool (CAT) [49], and Aid to Capacity Evaluation (ACE) [50]. The importance
of these standardised tools was stressed by Sessums et al. and Heywood, and could be used as
an evidence for capacity judgement in the court [51,52].
4. Challenges of Promoting and Implementing ACP in Asia: Taiwan and Singapore as Examples
4.1. Cultural Adaptation for the Concept of ACP and EOL Discussion
In Taiwan, although domestic studies regarding EOL care discussion and ACP with community
older adults [24], patients with cancer [53] and healthcare professionals [54] have been conducted to
investigate the congruence between patients’ EOL care preference and actual care received, the evidence
and understanding in terms of how to initiate an effective EOL care or ACP discussion remain sparse
and lacking. Most importantly, discussions with older adults about death, dying and related care
issues are discouraged as a result of cultural taboo and an emotional distress of destroying patient’s
hope [55,56]. Similar situations were also found in Singapore, as described by Ng et al. [27]. Thus,
access to palliative care for older adults may be restricted due to the lack of opportunity to open
a conversation in terms of EOL care among patients, families and healthcare professionals.
Evidence show that cultural backgrounds, religious beliefs, political convictions or past experience
can shape a person’s values, beliefs and understanding towards healthcare, and this concept can
affect the willingness of a person with full capacity in taking part in an ACP [19]. For example,
Cheong et al. conducted a study on ACP in people with early cognitive impairment in Singapore and
found that the majority of patients deferred decision making to their families; some considered ACP
as irrelevant to their disease and unnecessary, while others presented avoidance and denial during
ACP discussion [57]. Thus, ACP can be carried out in a very different manner under various cultural
backgrounds, and cultural acceptance should also be considered during mental capacity assessment.
The role of physicians in the ACP process is also vital in Asia. A qualitative study exploring
knowledge, attitudes and perceptions of ACP in family caregivers of patients with advanced illness
in Singapore reported that physicians, in general, are considered to possess requisite expertise to
recommend appropriate medical care and are strongly trusted to advocate the best interests for
patients [27]. The evidence stressed the cultural characteristics and importance of involving families
and physicians in the ACP process. Truth-telling in terms of disease prognosis and EOL issues are
also challenging for healthcare professionals in Asia. Taiwan and Singapore share the similarity that
healthcare professionals typically disclose a patient’s poor prognosis to families rather than to the
patients (especially older generation) to avoid depriving of hope from the latter and progress into
overt depression [27,61]. However, patients might lose capacity to have a conversation in relation to
preferred EOL care with families and medical teams if they age or their disease deteriorates.
5. Recommendation
ACP, which concerns mental capacity assessment, should be embedded into clinical practice for
older people with cancer to regularly examine their ability for decision making. Early intervention of
ACP is crucial through the care process for this population, so that a sufficient time can be provided
for older adults with cancer to enhance the patients’ understanding of the value and content of
ACP. Subsequently, an informed decision should be made with assistance from family members and
healthcare professionals when they still possess capacity. Patients’ mental capacity status should be
regularly monitored and evaluated in clinical situations, and patients should be allowed and assisted
to make a desirable choice about their care during the process of losing capacity.
Cultural difference is a crucial factor for successful ACP and should be considered carefully.
A person’s value and belief about EOL care and dying issues might influence his or her acceptance
of ACP discussion. The decision-making model in different cultures should be considered, and the
background knowledge about local perspectives on EOL issues are also important prior to an ACP
initiation. Furthermore, older people should be provided opportunities to engage in an ACP discussion,
although some might lose the ability to do so. Subsequently, the completion of ADs should be
encouraged among older people to ensure desirable care in the future. More studies about ACP for
this vulnerable group in different cultures and area are necessary to enhance the evidence in clinical
practice and research. Finally, corresponding legislation that underpins ACP intervention for older
people with cancer is imperative, and a culturally adapted ACP discussion should be developed to
accommodate people with different cultural backgrounds and ensure the effectiveness for positive
outcomes. An Asian expert network on ACP consensus to construct a culturally sensitive framework
for Asians has recently been launched and aims to achieve this goal.
6. Conclusions
ACP is a process of thinking ahead to treatment choices, goals of care and/or appointing another
person to speak for oneself in the future. It has evolved from a legal, document-driven process to
a process of engaging patients, families and medical professionals in conversations about wishes,
goals and preferences with respect to care. An increasing number of patients and families have
been reported to value ACP, but the majority of previous research has been undertaken in Europe or
North America, with little evidence in the other side of the world. A lack of empirical evidence to prove
the effectiveness of ACP among older people with cancer in the world is also noted. For this group of
people, the assessment of mental capacity is a special concern and should be embedded into routine care
prior to the ACP initiation. Cultural context on patient autonomy and local jurisdictions underpinning
ACP should be considered when we engage older people with cancer into the ACP discussion.
Geriatrics 2018, 3, 43 9 of 12
The concept and practice of relational autonomy might be ideal for the share decision-making in the
ACP discussion between patients and their families or relatives due to the collectivism paradigm in
Asia. More evidence regarding the cultural appropriateness and acceptance of ACP among older
people with cancer in different cultures is urgently needed, as this population is expected to increase
sharply in the near future. Moreover, a cultural-adapted consensus of ACP regarding the definition
and recommendations for clinical practice should be a research priority in Asia.
Author Contributions: Conceptualization, C.-P.L. and P.-J.C.; Literature Searching and Appraisal, C.-P.L., S.-Y.C.
and P.-J.C.; Writing-Original Draft Preparation, C.-P.L. and P.-J.C; Writing-Review & Editing, C.-P.L., S.-Y.C. and
P.-J.C.
Funding: The research was funded by Ministry of Science and Technology, Taiwan (grant reference: MOST
104-2511-S-384-002-MY3) and Kaohsiung Medical University Hospital (grant reference: KMUH106-6R74).
Acknowledgments: The authors thank Professor Julian Hughes in University of Bristol, UK and Hsiu-I Yang,
associate professor in National Yang-Ming University, Taiwan, for their inspiration and contribution of the
theoretical framework.
Conflicts of Interest: The authors declare no conflict of interest.
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