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Promoting Health, Wellness and Quality of Life at the End of Life

Article · December 2014

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RESEARCH ARTICLE

 Promoting Health, Wellness, and Quality of Life

at the End of Life
Hospice Interdisciplinary Perspectives on Creating a Good Death
Michael A. Pizzi, PhD, OTR/L

The purpose of this phenomenological study was to profound understanding of the importance of active
answer the broad questions: what do professional care- participation in one’s life until the end of life, the cre-
givers for the dying think about what they do, and how ation of meaning and connecting through active partic-
does that thinking influence their practice in end-of-life ipation in daily life activity, and the positive impact on
care? The participants were 12 hospice professionals
the implementation of those concepts on the well-being
working in four specific disciplines: occupational ther-
and quality of life for clients and families.1,2
apy, physical therapy, social work, and nursing. In-
depth interviews were conducted and audiotaped, and The professionals who work within a hospice philos-
transcripts were printed. Constant comparison and the- ophy have unique views and attitudes towards develop-
matic analysis was performed. One overarching theme ing caring and compassionate relationships. Overlap-
and five subthemes were generated. The central theme, ping roles and responsibilities require teamwork and
“promoting a good death,” emerged from the data, as professional attitudes and behaviors while maintaining
the participants continually discussed health, wellness, one’s professional identity. This teamwork facilitates
and quality-of-life work in which they engaged that well-being and health promotion for all people at the
were discipline-specific yet overlapping. The subthemes end of life so that physical, social, emotional, and spiri-
that emerged were: holism; framing and re-framing tual needs of clients and families are fulfilled as much as
practice; client- and family-centered care; being with
possible. When the quality of life and well-being of indi-
dying; and interdisciplinary team. All participants con-
viduals are enhanced, the vision and philosophy of
cluded that their work emanated from a health and
wellness lens, and that quality of life at the end of life hospice care is realized.
was their ultimate goal. Quality of life, for each disci- The intent of this paper is to describe hospice profes-
pline, included doing, being, and becoming one’s sionals’ views on end-of-life care, what they think
authentic self until the end of life. J Allied Health 2014; about what they do as professionals, and how that
43(4):214–223. thinking influences their practice in end-of-life care.
Professional attitudes about end-of-life care will be dis-
cussed, followed by the integration and application of
health and well-being in end-of-life care. The study that
PROFESSIONALS who work with people at the end of
follows the literature explores the perspectives of hos-
life ascribe to the principles of compassionate care
pice health professionals on health, well-being, quality
understood by hospice professionals. The hospice phi-
of life, and end-of-life care. <AU: meaning clear?>
losophy embraces and promotes the concepts of dignity
and the promotion of quality of life until the end of a
Professional Attitudes and End-of-Life Care
life. Hospice also focuses on the family as the unit of
care. This unique form of care promotes the health,
Each discipline discussed in this study has professional
well-being, and healing of the dying and their families at
documents related to end-of-life care. Professional atti-
the end of life. To that end, health professionals have a
tudes, ethics, and best practice are described in all of the
documents. Occupational therapy (OT) and social work
Dr. Pizzi is Assistant Professor, Department of Occupational Therapy,
(SW) position papers discuss the need for compassion,
Long Island University, New York, NY. dignity, and respect for clients; being adaptable to the
needs of clients and families; and having deep self-reflec-
<AU: pls note any funding or conflicts> tion, or therapeutic use of self, to monitor one’s own atti-
RA1396—Received Nov 17, 2013; accepted May 5, 2014.
tudes, values, beliefs, and feelings when working in end-
of-life care.3,4 Physical therapy (PT) discusses the need for
Address correspondence to: Dr. Michael A. Pizzi, Occupational Therapy compassionate care with an emphasis on how physical
Department, Long Island University, 60 Sutton Place South, 2BS, New therapy practice can improve quality of life.5 Nursing
York, NY 10022, USA. Tel 347-385-4207. [email protected].
emphasizes the skills a nurse possesses to implement
© 2014 Association of Schools of Allied Health Professions, Wash., DC. patient-centered, competent, and compassionate care.

214
Their emphasis also appears to be on educating nursing care, it is essential that social workers have an ongoing
students in end-of-life care and developing an ongoing positive regard for clients at the end of life and self-reflect
evidence base in palliative care.6 All papers reflect the on one’s own values, beliefs, and attitudes.
need to interact as an interdisciplinary team, with the The attitudes and communication of health profes-
focus being on the client and family. They also discuss sionals are the most significant determinants of inter-
the professional attitudes and professional behaviors disciplinary teams:
necessary for effective work in end-of-life care.
Three components of attitudes reflecting cumulative Staff members must focus on the needs of the client and
set aside individual differences and potential competitive-
prior perceptions and experiences have been articu-
ness among disciplines…. Professionals must view them-
lated.7 These are the cognitive, affective, and behav- selves as having the potential and responsibility of main-
ioral components of attitudes. The cognitive compo- taining interventions initiated by persons outside their
nent explores the need for adaptation to events or own discipline.14(p413)
situations that represent professional dissonance and
the need for balance. While negotiating that need, a This conceptual framework is consistent with hos-
change in attitude may be experienced. Affective pice teaming. One of the physical therapists inter-
includes seeking and avoiding behaviors. In end-of-life viewed in the current study spoke about his views of
care, for example, professionals may avoid working other health professionals. He discussed the difficulty
with the dying due to a level of discomfort or may of obtaining referrals because other health profession-
choose work in end-of-life care because they feel more als would judge a person by how they “looked” versus
comfortable. Finally, the behavioral component is the what they were capable of doing or what they wanted to
action taken by the individual, either seeking palliative do despite limited time. He saw early referrals to ther-
care work or avoiding the context altogether. apy services as crucial, as it would help to improve a
There have been studies of attitudes of nurses who patient’s “quality of life and changes their whole atti-
work in a gerontology unit and encounter frequent tude about living.” This, he noted, is the essential phi-
deaths. One study noted that compassionate care at the losophy of hospice. He discussed great frustration that
end-of-life requires positive attitudes and interpersonal the team did not approach care with quite that same
competence towards the dying.8 The authors showed philosophy. His view is similar to the outcomes of a
that more positive attitudes significantly correlated study that described the role of the physical therapist as
with years of education and number of deaths to which primarily intervening with exercise and health educa-
participants attended. Another study surveyed 360 tion and who were highly dependent upon nursing
nurses and found that palliative care nurses had more referrals.15 Thus, it is crucial, in end-of-life care, that
positive attitudes about end-of-life care than others.9 professional attitudes and knowledge about each
Both studies concluded that more undergraduate educa- others’ skills are essential when working to best serve
tion in end-of-life care was needed to increase interper- clients and their families at the end of life.
sonal competence and attitudes towards death and While the participants involved in this study had a
dying in end-of-life care. depth of experience with end-of-life care, their narra-
In a seminal article on occupational therapist per- tives demonstrated that they actively chose hospice
spectives and dying, Bye10 found that occupational ther- care as their primary work environment. This in turn
apists had positive attitudes towards death and dying reflects a positive attitude in the affective and behav-
when working in end-of-life care. However, the shift in ioral areas mentioned above. The professionals inter-
attitude about practice, that of helping clients progress viewed for this study also had several years of clinical
in function versus improving quality of life and main- experience in end-of-life care. The decisions made by
taining function throughout the dying trajectory, was the participants to engage in end-of-life work were often
found to be crucial to engage in best practice. This has due to personal reasons (see the narratives below).
also been cited as “rehabilitation in reverse,” where However, the literature does highlight a need for more
therapists often have a baseline of function that may end-of-life care training in academic preparation of pro-
slightly improve in initial stages with subsequent care fessionals, primarily to expand both the affective and
having the goal of maximizing function as the client behavioral components.
tends towards death.11
There has been research regarding the role of social End-of-Life Care and Health Promotion
work in hospice as a major team player on an interdisci-
plinary hospice team. There was also an emphasis on Health promotion is defined by the Ottawa Charter for
ensuring positive attitudes, values, and beliefs about com- Health Promotion (OCHP) as “the process of enabling
passionate care.12 “Both palliative care and social work people to increase control over and to improve
reflect philosophies of caring that consider individuals in health.”16 It emphasizes that people require opportuni-
the full context of their lives.”13(p79) In order to deliver this ties to have their needs met, to realize hopes and

Journal of Allied Health, Winter 2014, Vol 43, No 4 215

dreams, and to have the chance to develop adaptive The approaches taken by health professionals in
capacity to face environmental challenges. “Health is hospice and palliative care are viewed not only
therefore seen as a resource for everyday living, not the through the lens of medical models but through models
object of living. Health is a positive concept emphasiz- and theories in health promotion and wellness. With a
ing social and personal resources, as well as physical foundation in health promotion, health professionals
capabilities. Therefore health promotion is not just the can adapt their skills and talents for the terminally ill
responsibility of the health sector, but goes beyond and their families and explore more deeply the concept
healthy lifestyles to well-being.”16(p5) of facilitating a good death. Several decades ago,
While cure is optimal, quality of life can be enhanced Capra26 identified the need for a paradigm shift in
through palliative care programs.17 Palliative care pro- thinking on health and healing from a biomedical
vides the following: model to a systems perspective. True healing requires
abandoning a “reductionist” focus on mechanical
• relief from pain and other distressing symptoms; functioning and incorporating the total human being,
• affirms life and regards dying as a normal process; including the “complex interplay among the physical,
• intends neither to hasten nor postpone death;
psychological, social, and environmental aspects of the
• integrates the psychological and spiritual aspects of patient
care;
human condition.”26(p123-4)
• offers a support system to help patients live as actively as In a 2003 paper, a nurse-researcher, committed to
possible until death; promoting health at the end of life, connected health
• offers a support system to help the family cope during the promotion and palliative care:
patient’s illness and in their own bereavement;
• uses a team approach; Everyone has a right to the best health, even those who are
• enhances quality of life; dying. In the trajectory of chronic illness, as the individual
• is applicable early in the course of illness … to better under- comes closer to death, actions that advance health con-
stand and manage distressing clinical complications.18 tinue to promote a better quality of life, and finally a better
death…. Health promotion may allow ... persons and their
The philosophies of palliative care and health pro- caregivers to be free of avoidable stress and suffering, and
motion both hold that: to have a more active role in treatment.27(p45)

• Health and illness are fluctuating conditions. Early discussions with patients and significant others
• Individuals are integrated organisms in which the elements allow for the opportunity to consider improvement,
of mind, body, spirit, emotions, and environment are inter- maintenance, or decline of function in a way that may be
related. less threatening. The dying trajectory is individual, and
• Individuals are not only adaptive, but also have the poten- people can optimize function within the limits of the dis-
tial to transcend difficulties and create new patterns of
ease process. The changes do not reflect a failure of the
behavior enabling continuation of a meaningful and satis-
fying existence.
patient, family, or health professional, but a natural
• A humanistic approach to health care is directed to the qual- process at the end of life, and this needs to be discussed
ity and dignity of life, not necessarily its prolongation.19(p46) openly with the patient and significant others if or when
they are prepared to do so. Hopefulness is discovered by
Palliative care is more accurately described as a reaffir- the dying patient in the living of each day.2 According to
mation of living with dignity and hope.20 Practitioners the American Academy of Pediatrics,28 children and
must negotiate both the goals of a safe and comfortable adolescents dealing with the harsh realities of a life cut
dying with maximized living and quality of life. Contin- short are also entitled to discovering hopefulness
uous re-examination of the goals and adaptation of the through developmentally appropriate assessment and
plan of care during the dying process is a crucial element interventions while also listening to a child’s preferences
in the provision of hospice therapy services. In hospice and choices. “In addition, aspects of an integrated pallia-
and end-of-life care, treatment planning and goals must tive care approach, including symptom management and
be agreed upon by the patient and family with an under- counseling, may prove beneficial when provided early in
standing of the limited timeframe; realistic and individu- the course of a child’s illness.”28(p352) The Academy is
alized short- and long-term goals need to be set.21–23 Yet, committed to client- and family-centered care and a con-
rehabilitation in palliative care is a paradox24 and is cern for the occupational choices of children and adoles-
viewed as rehabilitation in reverse.11 For example, two cents that support improved mental and emotional
studies by Bye et al.10,25 have discussed occupational ther- health of children and their quality of life.
apists’ perceptions of palliative care OT practice and
explicated strategies to reframe practice. When rehabili- Purpose of the Phenomenological Study
tation is re-examined through the lens of palliative care,
practice shifts from making progress to ensuring that One prior study has examined the roles of occupational
quality of life and well-being are sustained until death. therapy, physical therapy, and speech-language pathol-

216 PIZZI, End-of-Life Hospice Care

ogy in hospice and palliative care.29 While this was a ended questions (see Appendix A).* Before each inter-
review of interventions of these professions, nowhere view, approval was obtained from the participant for
did it recognize prevention, health, or well-being. The audiotaping. Consent forms and demographic forms
focus was on functional outcomes, often through the were mailed to participants and were thoroughly
utilization of standardized assessments. This investiga- reviewed for completion when received by the investiga-
tor, as a practitioner in end-of-life care since early in his tor. A semi-structured interview format was chosen to
career, always focused on prevention, health, and well- help guide the interview and to shape the narrative
being issues until death. He recognized that continuous around the major questions. This was a one-time data
adaptation of the person, skill, or environment main- collection with no follow up. The interview questions
tained self-efficacy for clients and families and pre- used were open ended in order to allow free-flowing con-
served dignity and quality of life. For this study, he versation to occur, and for the investigator to burrow
wished to investigate if, at least conceptually, this idea deeper into any given response. At any time, the partici-
was shared with colleagues of various disciplines. pant was free to terminate the interview or to request
The purpose of this study was to answer the guiding that certain narration be stricken from the transcript
primary questions: What do professional caregivers for during the interview only in order to provide a safe,
the dying think about what they do, and how does what open, and honest interaction between the researcher and
they think affect their practice? The valuing of human participant. No interviews had any narration deleted.
life and the facilitation of meaning in that life at the end Six interviews were by phone and six in person due
of life requires the creation of a positive philosophy of to some participants’ living geographically distant from
care. This philosophy considers both the being and the investigator. There were no limitations in clarity of
doing process of living, which facilitate dignity and self- interviews and their transcriptions. Interviews were
respect. The investigator chose to study hospice health conversational and semi-structured. Length of inter-
professionals to answer the following three subquestions: views ranged from 45 minutes to 2 hours depending on
how forthcoming participants were in responding. For
1. How do health professionals who work with the dying and example, one participant answered questions with 1- to
their families describe what it is they do? 2-sentence responses with little else after being
2. When developing plans of care and interventions, what
prompted for more, while another was asked one ques-
frames their decisions?
3. Are there “wellness” perspectives included in their work?
tion and talked for 20 minutes to only that question.
The authors’ study examined the content of narratives
no matter the length or type of the interview. In a pre-
PROCEDURES
vious study of corrections officers’ perceptions of visits
to county jail inmates, telephone and face-to-face inter-
The Heidegger approach involves “being in the world,”
views with were compared to determine differences,
meaning everyday knowledge (and experience) is used
by the researcher to arrive at some meaning about that and no significant differences were found.34
All audiotapes were transcribed by a paid transcrip-
being studied.30 The investigator chose the Heidegger
tionist. As each was returned to the investigator, each
approach because it addresses issues of investigator
audiotape was listened to by the investigator while read-
reflexivity. He recognized his own experiences as an
ing the transcript to establish reliability of the data.
end-of-life care occupational therapist and wanted to
After this was established, each was sent to participants
minimize conflict with the data collection and analysis.
to again verify each person’s transcript. This served as a
As stated by Primeau, “the purpose of reflexivity is to
participant check. No participant declined this request
enhance the quality of the research through its ability
and all verified their own narratives. Rigor in develop-
to extend our understanding of how our positions and
ing the themes from the data included reading the tran-
interests as researchers affect all stages of the research
scripts several times, coding the data, and a thematic
process.”31(p10) For this phenomenological study, induc-
analysis performed by a colleague with experience in
tive analysis, which focuses on developing links, pat-
qualitative research for a cross-comparison of themes.
terns, and themes that emerged from the data, was used.
Constant comparison and coding was used to ana-
“Phenomenologically driven studies are usually induc-
lyze data. Triangulation and rigor were achieved
tive; their results are generated from the study data, and
through utilizing the same interview guide for each par-
few explicit assumptions are made ahead of time about
ticipant, using member checks, and having a thematic
study informants or events.”32(p135) Open coding33 was
analysis of the data performed by a colleague for a
used so that all data were explored and the investigator
cross-comparison of emergent themes. The researcher
was “open” to the possibilities that existed for linkages
being made. Any a priori assumptions that are later
explored in the section on reflexivity were also noted.
* Appendix A appears in the online version of this paper, available at
After participant selection, each participant was inter- www.ingentaconnect.com/content/asahp/jah, see Volume 43, no. 4,
viewed either in person or by telephone using open- Winter 2014 issue.

Journal of Allied Health, Winter 2014, Vol 43, No 4 217

 TABLE 1. Participant Demographics TABLE 2. Themes and Subthemes
Years in Central Theme
Age Years in End-of-Life Promoting a good death
ID Code* (yrs) Gender Practice Care
Themes Subthemes
OT1 30 F 5.5 2 Holism Wellness
OT2 34 F 11 9 Quality of life
OT3 53 F 22 2 Balance
PT1 62 F 41 9 Peacefulness
PT2 47 M 23 16 Healing
PT3 30 F 6 5 Framing and re-framing Personal-professional
SW1 32 F 6 6 practice influences: a give and take
SW2 53 M 25 8 Spiritual framing
SW3 43 F 6 4 Medical and non-medical models
RN1 52 F 33 13
RN2 52 F 28 5 Client- and family- Adaptation
RN3 38 F 16 7 centered care Client goals
Choices
Mean 43.84 2M, 10F 18.5 7.2
Range 30–62 5.5–41 2–16 Being with dying Connectedness

*OT, occupational therapy; PT, physical therapy; SW, social Interdisciplinary team
work; RN, nursing.

also examined all field notes and observations that sup- of the research.”35(p46) Referrals for participants were
ported the data. generated by the researcher’s resourcefulness and con-
tacts in the past with, particularly, OTs and PTs who
PARTICIPANTS were hospice affiliated. They, in turn, referred others in
the field. Three participants from each of the profes-
Four health professional groups (nursing, social work, sional groups (nursing, social work, OT, and PT) were
occupational therapy [OT], and physical therapy [PT]) interviewed for a total of 12 participants. It must be
were chosen for study. Inclusion criteria included noted that Medicare-certified hospices must have con-
having worked in end-of-life care for at least 2 years tracts with OTs and PTs (as well as speech-language
fulltime. Nursing and social work were chosen because pathologists). Rehabilitation professionals are often
they are major team members on the interdisciplinary underutilized and are not often hospice or palliative
team and their perspectives would be deemed very valu- care affiliated, thus very difficult to locate. The investi-
able. OT was chosen because the investigator is an OT gator did contact the American Occupational Therapy
with vast hospice and end-of-life care experience, and Association (AOTA) and the oncology section of the
the perceptions of other OTs were of keen interest. PT American Physical Therapy Association (APTA) for
was chosen because it is a sister profession to OT, albeit leads. The latter yielded 1 participant.
one whose philosophy and approach to care is uniquely The demographics of the participants can be found
different. For this study, the OTs and PTs all worked in Table 1. The ID code was assigned to retain
fulltime in end-of-life care. anonymity of participants. They were coded according
Some professional groups were not studied for the to the order in which theywere interviewed along with
following reasons: (1) physicians were not studied due a professional identifier.
to their frequent unavailability and because, in hospice,
their primary role is that of “referral base” for therapies Results and Discussion
and nursing rather than a direct-care hospice service
provider; (2) the chaplain/spiritual advisor, a crucial From the data emerged a central theme of “Promoting a
team member, was not studied because the investigator Good Death” along with five other themes and sub-
wanted to focus on those working from a healthcare themes (Table 2). Each of these themes overlaps (Fig. 1).
background; (3) speech-language pathologists were not The following is a brief discussion about each theme
studied because their utilization in hospice is very low, with participant narrative as supportive data.
and it was very difficult to find any who worked at least
2 years fulltime in end-of-life care. THEME 1: HOLISM
Purposeful sampling was used in this research due to
the chosen participants being “information-rich cases.” Several subthemes emerged from this theme: wellness,
“Information rich cases are those from which one can quality of life, balance, peacefulness, and healing.
learn about issues of central importance to the purpose According to the American Holistic Health Association:

218 PIZZI, End-of-Life Hospice Care

 Holistic Health is actually an approach to life. Rather than
focusing on illness or specific parts of the body, this
ancient approach to health considers the whole person
and [interactions] with his or her environment. It empha-
sizes the connection of mind, body, and spirit. The goal is
to achieve maximum well-being, where everything is func-
tioning the very best that is possible … people accept
responsibility for their own level of well-being, and every-
day choices are used to take charge of one’s own health.36

Occupational therapy as well as other health disci-

plines view the person (client) from a holistic perspec-
tive. This perspective includes the psychosocial, physi-
cal, spiritual, and emotional factors relative to
evaluation and treatment. RN3 spoke about promoting
well-being by remaining holistic versus medical in her
focus:
FIGURE 1. Themes of the study. Graphic created by S. Maggie
(RN3) For me, specifically and how I practice, I don’t think that Reitz.
dying is a medical event and so that’s how I think I keep it in a
more holistic realm in promoting well-being as opposed to some
physical thing that’s happening. One of the more powerful narratives came from a
physical therapist, a profession one might assume is
SW3 and PT1 similarly addressed holism through the more closely aligned with the medical model. PT1 spoke
lens of wellness: about the impact of hospice on his personal and profes-
sional relationships. His statement that he works part-
(SW3) I think wellness doesn’t mean necessarily that you are
healthy and happy. I think wellness means that you are dealing
time so he can be more actively involved with his chil-
with a situation in a way that is true to you and minimizes self- dren and family demonstrates his need for balance with
horror or self-destructive behaviors. personal and professional relationships. He also stated
(PT1) Wellness for any of us is functioning at your capacity with
that his own priorities and values regarding relation-
acceptance of your limitations. Wellness is emotional satisfaction ships in life are reflected back to his work:
as well as physical; you can’t separate the two in my mind.
(PT1) And I know anyone I meet, whether it’s a knee replace-
To most of the participants in the study, treating ment, stroke, terminal cancer, they want their body to do what it
can do. But to give them the opportunity to control what they can
holistically and viewing people at the end of life
control, to get them to do what it’s capable of, that feels good. So
through a holistic lens was equivalent to promoting
that part’s always a pleasure. I like to be with people, and when
health and well-being at the end of life. they hear they are going to die, all the superficialities of life start
to fall away, so people are not as much about their status or
THEME 2: FRAMING AND RE-FRAMING PRACTICE appearance but more concerned with their relationships, and I
like to be around that.
In the course of the interviews, the participants recog-
nized the dichotomy between wellness perspectives and This narrative embraces all of the subthemes that
the medicalization of clients. They stated they did emerged from the data and speaks clearly to how prac-
indeed work from a wellness perspective despite, as one tice, no matter the profession, may need to be re-framed
participant stated, “the medicalism of the system.” for people when caring for those at the end of life.
There was a blending, a fit, that worked for them per-
sonally and professionally. Well-being and wellness can THEME 3: CLIENT AND FAMILY-CENTERED CARE
be goals for people with terminal illnesses. These goals
are facilitated by health professionals through a con- Client and family-centered care is related to respecting
scious change in thinking, or a reframing of practice, those with whom health professionals work as well as
regarding the dying trajectory and the importance of partnering with them on the services being received. As
occupational engagement for enhancing meaning, spir- Law, Baum and Dunn, three occupational therapists,
itual connectedness, and quality of life.1,2,25 As SW3 have stated: “We celebrate everyone’s ability to find
responded, “You have to be the container of hope and the sources of meaning and bring their resources to the …
container of reality too.” The subthemes of “Framing and intervention process when using a client-centered
Re-framing Practice” include (1) professional-personal approach.”37(p7) Under the nursing philosophy, the goal
influences: a give and take; (2) spiritual framing; and (3) of client-centered care is “to create a caring, dignified,
medical and nonmedical models. and empowering environment in which clients truly

Journal of Allied Health, Winter 2014, Vol 43, No 4 219

direct the course of their care and call upon their inner with rehab, outpatient, private, and I find that the home setting is
resources to speed the healing process.”38(p128) the most nurturing for them as well as the most satisfying because
All of the participants interviewed spoke about the I’m a people person.
client-centered approach or philosophy, some of which
has already been discussed. Some of the key quotes are THEME 4: BEING WITH DYING
included in other sections and will not be included here
due to theme overlap. Throughout the client-centered Several participants stated that there was a “doing”
theme, three subthemes emerged: (1) adaptation; (2) process in one’s dying. This meant that clients and fam-
client goals; and (3) choices. ilies were engaged in doing things in their lives, “finish-
OT1 extends her holistic approach to the family ing business,” being productive, and the health profes-
regarding after-death work. She integrates the concept sionals working with them assisted in this “doing”
of wellness with that of self-management, explaining process. However, a major theme that emerged related
that well-being can be facilitated by teaching people not so much to the doing of daily life activity but to the
how to best manage their lives during and after a death: “being” process of dying. There was a clear emphasis
with participants about clients and families being
(OT1) Bereavement is another area that I think could be broad- engaged in the “being with” process. One subtheme,
ened. Things need to be proposed in a more educational sort of connectedness, also emerged as participants spoke of
way. You need to get people away from thinking that their well- how they were able to “be with dying”:
ness is going to come from someone doing something for them. But
maybe their wellness is more based on being taught how to take of (PT2) A lot of hospice people do that, what I call being with
themselves, self-management, on many levels. dying. You don’t have to do anything, but you keep coming back,
keep listening. It honors them, it shows them that they have value,
Other professionals expressed client-centered care they have meaning even though power changes in their existence
from their own professional lens: [are] occurring. It just opens up all of these things which allows
them to let go of what they need to let go of in this world.
(PT2) I think I would like to play a more active role in pain man-
agement and also relaxation techniques, something to make the PT2 went into greater depth with his explanation of
family and patient feel more comfortable in the last stages.
“being with dying,” connecting the concept to one’s per-
(SW1) Hospice is wonderful work. It has some very good clinical sonal attitudes about death and dying and having a
byproducts of really getting people at an emotional, wide-open client-centered perspective:
time, so it’s wonderful to do in that way. You are not just treating
one person. You are often treating a family member. I’ve had pri- (PT2) By dealing with your own dying actually is what makes it
mary caregivers who are neighbors or who are cousins…. What’s comfortable with being with other people. To me, that’s the reason
important with hospice is that we are never dealing only with the why people don’t want to see hospice patients, because of their
patient. There is always somebody else. The patient’s reaction or own personal issues with their own dying. You have to open up
status very much affects how that other person is doing. with your own grief, your own loss, to realize that you are no dif-
ferent than they are. They bring that up [not verbally, but by the
RN2 believed that one needs to make “people’s lives mere fact that the client is dying and the health professional is
work” for them during and after a death (helping them experiencing that]. If you tighten down inside, you’ve got to be
adapt) and sees this as facilitating well-being for families: able to sit with their pain, your pain with their fear. If their fear
makes you afraid, you won’t be able to help them.
(RN2) The well-being for patients and their families can be facil-
itated by obviously making the symptom management work for Both PT1 and RN2 used the term empowered in their
them and home management work for them, relieving as much of descriptions of “being with dying”:
the stress factors as they can so that they can not only be at peace
with what’s going on, but to also be able to do with everything else (PT1) So what I do is show them where they are still capable and
going in their lives. It’s very hard to just pull families out of their empowered, and recognize and validate the difficulties they are
jobs and their other family responsibilities and have them just having and give them the opportunities to let me know what in
focus on what’s going on. I think it’s important to have people’s that process is going to be acceptable…. No matter what this
lives work for them while this is going on. person is, they are a valued human being, and if I could give them
anything, it’s for them to continue to consider themselves as valued
When asked what makes her work meaningful, PT1 human beings.
responded:
(RN2) Not everybody is helpless but a lot of people are. They just
(PT1) You can’t be serious! It’s a joy, it’s a treat. I got into home don’t know what to do. My goal is to empower them to be able to
care years ago in San Francisco and immediately fell in love with do it for themselves. We don’t always have somebody that can be
the discipline. Here you are treating families, you are not treating there all the time, so I try to make people more independent.
individuals or hips or knees, you are treating entire families in
their home setting and environment. That’s an honor. You are a RN2 offered a case example of “being” with people
guest in their home and you become so much more a part of them in the last stages of life and allowing the process of
quicker than in any other way I’ve found, because I’ve done it all interaction between human beings to unfold:

220 PIZZI, End-of-Life Hospice Care

 (RN2) The story that pops into my mind right now is a situation other social workers work as a team with their own people. At the
a good 4 years ago, where there was a nurse who had her mother same time we meet in team meetings so that we all have a flavor
in her home. She was close to 60, working part-time as a nurse, of what we are doing. There is overlap. There can always be
she had a lot of sisters, a huge family, and her mother who was in more teamwork. The difficulty has to do with time.
her late 80s was dying in her home with pancreatic cancer. And (OT2) We all are very closely linked, and what happens is that
even though the daughter was a nurse, she really had a hard time we all sort of overlap…so what we try to do is have things like a
talking with her mother about what was going on and her mother family conference and sit the family down with all of our team
really was not verbalizing anything about her illness and didn’t members and talk about what we can offer the patient while they
know her prognosis, an elderly Irish woman, very sweet dear are on hospice in order to ease the dying process and to make
woman. When I first got in there 3 or 4 months earlier, everyone things easier on the family.
was scared and afraid to talk about it. The patient never really (OT3) We are all inspired by similar goals which are to allow the
expressed any of her fears except for one time: she had a month person to die peacefully, exactly as they want to, and we all bring
left to live, and her daughter was in earshot, but she kind of our particular bag of tricks or skills, personalities, into the home and
wanted me to leave her alone with her mother because she was we have different parameters…. We are all looking at the whole
hoping her mother would open up some. Over the course of time, person, and also the family finds who they resonate with and that’s
just by my being there, twice a week, and taking them step by who they spend more time with or open up more with. It might be
step, very slowly toward what was going on physically and what the chaplain, the bath aide, the nurse, the OT, the volunteer.
the realities were, that I was able to get them in the end in a place (RN1) I like working so closely with an interdisciplinary team, I
where everyone was accepting of what was going on and her really like that. I really like working with the social workers and
mother had a beautiful death. I was just so impressed with the quality of their profession.

Connectedness is “helping clients to realize their Conclusion

goals to connect with life, and people in their life, on a
level beyond illness and receipt of care.”10(p19) Five major themes emerged with an overarching theme
of “promoting a good death” that links all five themes.
THEME 5: INTERDISCIPLINARY TEAM Discipline-specific strategies and philosophies of care
for people at the end of life emerged from the data.
The respect and appreciation for each team member was However, it became clear that each discipline, as an
described repeatedly by all of the participants. The hos- interdisciplinary team member, recognized the value of
pice team is guided by the creation of a community of other team members and that quality of life, health, and
caring professionals that experience shared work with well-being until death were the ultimate goals in end-of-
clients and families. While some participants, particu- life care.
larly the therapists, made a concerted effort to express In an ethnographic study of occupation and its com-
their need and frustration for more referrals and plex nature as it related to the dying process, Jacques
involvement, all expressed how teaming was the most and Hasselkuss stated: “The conclusions drawn from
important aspect of hospice care to promote overall this study of occupation at the end-of-life are that occu-
well-being for people at the end of life and their families: pation is the good death experience and that enabling
occupation in an end-of-life care environment, such as
(SW3) Everyone’s participation in the team, in being a team
a residential hospice, can help bring about a good death
member, is kind of like a springboard to facilitate wellness in the
family. So that and having a holistic mindset.... I also know that
experience for all involved in the dying process.”39(p53)
the individual players care very much and are tremendously hard The literature on a good death and promoting a good
workers. It’s just a good group of people. The nurses are aware of death is expanding but still limited. Health profession-
dynamics that are happening in the family, just as the social als in end-of-life care need to continue to write and
workers are aware of the medical issues and how that affects the research factors that promote a good death.
whole systems. From this study, each of the emergent themes related
to the research questions. All themes intersected with
SW3 spoke of this holistic approach, whereby she each other. For example, in discussing the theme “being
described her belief that each discipline had an aware- with dying,” the investigator recognized that if one was
ness of other issues affecting the person and family. not client and family-centered and connected in some
Other participants believed that there was constant way with the client-practitioner interaction, one could
overlapping of professional roles, which made for a not “be with” either the client and family or with the
stronger team to facilitate well-being at the end of life: process of dying. Although the separations became
more apparent as the transcripts were reviewed, the
(SW2) I also find it very satisfying to work with the nurses, to help
and support them. I think that they have by far the much more
interrelatedness of the themes was not surprising. “Pro-
difficult job than social workers. I just think in terms of the moting a good death” as the central theme, given that
amount of information they need to know, the details of their each participant chose hospice as their work environ-
work — I could never do such a job.… I work as a team with the ment, was also not a surprise, given that promoting a
nurse, the chaplain, the volunteer, the home health aides. The good death is the goal of hospice care.

Journal of Allied Health, Winter 2014, Vol 43, No 4 221

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ADDITIONAL RESOURCES
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http://www.apta.org/PatientCare/HospicePalliativeCare/: Ameri- dofLifeCare-PU0204.pdf: Information on the role of social work
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position on end-of-life care from the American Nurses Associa- www.ingentaconnect.com/content/asahp/jah, see Volume 43, no. 4,
tion (ANA). Winter 2014 issue.

Journal of Allied Health, Winter 2014, Vol 43, No 4 223

 Appendix A. Interview Guide with Additional Guiding Questions
Answers Which
Questions Subquestions and Researcher Interests Research Question
1. Please identify the profession you are in 1a. Life experiences or people that influenced
and how you came to choose that occupational choice.
professional path. 1b. If always a hospice professional, death and 1 and 2
dying experiences that may have
influenced choices.
2. In your own words, describe how you 2a. Why hospice of all possible environments 1 and 2
became interested in hospice care versus in which to work.
other types of care. 2b. Experiences leading to an occupational
choice.
2c. What about hospice (e.g., team, philosophy,
focus on family) led to this decision?
3. Describe what you do with the terminally 3a. Step by step analysis of care provided. 1 and 2
ill and their loved ones. Can you provide 3b. How do you come to conclude that this is
a couple of examples? what you should be doing for any particular
person or family?
3c. What type of assessment process is involved?
4. What makes your work with the dying 4a. What is your idea of meaning-making? 1 and 2 and 3
and their loved ones meaningful to you? 4b. How does what you do create meaning for this
group of people (if at all)?
4c. Is there a personal story of your own that
influences why your work is so meaningful
to you?
5. If you could provide anything for the dying 5a. What are your fantasies about providing the 1 and 2 and 3
and their loved ones, regardless of funding best care possible if you could (unless partici-
issues or any other possible barriers, could pant states that the best care is already pro-
you describe what that would be? vided—this might have something to do with
the environment in which the care is provided)?
5b. Are there frustrations behind why you cannot
provide what is described as “fantasy”
interventions?
5c. Look for an affective response to this question
and note it.
6. Please define “wellness” for me. 6a. What components of health are included in Sensitizing question to
the description? open up the idea of
wellness
7. Describe for me how well-being for the 7a. Is there a conceptual view of hospice and 1 and 2 and 3
terminally ill and their loved ones can be well-being that is similar to each other or
facilitated through hospice, if it is or can distinctly different for this participant?
be facilitated at all. 7b. Does the participant flow with ideas in the
description or are there pauses in thinking
about the merging of wellness and hospice?
8. Do you feel that what you do in hospice 8a. What is/are the model(s) of care used if any 3
could be implemented from a well-being (e.g., medical, holistic, social systems)?
model of care? If yes, how so and if not, 8b. What is this person’s conception of a “well-
why not? being model of care”?
9. Given your chosen field, would you say 9a. Does the participant even view facilitating 1 and 2 and 3
you promote health and well-being for wellness for the dying and their loved ones?
hospice patients and their loved ones? 9b. Is wellness seen as something within what
Can you give an example? they describe they do—is wellness nebulous
or tangible for the participant?
9c. In the example, is wellness described or is it
a repeat of the answer to Q3—or are they one
and the same?

223a
APPENDIX A. continued

Answers Which
Questions Subquestions and Researcher Interests Research Question
10. Can you describe how you facilitate well- 10a. What evidence does the participant give re: 2 and 3
ness in your own life? Do you think your personal wellness?
personal sense of wellness in your own life 10b. Does the participant see any correlation
reflects what it is you do with the dying between personal and professional
and their loved ones? interweaving?
10c. Is there a personal health belief around
caring for oneself?
11. What is your idea of how other hospice 11a. What is your idea of a hospice team and 2 and 3
team members facilitate wellness for the how it functions?
terminally ill and their loved ones, if at all? 11b. Does the participant perceive that wellness
is facilitated by others?
11c. What evidence does the participant provide
in their answer?
12. Do you have any questions for me or 12a. Provides for comments on the interview and
further comments to make? for reflection about what was discussed.

223b

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