WHAT CONSTITUTES A GOOD DEATH?
IMPLICATIONS FOR FAMILY NURSE PRACTITIONERS IN RURAL BRITISH
COLUMBIA
by

Cindy Allison Fehr
BSN, University of British Columbia, 1994
MEd, University of Calgary, 2004

PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE IN NURSING: FAMILY NURSE PRACTITIONER

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
April2013
© Cindy A. Fehr, 2013

UN~RSITYmNORTHERN

BRITISH COLUMBIA
LIBRARY
Prince George, B.C.

11

Abstract

Death is an inevitable part of each individual 's life. It is how that fmal event occurs and
the time prior to and during one's last phase of life that greatly influence the dying experience for
everyone involved. This project aimed to methodically and critically review research evidence
to identify key elements necessary for a good death from patients' perspectives. The final
number of articles totaled 35, with a dimensional analysis technique used to review and theme
data. A key message following data analysis was that there is a diversity of perspectives and
subjective characterizations of what constitutes a good death within and across sociocultural
groups. Contributions to a good death involved four overarching domains: 1) preparation for
death, 2) sources of support, 3) communication, 4) quality of life issues. The rural family nurse
practitioner (FNP) role in supporting a good death needs to be based on working to full scope;
engaging in end-of-life (EOL) care planning and anticipating life expectancy; providing holistic
and consistent care; engaging in multidisciplinary collaboration and effective communication;
providing caregiver support and education; engaging in continuing competence; and providing
leadership to ensure the best EOL care is available for all patients wishing to remain in their rural
home community to die.

111

Acknowledgements
Many people are to be thanked for the culmination of this project and degree; alone I
could not have succeeded. Thank you to my professors and each of my committee members for
your confidence in me. Specifically, for the reading, critiquing, and constructive feedback my
committee devoted to make this project the best it could be.
Thank you to my peers for your dedication to nursing and inspiration to keep plugging
along with a topic many consider morbid; nurses have a unique understanding of the reward felt
in helping someone live their best while dying.
Thank you for the endless prayers and positive well wishes from friends and co-workers.
Lastly, thank you to my ever present family for lifting me up when I was down and encouraging
me to keep putting one foot in front of the other. The light at the end of our tunnel has fmally
arrived. Words alone cannot express my sincere gratitude to everyone involved in this
journey ... THANK YOU!

"Death is the wish of some, the relief of many, and the end of all"
Lucius Annaeu Seneca - Roman philosopher and playwright.

lV

Abstract

Table of Contents
11

Acknowledgements

lll

Table of Contents

lV

Table of Figures

Vl

Chapter One
Introduction
Project Aim
Good Death
End-of-life Care
Family Nurse Practitioners
Primary Care
Population Context
Aging, Chronicity, and Death Demographics
hnpact of Rurality on care Delivery in BC
Chapter Two
Research Methods
Search Strategy
Stage One: Gathering Potential Relevant Resources
Stage Two: Re-screening Potential Relevant Resources
Stage Three: Reviewing for Relevancy and Appropriateness
Literature Reviewed
Analysis Technique
Chapter Three
Literature Findings
What Influences or Shapes our Good Death Ideal?
Philosophical Views on Life and Death
Individualism versus Collectivism
Personal Context
Sociocultural Influences
Gender
Geographical Residence
Age and Chronicity
What Do Patients Identify as Necessary for Achieving a Good Death?
Preparation
Closure and Generativity Activities
Logistical Decisions and Activities
Sources of Support
Communication
Quality of Life Issues
Providing Integrated Holistic Care

1

2

3
3

5

6

7
8

9

11
12
12
14
15
15
16
17
17
18
21

22

22

25
25
26

27
28
28
30
32
34
36
37

v
Maintenance of Dignity, Respect, and Personhood
Sense of Control
How Might a Rural Context of Care Impact a Good Death?
Chapter Four
Role of Family Nurse Practitioners in Facilitating a Good Rural Death
Advanced scope of family Nurse Practitioners
Holistic Care
End-of-Life Care Planning and Life Expectancy
Multidisciplinary Collaboration
Consistency of Care
Effective Communication
Caregiver Support and Education
Continuing Competence
Leadership

38
39
41
44
44
45
46

48

50
51
52

53

55

Chapter Five
Conclusion
Potential Limitations and Future Considerations

57
58

References

62

Appendices
Appendix A: Table of Evidence
Appendix B: Stage One Search Results
Appendix C : Manual Journal Search Results

74
82
86

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Table of Figures
Figure 1: Overall Search Strategy

12

1
CHAPTER ONE

Introduction
Death is an inevitable part of each individual's life. It is how that final event occurs and
the difficult decisions that transpire prior to and during one 's last phase of life that greatly
influence the dying experience for everyone involved. However pessimistic and morbid it
sounds, the reality is that 90 percent of Canadians are unlikely to experience a quick and painless
death, instead dying from the consequences of chronic degenerative or life-limiting conditions
(Carstairs, 2010). Objectively we know that approximately 30,000 British Columbians die
annually (British Columbia Vital Statistics Agency, 2011), but what makes one death better than
another? More precisely, what constitutes a good death, especially from the perspective of the
dying person? Understanding what constitutes a good death will thereby inform the role of
Family Nurse Practitioners (FNP) in providing end-of-life (EOL) care to support a quality dying
experience in rural British Columbia (BC).
Family Nurse Practitioners are Master 's prepared advanced practice nurses who possess
the knowledge, skills, and experience to independently or collaboratively diagnose and treat
common acute and chronic health conditions of patients across the lifespan, including care for
those at EOL (British Columbia Nurse Practitioner Association [BCNPA] , 2011 ; Canadian
Nurses Association [CNA], 2009; College of Registered Nurses of British Columbia [CRNBC] ,
2010b; Weiland, 2008). They uniquely combine the holistic, comprehensive, and personcentered approach of nursing, with a biomedical focus on diagnostics and therapeutics (BCNPA;
CRNBC, 2007 ; Weiland, 2008) . FNPs are increasing in number and taking on more significant
roles in rural primary care settings within BC, settings where consistent physician presence may
be limited. Therefore, they have been introduced into BC 's health care system with a goal of

2
helping to improve access to primary care services while supporting holistic and comprehensive
care (BCNPA).
Within the last decade there has been a swell of evidence-based best practice resources
aimed at clinicians caring for individuals during the terminal phase of life (Marshall et al. , 2008;
Melvin, 2001 ; Shipman et al. , 2008). Additionally, there are numerous resources reviewing the
role of primary health practitioners in rural practice (Canadian Association for Rural and Remote
Nursing, 2008; MacLeod et al., 2008 ; Misener et al. , 2008 ; Pong & Pitblado, 2005 ; Romanow,
2002), along with articles reviewing palliative care needs in rural settings (Crooks, Castleden,
Schuurman, & Hanlon, 2009; Downing & Jack, 2012; Evans, Stone, & Elwyn, 2003 ; Robinson
et al. , 2009). What has been less apparent is guidance for the unique role that FNPs have in
facilitating a good death, particularly within rural settings. As FNPs continue to take on greater
responsibilities within rural primary care in BC, it is important to understand how they can best
support a good death through quality EOL care for those residents wishing to remain in their
home community to die.

Project Aim
This project aims to systematically and critically review research evidence to identify key
elements necessary for a good death from patients ' perspectives. A critical analysis of these key
elements, along with how a rural context may impact these goals will inform recommendations
for FNPs working in rural BC. The specific questions asked in this project include: 1) What
influences or shapes our good death ideal? 2) What do patients identify as necessary for
achieving a good death? 3) How might a rural context of care impact a good death? 4) What are
the key implications for FNPs working in rural BC? The target audience for this review includes
FNPs currently working in or considering employment in rural BC communities with an
anticipated patient population inclusive of those living with chronic and terminal illness.

3
In order to guide the integrative review process and apply findings to the context of FNP

practice in rural BC, it is important to first understand background issues, perspectives, and
questions informing the problem formulation and boundaries of the review itself. Therefore, the
remainder of this chapter will summarize pertinent background information that serves as the
foundation for initiating the integrative review and applying the fmdings of this project.

Good Death
For those not having been exposed to death in their personal or professional lives,
conceptualizing what a death experience involves may be a mystery or constructed merely from
media portrayals. The terms ' good ' and ' death ' may therefore seem contradictory, but what
really determines whether a death is good or bad? If we could describe what an ideal death
entailed, what would that look like? Is it based on the experience of the person dying or those
witnessing the dying process and death event? Is it the physical experience of being with or
without pain and other intolerable symptoms that influences our appraisal of death? Is it based
on the age or stage of life at when death occurs? Are there universal elements of a good or bad
death? While there is an abundance of literature mentioning good or bad death, there are fewer
sources that define what these terms mean and how this then impacts health practitioners caring
for those facing death. The fact is that everyone eventually dies: this is inescapable. Where
health care practitioners can make a significant impact is in helping to facilitate a quality EOL
process for patients and families alike.

End-of-Life Care
End-of-life care is both a philosophical and clinical approach to treating, comforting, and
supporting individuals living with or dying from progressive or chronic life-limiting conditions
while being sensitive to personal, cultural and spiritual values, beliefs and practices (University
ofToronto and University of Ottawa, 2000; World Health Organization, 2012). A chronic

4

degenerative, terminal, or life-limiting condition is one that is considered progressive in nature,
either malignant or non-malignant, has no cure, and is expected to cause the death of that person
within the foreseeable future (Palliative Care Australia, 2008). Common examples within the
Canadian population include metastatic cancer; end-stage heart failure, liver, lung, or kidney
disease; and degenerative neurological conditions such as amyotrophic lateral sclerosis. EOL
care in the context of chronic degenerative disease therefore refers to the care that is provided at
a time when progressive or rapid decline toward death is physically evident (Canadian Cancer
Research Alliance, 2011 ). However, the focus of EOL care is supporting the patient in living
well during their dying phase of life. This includes supporting the best possible quality of life
(QOL) and relief of suffering. Other terms used interchangeably or in combination with EOL
care include palliative care, hospice care, and terminal care (Health Canada, 2009).
Improving EOL care in Canada has been a well-recognized need, with greater
appreciation for adequate resource allocation and patient choice (Carstairs, 2010; Heyland et al. ,
2010; Romanow, 2002). This is repeatedly correlated with an aging population of babyboomers, prolongation of life-expectancy through enhanced chronic disease management, and a
paradigm shift that regards ' comfort care only' as an appropriate therapeutic choice for those
experiencing end-stage terminal conditions (British Columbia Ministry of Health [BCMOH] ,

2010a; Carstairs; Romanow; Wilson, Truman et al. , 2009). The majority of Canadians are not
expected to die suddenly, therefore many of them may benefit from EOL care to support a
quality dying experience (Carstairs). With the understanding that death trajectories from
terminal illnesses are somewhat predictable (Carstairs), that peak health service usage occurs
within one's last 3-6 months of life (Kuropatwa, 2008), and 90 per cent of Canadians would
prefer to die at home (BCMOH, 2010a), EOL care will need additional attention from primary
care providers.

5

Canadians continue to be ill-prepared for EOL. In a recent national poll it was identified
that despite increasing numbers of resources to support advance care planning, the vast majority
of Canadians do not have a designated substitute decision maker, have not spoken to others about
their wishes for future health care treatment, or have a written plan (Canadian Hospice Palliative
Care Association, 20 12). A lack of an advance care plan may complicate EOL care decision
making for primary care practitioners.

Family Nurse Practitioners
Nurse practitioners (NPs) have been introduced into the Canadian health care system with
an aim of improving the "timely access to individualized, high-quality, cost-effective care"
(CNA, 2009, p. 1). While NPs are qualified to work as independent and autonomous
practitioners, their role is not intended to be a substitute for physicians (BCNPA, 2011 ; Weiland,
2008) but instead complement their efforts to improve the health and wellbeing of all individuals
through involvement with multidisciplinary health care teams. NPs use evidence-informed
practice as the backbone to facilitating quality health promotion; disease and injury prevention;
and management of common acute and chronic health conditions (CRNBC, 2007).
BC first began registering NPs in 2005 under BC Health Professions Act legislation
(CRNBC, 2007). This allowed CRNBC to defme and regulate the scope, competencies, limits,

and conditions ofNPs through a self-regulation model that ensures public safety (CRNBC).
Within BC there are three NP streams. Pediatric NPs provide care for infants, children, and
adolescents; adult NPs care for adolescents through older adults; and family NPs provide care for
individuals across the lifespan with the exception of women during labor and delivery (CRNBC).
Despite regulatory opportunity for pediatric, adult, and family NPs, the only stream currently
educated within BC is the family practice stream.

6
There are currently 217 NPs registered in BC, with approximately 88 % working within
the family practice stream (Roots, 2011). The vast majority are employed by regional health
authorities within primary care clinics, community based specialty service clinics and hospital
based specialty services, or clinics (Roots). While the majority ofNPs are employed within the
greater Vancouver/ Abbotsford area, 22 % have been hired within smaller BC communities to
provide rural residents with better access to primary care services (Roots). This is set to increase
with the recent provincial government commitment to an additional 190 NP positions across BC
over the next three years (Province of BC, 2011 ). With a holistic, comprehensive, and health
promoting approach to care for persons of all ages, FNPs are well suited to work within rural
communities where physician presence may be limited (BCNPA, 2011; CRNBC, 2010a).

Primary Care
Primary care is one service within the broader concept of primary health care, which
reflects the principles of access, social justice and equity, appropriate technology, multi-sectoral
collaboration, community participation, and self-determination for holistic health (University of
Saskatchewan College of Medicine, 2011 ; World Health Organization, 1978). Primary health
care is vital to improving the health of Canadians and developing a sustainable health care
system for current and future generations. Primary care, historically delivered by physicians, has
seen a shift to increasing demands for multidisciplinary management, including the integration of
FNPs. This shift, along with other sociopolitical, cultural, scientific, philosophical, and
theoretical influences has transformed practitioner-patient relationships. Traditionally curefocused paternalistic decision making is being replaced with care planning that involves the
patient in goal setting, identifying therapeutic preferences, and exploring the impact of the
patient's illness experience on all aspects of life (Health Canada, 2012a, 2009). This holistic,
comprehensive, and inclusive approach is particularly important when facilitating EOL care with

7

patients and families. FNPs are well suited for this role by effectively blending medical
therapeutics with nursing care principles.

Population Context
The aim of this project is to identify key elements necessary for a good death from
patients ' perspectives in order to inform role considerations for FNPs working in rural BC. To
.-

adequately understand the impact of this project's findings it is important to first understand the
population context in which these findings can be applied. The following discussion includes an
introduction to BC population demographics, an overview of aging, chronicity, and death

.

statistics; and reflections on the impact of rurality on care delivery in BC. It is important to note
that unless otherwise specified the subsequent statistics reflect data from the Canadian 2006
census.
British Columbia is an expansive and diverse province. The total population of BC was
recently counted at just over 4.6 million individuals, an increase of approximately 11 % from
2006 statistics (Statistics Canada, 2009a, 2011 ). While BC's population is primarily
concentrated around the major municipalities of Vancouver, Victoria, Kelowna, Abbotsford,
Kamloops, Prince George, and Nanaimo, to name a few (McGillivray, 2005), approximately 15
%of British Columbians reside in rural communities (Statistics Canada, 2009a) .

Residents of BC make up a pluralistic society; diverse in ethnicity, culture, language, and
spiritual beliefs. Approximately 25 %of BC 's population identified themselves as a visible
minority (Statistics Canada, 2009b ), and roughly 52 % identified as having one or more ethnic
origins, including British, European, Dutch, Italian, Russian, East Indian and several others
(Statistics Canada, 2009c). An additional 5 % of BC 's 2006 population identified themselves as
having Aboriginal identity (Statistics Canada, 2009d). Distribution of residence varies, with
some regions such as the North Coast (35%) and Nechako (19.5%) having significantly higher

8
concentrations of Aboriginal groups (BC Multiculturalism and Immigration Branch, 2008). It is
important to remember that even within BC's Aboriginal population there exist distinct
subgroups, each with their own cultural identity and traditions.
Beyond ethnic affiliation, 18 % of British Columbians in 2006 identified speaking one or
more languages other than English (Statistics Canada, 2009e) and 28 % identified having a nonEnglish mother tongue (Statistics Canada, 2007a). Unfortunately, 2006 statistics are not
available for religious affiliation as this data is only collected every 10 years. According to 2001
census statistics, 64 % of BC residents indicated a religious affiliation. While the majority
identified with Christianity (55%), other affiliations included Muslim, Jewish, Buddhist, Hindu,
Sikh, Eastern religions, and other faiths. Another 36 % identified no religious affiliation at all
(Statistics Canada, 2005).

Aging, Chronicity, and Death Demographics
In 2010, the median age of British Columbians was 40.8 years (Statistics Canada, 2010),
with the largest age cohort between 15-64 years (70%) and the smallest age cohorts divided
between 0-14 years and greater than or equal to 65 years (15% each) (Statistics Canada, 2011 ).
This is consistent with other reports ofBC 's aging demographic, a trend that is predicted to
continue with increasing life expectancy and death rates while birth rates remain in a decline
(O ' Neil, 2007). In fact, by 2026 it is projected that seniors will make up 20% of the BC
population (Statistics Canada, 2007b ).
With an aging demographic comes an increased frequency of chronic disease, disability,
and early death (Carstairs, 2010) . In 2010, BC saw a total of29,470 deaths, the majority being
the result of chronic or malignant disease in the older adult population (BC Vital Statistics
Agency, 2011). Historically, dying individuals were cared for at home by family and community
(Jacques & Hasselkus, 2004). Today within BC, the bulk of deaths from natural causes occurs in

9
hospital (50.6%), followed by extended care facilities (32 .5%), and then home (15 .2%) (BC Vital
Statistics Agency, 2011 ).

Impact of Rurality on Care Delivery in British Columbia
Based on 2006 census statistics, rural residents make up approximately 15% of the BC 's
population (Statistics Canada, 2009a). While it is recognized that there are differences between
the definitions of rural and remote, for the purpose of this project, rural and remote are
considered as one in terms of the impact on FNPs working in primary care (Pitblado, 2005;
Wakerman, 2004; Williams & Cutchin, 2002). Together, rural and remote are captured under the
concept of rurality.
Rurality is a geographical and socially constructed concept without a universally
accepted standardized defmition (Kulig et al., 2008; Minore, Hill, Pugliese, & Gauld, 2008;
Pitblado, 2005; Romanow, 2002; Wilson et al. , 2009a). Rurality reflects communities with
sparse population density whereby restricted infrastructure and economic resources limit the
ability to recruit and retain the desired level of services (Kulig et al. ; Minore et al. ; Romanow).
Specialized health services, economic revenue, and human resource supply are often negatively
impacted by geographic isolation (Bushy, 2002; Kulig & Williams, 2011 ; Romanow; Wilson et
al.). Further disparity results when weather conditions negatively impact transportation access to
regional centres and health economic policies favor urban acute care services (Romanow).
It is well recognized that provision of health care services to rural is more costly than to
urban communities, in part by limited economies of scale and travel time between service
delivery sites (Bushy, 2002; Minore et al. , 2008; Romanow, 2002). Resource inequalities, along
with increased prevalence of lower income families, less formal education, along with poorer
lifestyle behaviours and higher occurrence of chronic disease compared with urban counterparts
contributes to greater comparative vulnerability in terms of population health determinants for

10
those residing in rural Canada (DesMeules et al., 2006; Kulig & Williams, 2011; Romanow).
Adding to the rural service gap is the unique nature of EO L care provision and lack of associated
service resources within these rural communities (Carstairs, 2010; Romanow) .
The positive side of rurality is the tendency for small communities to be well connected
.

and during times of crisis, surround those in need with cooperative group endeavors
(Parliamentary Committee on Palliative and Compassionate Care [PCPCC] , 2011 ; Wilson et al.,
2009b). This positivity is likely influenced by the diverse and distinct culture and demographic
characteristics common in rural communities (Kulig & Williams, 2011; Romanow, 2002; Wilson
et al.). According to Wilson et al. (2009b) because formal health services may be limited in rural
communities, informal volunteer caregivers may help bridge the gap in supporting patients
wanting to remain in their home community to die.
The project synthesized good death literature to capture themes influencing good death
ideals and patient-identified essential elements for a good death. This data then informed
implications for FNP practice within rural BC. The next chapter (Chapter Two) provides an
overview of the research methods for this project, including search strategy and process of data
refmement in preparation for data analysis. Chapter Two also overviews the literature sources
chosen for review and analysis technique used to theme data. Themed literature findings and
how a rural context of care may impact achieving a good death are presented in Chapter Three,
while Chapter Four discusses role considerations for FNPs in facilitating a good death in rural
BC. The final chapter (Chapter Five) presents the project summary, potential limitations of this
research, and future considerations toward supporting good deaths for all.

:

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CHAPTER TWO

Research Methods
The purpose of this project is to examine existing published literature on what individuals
consider important for a good death. Cursory exploration revealed overwhelming results when
patient, family and practitioner perspectives were considered. It was therefore decided to narrow
the review focus to studies reflecting patients ' perspectives only. While it is recognized that
family and practitioner perspectives provide valuable insights into what is considered a good
death and necessary for quality EOL care, each also has their own individual viewpoints and
diverse roles in care which may be dissimilar from the priorities and concerns of those facing
death (Hauser et al., 2006; Hendrickson & McCorkle, 2008; Heyland et al., 2006; Masson, 2002;
Steinhauser et al. , 2000a). Studies using general population surveys were also included with the
belief that results might reinforce the insights drawn from patient studies.
Good death literature and EOL programs historically focused on individuals dying from
malignancy, partly because illness symptoms and life trajectories with cancer are more
predictable (Carstairs, 201 0). With advances in medical technology and pharmaceuticals,
conditions that would once quickly end the individual 's life such as cardiovascular, pulmonary,
and cerebrovascular disease, are now considered chronic conditions that lead to progressive
decline in health and physical function (Carstairs). Caring for those facing death is now more
broadly focused to include those experiencing chronic-progressive and life-limiting conditions.
This broader focus on death, inclusive of chronic and cancer-related disease, was another lens
through which the literature searches and review was completed.
As described in Chapter One, BC is a province with a diverse population and as such it is
important to explore good death literature through a lens of diversity and cultural inclusiveness.
While English language publication was an inclusion criterion, literature searches were not

12
limited to Eurocentric North American Christian perspectives but instead sought out to capture
articles from diverse countries, cultures, spiritual persuasions, life stages, and genders. This
diversity is captured within Appendix A (Table of Evidence) which outlines the fmallist of
articles retrieved for review.

Search Strategy
The overall search strategy and refinement of data sources for critical appraisal entailed
three stages and therefore will be outlined according to each stage as reflected in Figure 1.

Electronic Databases
(Academic Search Prerniei, CINAHL,
Cochrane Collaboration, H
~
NursingIAca dernic E-dition,
Medline, and

Web
Search
(Google Scholar)

®U'>E)

\

Serendipitous
DiscOVfiY
2 potential additional
articles

Stage-1: Results from each source screenedforpotentialrele,•ancy
mthin title, key'\\'Oids, and abstract based on inclusion and
exclusion criteria
165 potenW.l articles identified
F\JII text print copies retrieved for all potential publications

Scan ofRelevart Article
Re:ferencu for Mqnjsm&L

Stage 2 : Potentially relevant publications re-screened for rele,·ancy

~

Total of 52 articles identified

4 potential additional articles

/

\.,

/

Manual Search
~ E.OL and
Primary Care Journals
-Social Science: Medicine
- JoumalofRura!Health
- CanacianFarrily Physician
- The Nurse Practitioner
I potential additional article

Stage 3 : Each article re-readin detail forrelevancy andapprQPriateness based
on patient-perceiv edcomponentsof good death

/

Total of 35 artidu included in !"mal renew

Figure 1: Overall Search Strategy

Stage One: Gathering Potential Relevant Resources
Credible integrative literature reviews need to be comprehensive (Bryman, 2008;
Torraco, 2005; Whittemore & Knafl, 2005); therefore, the first stage of the search strategy

13
consisted of gathering all potentially relevant electronic and print resources. To accomplish this,
six electronic databases relevant to nursing, medicine, and allied health (CINAHL, Medline,
Academic Search Premier, PsyciNFO, HealthSource: Nursing/Academic Editions, and Cochrane
Collaboration) were searched with a limit to articles written in English and published between
January 2000 and December 2011. To help keep the literature search focused and relevant the
following terms were used in combination: "good death", "terminal illness", "terminal care",
end-of-life, death, "death and dying", wishes, and preferences. While euthanasia and assisted
suicide may reflect a good death for some, this practice is not legally sanctioned in BC and was
therefore excluded as part of this review. Go ogle Scholar web search engine was also accessed
to seek potentially relevant articles using the same inclusion and exclusion criteria as used during
database searches.
Beyea and Nicoll (1998), along with Wittemore and Knafl (2005) recommend not
limiting preliminary searches only to research articles as "clinical writings, reviews, and other
documents, such as editorials and letters to the editor. .. can be helpful in identifying and
organizing your topic around key issues that need to be addressed" (Beyea & Nicoll, p. 879). As
such, a variety of article types were included during the first phase of resource retrieval. During
stage one database searches, dissertations and theses were also included for review. Appendix B
(Stage One Search Results) outlines the combined search terms and document results for stage
one of the search strategy. Among these articles was a representation of varied methodology,
location of study, and population characteristics including diversity of health status and
prognostic stage, ethnicity, cultural affiliation, gender, age, sociocultural, geographic, and
professional worldviews. Recognizing the potential for publication bias from using Englishbased sources, a demographically diverse sample was thought to help prevent Eurocentric and
Western biomedical biasing of fmdings, conclusions, and recommendations. Stage one resulted

14

in a total of 165 potential articles for review based on previously identified search terms within
title, key words, and/or abstracts. Full text prints were obtained for all potential publications.
When publications were not available online or in print at Vancouver Island University or the
University ofNorthem British Columbia, copies were ordered using interlibrary loan.

Stage Two: Re-screening Potential Relevant Resources
Stage two of the search strategy involved re-screening initially sanctioned articles for
potential relevancy based on inclusion and exclusion criteria. As discussed in the introductory
section of this chapter, articles solely reflecting the views of family or health care practitioners
were excluded from review while those that reflecting multiple viewpoints were included with
the idea these perspectives would be dissected during thematic review. Due to the number and
quality of primary and secondary research articles located during stage one database search,
editorials, commentaries, book reviews and conference proceeding abstracts were excluded
during the second stage of potential article appraisal. Several of these excluded articles, while
not appropriate for this integrative review, were useful as background information in providing
greater understanding of the topic.
To confirm saturation of the electronic literature search, a bibliographic scan of relevant
publications and a manual search of key EOL and primary care journals was completed using the
same search terms and inclusion criteria in stage one and is captured in Appendix C (Manual
Journal Search Results) . This process resulted in the addition of five potential articles for review.
During background exploration ofwebsites related to EOL care, an additional two articles were
serendipitously identified for potential inclusion. Overall, stage two narrowed the articles for
review down to ann of 52.

15

Stage Three: Reviewing for Relevancy and Appropriateness
In keeping with the integrative review framework recommended by Whittemore and

Knafl (2005), stage three of the search strategy involved re-examining each resource for
relevancy and appropriateness related to patient-perceived characteristics and components of a
good death. To support research transparency, integrity, and future review, a literature table of
evidence (Appendix A) was created to collate standard and comparable information from each
resource. Of the original 172 potential publications identified in stages one and two, 35 articles
were selected for review and thematic analysis. Several excluded articles, while not specific to
the main topic, were used to better understand the breadth ofEOL literature and as supporting
documents for discussion of implications to FNP practice in rural BC.

Literature Reviewed
The review sample consisted of studies from the United States of America (14), Canada
(5), the United Kingdom (4), Japan (3), Italy (2), the Netherlands (2), China (2), Australia (2),
and Saudi Arabia ( 1). Most studies focused on patients with advanced disease or terminal illness
(15). Others focused on age cohorts (7), sociocultural or religious affiliation (1 0), geographic
residence (6), or general public perceptions (4). Six articles were literature reviews, nine studies
were strictly quantitative, seventeen studies were qualitative in nature, and three studies were of
mixed-method. No randomized controlled studies or cohort studies were identified for inclusion.
Studies are excerpted in a Table of Evidence (Appendix A) .
Characteristic of qualitative studies, patient sample size ranged from 3 to 180 participants
and typically employed interviews and focus group discussions. Quantitative studies contained
between 100 participants (cross-sectional and convenience samples) to 3061 participants (general
public questionnaire). Literature reviews typically contained between 21 and 44literature

16
sources for analysis; within recognizable standards (Khan, Kunz, Kleijnen, & Antes, 2003).
Further breakdown of study characteristics are included throughout the discussion of themed data
within Chapter Three.

Analysis Technique
Methodical and thorough analysis is integral to scientific integrity and credibility of
integrative reviews (Bryman, 2008; Torraco, 2005; Whittemore & Knafl, 2005). A meta-analysis
was not possible as many reports were qualitative in nature. Instead, using a dimensional
analysis technique, each report was appraised on its own and in light of the complete body of
developing evidence (Hendrickson & McCorkle, 2008; Kools, McCarthy, Durham, & Robrecht,
1996; Whittemore & Knafl). This approach to comparing data from each study and across
studies offered the opportunity to identify and synthesize main themes and essential attributes
characterizing a good death as they emerged (Trochim, 2006; Torraco; Whittemore & Knafl).
Themed literature findings are presented in the next chapter (Chapter Three) according to
identified contributors that assist in shaping one 's vision of a good death, along with
corresponding domains and associated attributes described as important for achieving a good
death. The impact that a rural context of care might have on realizing a good death is also
explored.

17
CHAPTER THREE

Literature Findings
The term good death is commonly cited in EOL literature; however there remains no
consensus definition or formula for approaching the care of individuals facing death. The current
chapter provides a synthesis of the analyzed good death literature reviewed for this project by
answering the following questions: 1) What influences or shapes our good death ideal, 2) What
do patients identify as necessary for achieving a good death, and 3) How might a rural context of
care impact a good death? It is from understanding what contributes to one 's good death ideals
by which practitioners can then identify how to best support those facing EOL.

What Influences or Shapes our Good Death Ideal?
Throughout the literature, several frameworks were used when discussing good death
values and preferences; some authors arranged fmdings using a model of holistic care while
others focused on particular care elements voiced by research participants. Despite the diversity
of frameworks and thematic arrangements, what consistently appeared across participant groups
and studies was that one 's good death ideals are unique to each individual, subjective in nature,
and shaped by a multitude of interconnected sociocultural and personal factors .
Likewise, our expectations for EOL are values-based and modifiable over time. They are
dependent on our personal experience with illness and the health care system, as well as changes
in health status and life context (Borreani & Miccinesi, 2008; Goldsteen et al. , 2006; Hattori,
McCubbin, & Ishida, 2006; Heyland et al. , 2006; Hughes, Schumacher, Jacobs-Lawson, &
Arnold, 2008; Jacques & Hasselkus, 2004; Kehl, 2006; Kelly & Minty, 2007; Masson, 2002;
Miyashita, Sanjo, Morita, Hirai, & Uchitomi, 2007; Pierson, Curtis, & Patrick, 2002; Steinhauser
et al. , 2000b; Tong et al. , 2003 ; Veillette, Fillion, Wilson, Thomas, & Dumont, 2010; Vig,
Davenport, & Pearlman, 2002; Wilson et al. , 2009a). Due to globalization and the diversity

18

associated with multicultural societies, the concept of a good death and the factors influencing
individual wishes related to a good death experience are becoming more complex and variable
(Hattori et al.).
Variability in good death ideals was reinforced in Vig et al. 's (2002) study of geriatric
outpatients with heart disease and cancer in which the depictions of a good death by some
participants were reflected as a bad death by others. For example, having family members

.

present at EOL was seen as contributing to both a good and bad death. Those seeing family
presence as a positive did so because of the love and support family provide. Those seeing
family presence as a negative did so because they perceived the request for family presence to be
a burden on their family members. Additionally, Masson (2002), in his study of hospice day
patients and relatives of previous hospice patients, noted the possibility for conflicting ideals and
tension between what patients ' identify as EOL preferences, and what family members would
prefer during EOL with their loved one. Two clear examples involved the timing of one 's death
(sudden versus extended) and the request for specific individuals to be present or not present at
EOL. Each of these aforementioned examples reinforces the diversity of good death preferences
which are dependent on one's values, experience, and personal context at EOL. Interconnected
influences contributing to an individual 's good death ideal include: I) one's philosophical views
on life and death; 2) one's belief in individualism versus collectivism; and 3) one 's personal
context. Each of these influences will be further described below.
Philosophical Views on Life and Death
A clear theme through good death literature was that each individual's philosophical
approach to life, illness, and death inherently influences the preferences for when, how, and
where an individual wishes to die. One 's belief or disbelief in an afterlife following death
therefore seems to influence an individual 's view of death as a process versus death as a product

.

19
or event. Some view death as a process between earthly being and eternal/spiritual afterlife,
while others view death as an event finalizing one's life cycle (Toscani, Borreani, Boeri, &
Miccinesi, 2003). Both views deeply impact one 's anticipated EOL experience and the resultant
expectations for EOL care. In their study of Christian believers and non-believers in Italy,
Toscani et al. (2003) found that an individual 's beliefs influenced his/her preference for control
in the timing of death, desire for awareness during the moments before death, and aesthetics of
physical death. An example included how one 's spiritual conviction was seen to help some find
meaning in life and suffering while providing hope during the dying process. For others, a
conscious awareness of how life is ending was important for coping with death and closure of
one 's life lived.
Likewise, Bullock, McGraw, Blank, and Bradley (2005) found that older African
American adults with strong Christian beliefs viewed death as a transition which lessened their
fears and provided hope for them in the dying process. Hattori et al. (2006), in their concept
analysis of a good Japanese death noted death as a process connecting past, present and future
but within a Japanese cohort. Likewise, Mjelde-Mossey and Chan (2007) found in their survey
research of Hong Kong citizens the belief that current life experiences and death experience
influence one 's afterlife and ancestral linkage to future generations. This translated into high
regard for death ceremonies and rituals.
Several authors address philosophical views about death in regards to beliefs and
attitudes surrounding the timing of death. Views on timing of death and beliefs around
naturalization versus medicalization are strong influencers for acceptance of impending death as
well as medical therapeutics expected during EOL. In her literature review on the concept of a
good death, Kehl (2006) discusses the general view that death involving an aged person with
terminal illness is seen as more natural than the impending death of a child. Masson (2002), in

20
his qualitative study of hospice patients, adds that death can in fact be a welcome release from
prolonged hardships, declining health and function, or poor symptom control. Similarly, in their
study of the general population in Japan, Miyashita et al. (2007) identify less attachment to
duration of living during the dying process and greater focus on the perception of a good fight
against disease along with physical and psychological comfort.
Linked to timing of death is the fear of inappropriate prolongation of life and the
competing philosophies of medicalization versus naturalization of life and death. Several studies
with diverse participant demographics revealed a natural acceptance of death and preference for
comfort interventions versus life-prolonging medicalization when a cure was not expected for a
disease or when participants perceived that quality of life would be negatively affected (Heyland
et al., 2006; Jacques & Hasselkus, 2004; Kelly & Minty, 2007; Masson, 2002; Matsui & Braun
2009; Pierson et al., 2002; Smith-Stoner, 2007; Tayeb, Al-Zamel, Fareed, & Abouellail, 2010;
Tong et al., 2003; Wilson et al., 2009b). Other studies concluded a preference for continuation of
life-sustaining interventions, and reflected an active fighting spirit, effective coping mechanisms,
and not giving up hope despite a grim prognosis (Bullock et al., 2005; Hirai, Miyashita, Morita,
Sanjo, & Uchitomi, 2006). In their public survey of Chinese citizens, Mjelde-Mossey and Chan
(2007) found that while a fatalistic life cycle belief permeated their results, men and women

differed slightly in their preference for life extension. Whereas men preferred life-sustaining
treatment despite the increased pain this might cause, women preferred pain relief over life
extension. Whether this difference is strictly a sociocultural influence is not clear, given that
other researchers also found similar findings but with different populations. For instance, despite
differing spiritual belief systems among elder Japanese Americans in Hawaii, Matsui and Braun
(2009) noted a fear of death yet a preference for not extending the dying process. Similarly, in
studying EOL issues among Canadian Aboriginals Kelly and Minty (2007) found competing

21
views on treatment support. Some participants preferred an exclusive pursuit for cure while
others favoured maintenance of interventions until their death, a time they believed to be
externally controlled by their creator. Despite these differences, a consistent message across
studies was that attitudes toward death influence good death ideals and priorities during the
dying experience.

Individualism versus Collectivism
An interesting dualism discussed in several cross-cultural studies was the influence that
sociocultural views of individualism versus collectivism have on the information that is
conveyed to individuals with terminal status, individuals responsible for making medical
decisions and the focus of medical interventions that are agreed upon. Predominant Western
European and North American views within good death literature tend to favour individualism
whereby personal control, self-determination, autonomy, and independence are highly valued in
health care decision making at one's EOL (Gott, Small, Barnes, Payne, & Seamark, 2008;
Jacques & Hasselkus, 2004; Tang, 2003 ; Terry, Olson, Wilss, & Boulton-Lewis, 2006).
Conversely, many non-Caucasian ethnic groups place higher value on collectivism and socially
derived normative expectations where self is defined through interconnected personal relations;
thereby medical decisions reflect what is best for the group rather than the individual (Borreani
& Miccinesi, 2008 ; Goldsteen et al. , 2006; Hattori et al. , 2006; Hirai et al. , 2006; Leung, Liu,

Cheng, Chiu, & Chen, 2009; Miyashita et al. , 2007; Mjelde-Mossey & Chan, 2007; Tong et al. ,
2003). For instance, while Westerners may negatively view collectivism with a perceived loss of
control and self-determination, personal control may be less an issue for traditional Japanese
patients who value cohesiveness; instead placing high value on family members' opinions and
preferences regarding medical decision making (Hirai et al.; Matsui & Braun, 2009). Bullock et
al. (2005) also found that historically, African Americans have valued collectivism and extended

22
family involvement, adding a sense of trust and security felt by older African Americans in
knowing their final wishes would be respected when family took on the care coordinator role.
Several research studies also highlighted the inclusion of family and/or community elders within
discussion ofEOL expectations and preferences (Goldsteen et al. , 2006; Hendrickson &
McCorkle, 2008; Hirai et al. , 2006; Kelly & Minty, 2007; Matsui & Braun, 2009).
Hattori et al. (2006) bring attention to anticipated shifting attitudes as globalization
exposes more traditional collectivism-focused societies to contemporary Western beliefs that
favor individualism and autonomy (Hattori et al. ). As internet access to global perspectives
expands and immigration continues to diversify Canadian demographics, health practitioners will
increasingly need to explore patients ' beliefs and preferences around EOL decision making
control.
Personal Context
Personal context reflects one 's unique attributes, relationships, conditions, experiences,
and situatedness (SAFE Aging, 2003 ; Vining Radomski, 2007). Good death literature speaks to
personal context in relation to differences of 1) sociocultural influences, 2) gender, 3)
geographical residence, and 4) age and chronicity.
Sociocultural influences. Connectedness to others is an inherent human quality that can

significantly influence one 's worldviews and how the individual experiences events within their
life (Tracey, 2009). Sociocultural connectedness reflects more than ethnicity, race, or language
affiliation. It includes historical understandings; political, social, and religious affiliations; one's
life experiences and relationships; along with the meaning and importance individuals ' assign to
these attributes (Hattori et al. , 2006; Wilson et al. , 2009a; Veillette et al. , 201 0). How a person
views social connectedness and culture therefore influences how sensitive he/she is to these
influences on others ' EOL experiences and preferences when supporting a good death.

23
The literature provides numerous references to culturally derived preferences and the
importance of sensitivity to these needs (Borreani & Miccinesi, 2008; Bullock et al. , 2005;
Hattori et al., 2006; Kelly & Minty, 2007; Tayeb et al. , 2010; Tong et al. , 2003). While many
studies referred to cultural groups based on race, ethnicity, or spiritual affiliation (Hirai et al.,
2006; Kelly & Minty; Leung et al., 2009; Matsui & Braun, 2009; Miyashita et al. , 2007; Smith-

(

;

;

·

Stoner, 2007; Toscani et al. , 2003), several also presented culture from the experiential paradigm
of age, diagnosis, or place of residence (Gott et al., 2008; Hendrickson & McCorkle, 2008; Hirai
et al. 2006; Hughes et al. , 2008; McGrath, 2007; Mjelde-Mossey & Chan, 2007; Pierson et al. ,
2002; Tang, 2003; Thomas, Morris, & Clark, 2004; Veillette et al., 2010; Vig et al. , 2002; Vig &
Pearlman, 2004; Wilson et al. , 2009a). Hattori et al. (2006) added the dimension of sociocultural
norms to highlight the need for considering how one 's cultural, historical , political, and religious
influences shape good death ideals and subsequent expectations for EOL care. Despite
commonalities identified within and between cultural groups, it is important to remember that
these studies only provide a snapshot of particular cultures within specified contexts and
therefore should not be interpreted as indicative of generalized cultural beliefs.
A clear theme concerning cultural sensitivity and good death emphasized the need for
health professionals to be respectful and open to diverse culturally-based preferences for
environment, bedside presence, and terminal care activities. Bullock et al. (2005) identified
African American beliefs around terminal nutrition and hydration, along with a preference for
extended family member presence and inclusion in the dying person 's care. McGrath (2007)
similarly highlighted the need for health practitioners to be cognizant of traditional Indigenous
people 's strong spiritual connection with traditional land and how this influences desired location
for death. He also spoke about the role community plays in one 's family network for Indigenous
peoples.

24
Changing immigration patterns within industrialized societies, along with blending of
families through inter-racial marriage and post-divorce re-marriage are also impacting the
diverse family relationships that health practitioners are engaged with in expanding North
American multi-ethnic society (Jordan, 2012). In their study of community-dwelling minority
and non-minority perspectives of a good death in the state of Connecticut, Tong et al. (2003)
recognized similarities and differences for good death preferences across multiethnic groups.
Similarities across minority and non-minority groups included location and environment of
dying, presence of others, fear of burdening family, and communication styles. Minority groups
identified the importance of cultural sensitivity in defining a good death and respecting cultural
traditions, specifically related to food choices, involvement of extended family in care of dying,
and rules around care for the body. In their study of older African American facing EO L
decisions, Bullock et al. (2005) spoke to a fear of racial discrimination related to early treatment
withdrawal, ignoring patient-identified requests, or inadequate pain control measures. These
fears subsequently influenced EOL care behaviours and decision making. While not all cultural
affiliations were identified within the studies reviewed, and assuming there is a continuum of
connectedness to traditional culture-based good death preferences, a cultural needs assessment
may help identify specific EOL care considerations. It is also important to remember that while
core values may be shared within sociocultural worldviews, good death ideals also reflect other
individualized aspects of one's personal context and past experiences (Gott et al. , 2008; Hattori
et al. , 2006; Pierson et al. , 2002; Vig & Pearlman, 2004). The diversity of sociocultural
affiliation discussed within the literature reinforces the need for health care practitioners to
explore each patient's definition of culture, social connectedness, and associated expectations or
preferences that need particular consideration when planning EOL care.

25
Gender. The vast majority of studies (n=23) identified participant inclusion of both

males and females, with only one study specifically identifying gender differences related to
good death preferences (Mjelde-Mossey & Chan, 2007). Among literature sources reviewed,
there were minimal gender differences related to EOL values and preferences. Where differences
did appear, they were related to gendered roles, opportunities, and available choices based on
sociocultural normative expectations rather than specific value differences between genders.
Sociocultural gender values may play a role in EOL opportunities and choices but this was not
clearly identified within the literature reviewed. In fact, gendered preferences varied only
slightly regarding life-sustaining treatment. There were no studies that focused specifically on
females' perspectives of good death and only one study, by Vig and Pearlman (2004), that
focused on terminally ill male participants' views of good and bad dying. Consistent with good
death preferences among the numerous gender inclusive studies, male participants in Vig and
Pearlman's study preferred to die peacefully without pain and suffering, quickly or in their sleep,
without knowledge of impending death, and having made peace with God. It is uncertain if a
similar study of female patients with terminal disease would also reflect these preferences for a
good death.
Geographical residence. Where one chooses to live and die can act as a social

determinant of health by contributing to health inequity through resource availability and
accessibility, particularly when rural residence results in isolation from health and social
resources (Brennan Ramirez, Baker, & Metzler, 2008; Romanow, 2002). Several authors
identified the unique rural challenges (e.g. geographic isolation, health practitioner turnover,
financial barriers, and lack of inpatient facilities) influencing the availability and accessibility to
specialized EOL services necessary to support a rural good death. (Kelly & Minty, 2007;
Veillette et al., 201 0; Wilson et al., 2009b ). Wilson et al. (2009a) and Veillette et al. (20 10), in

26
discussing their ethnographic studies of a good rural death in the Canadian provinces of Alberta
and Quebec, identified a strong preference for rural residents to remain in their home community
to die. The authors also identified a rural sub-culture of solidarity and mutual support that
stemmed from interdependence and inherent expectations of neighbourly support during difficult
times which helped residents overcome geographic barriers to service access. This often
translated into a deep commitment to ensuring dying community members were able to remain in
close proximity to family, friends, and a place they feel secure. So while rurality can negatively
influence formal EOL care resource availability, there may be informal resources that can be
tapped to support a good death for those wishing to remain in their rural home community to die.
Age and chronicity. There are two major groups facing EOL experience in North
America: the aged with progressive co-morbid conditions and those with terminal, life-limiting
illnesses (Vig et al. , 2002). While about half of studies (n= 18) identified adults as the population
of focus , five studies specifically targeted older adults, one included children and adults, one
focused exclusively on children, and seven did not specify population age at all. There were no
age-specific good death preferences identified within the literature. This seems to reinforce the
complexity of interrelated factors that contribute to the individuality of good death ideals
regardless of age, gender, or ethnic background.
Interestingly, the findings from the sole literature review on the concept of a good death
in children (with cancer) noted that children with life-limiting illness often have an
understanding of death far beyond their years, and like those of other age groups, children also
experience the stages of grief and loss during preparation for death (Hendrickson & McCorkle,
2008). Consistent with perspectives of adults and older adults, Hendrickson and McCorkle
concluded that each child is unique in their needs for a good death and should therefore be
offered developmentally appropriate opportunities to participate in good death planning.

27
Although not specifically noted in the literature, one might also presume that developmentally
appropriate engagement would be prudent with other age cohorts given the likelihood of shared
beliefs, memories, and experiences within generational subcultures such as baby boomers,
generations X, Y, and Z (Markert, 2004; Moss, 2010).
While an aging population is commonly cited as a major factor contributing to the
increasing death rates in Canada, life-limiting chronic illness and comorbid disease also have a
role to play (Carstairs, 201 0). While the bulk of good death studies focused primarily on
populations with unspecified or mixed diagnoses of terminal or life-limiting chronic illness
(n= 10), other studies focused specifically on individuals with cancer (n= 6) or non-cancer (n=2)
diagnoses. As the population continues to age and greater numbers of older adults die from
chronic progressive disease (Carstairs), it will be important for health care practitioners to
recognize how this older age cohort, along with how their particular sociocultural and life
experiences with death and dying, will impact attitudes and preferences for EOL care.
Notwithstanding age demographics or condition the patient is dying from, a clear theme
across studies was that within the last phase of life, a number of holistic care resources are often
needed as the one 's physical body is debilitated, caregiver resources become depleted, and
everyone processes the terminal nature of the patient's condition. The health professional 's
challenge thereby becomes provision of holistic care and resources that reflect the individual 's
good death ideals.

What do Patients Identify as Necessary for Achieving a Good Death?
This section presents a discussion on the fundamental components of a good death as
derived from thematic analysis of the literature, resulting in four overarching domains, each
having their own defining attributes. Specific domains include: 1) preparation, 2) sources of
support, 3) communication, and 4) quality of life issues. It is important to remember that

28
individual attributes do not stand alone but instead are interconnected and overlapping within
and across domains. While there are similarities that cross cultural, spiritual, and geographical
boundaries, these attributes are also heavily influenced by personal and sociocultural contexts.
Preparation
The first domain necessary for achieving a good death is the opportunity to prepare for
one's own demise; a major activity of those approaching EOL (DeJong & Clarke, 2009; Jacques
& Hasselkus, 2004). Preparing for one 's death is not a discrete event but a process that includes

several individualized components. Death preparation involves both a solitary reflective process
of life review and meaning making, along with time to engage with others in the form of life
closure, reconciliation, and generativity activities (Byock, 1996). According to several authors
who have written about good death, EOL preparation begins with a cognitive awareness and
acceptance that one is going to die (Goldsteen et al. , 2006; Gott et al. , 2008; Hattori et al. , 2006;
Jacques & Hasselkus; Kehl, 2006; Pierson et al. , 2002; Steinhauser et al. , 2000a). Once the
individual acknowledges terminality he/she can move on to reflective and interactive activities of
closure and generativity and/or decisions related to the logistics of dying and death.
Closure and generativity activities. Although the process of closure and generativity
was defmed differently across studies, several authors identified the need for dying individuals to
view their life as full and complete, without regrets, guilt, or worry (DeJong & Clarke, 2009;
Hattori et al. , 2006; Heyland et al. , 2006; Leung et al., 2009; Masson, 2002; Miyashita et al.,
2007; Steinhauser et al. , 2000a). In fact, this theme crossed generational and culture boundaries.
Goldsteen et al. (2006), Jacques and Hasselkus (2004), and Steinhauser (2000a) describe the
importance of reminiscing life experiences and accomplishments as part of reconciling emotions
of fear and anxiety around death with affirmation of past life, goals reached, and providing a
sense ofmeaning to one 's life. Hendrickson and McCorkle (2008) recommended the use of a

29
memory box to identifying what is meaningful and serve as legacy for family after one dies.
Other authors also identified the importance of the dying individual feeling he/she will be
remembered after death and the opportunity to reciprocate through the sharing of time, gifts or
knowledge (Hattori et al. , 2006; Jacques & Hasselkus, 2004; Kehl, 2006; Steinhauser et al. ,
2000a, 2000b ). McGrath (2007) identified leaving a legacy as particularly important for
Indigenous Australians, illustrated by passing on sacred information to descendants, a component
directly tied to the preference for dying in one 's hereditary homeland surrounded by family.
Resolving conflicts, seeking forgiveness, and reconciliation were additional closure
activities identified as important to a good death that crossed generations and cultures (Jacques &
Hasselkus, 2004; Kehl, 2006; Pierson et al., 2002; Steinhauser et al. , 2000b ). In their
ethnography of those at an urban residential hospice, Jacques and Hasselkus (2004) relate
reconciliation with the opportunity to make peace with self, others, and God. Mjelde-Mossey
and Chan (2007), in their general population study added that forgiveness is significant because
it is thought to be important for a peaceful death.
Linked to the concept of reconciliation and completion of final tasks is the opportunity to
spend time with important people and say good-bye. While this was a consistent theme across
several studies, saying good-bye took on many forms including email, cards, letters, phone calls,
personal interactions, and special gatherings (Jacques & Hasselkus, 2004; Kehl, 2006; Pierson et
al., 2002; Rietjens, van der Heide, Onwuteaka-Philipsen, van der Maas, & van der Wal, 2006;
Steinhauser et al. , 2000a; Tayeb et al. , 2010). From a generational perspective, DeJong and
Clarke (2009) noted that the older adults with terminal illness in their study related a good death
with opportunities to have an open dialogue about dying with loved ones, along with an
opportunity to say good-bye. Jacques and Hasselkus (2004) and Pierson et al. (2002) added the
inclusion of pets as significant visitors within their American based research studies. This may

30
simply reflect a Western sociocultural perspective but may also be relevant in other cultures as
well .

Logistical decisions and arrangements. Once an individual has come to terms with
their forthcoming death they may then begin to make decisions about practical matters related to
closure and generativity. Often this included finalizing funeral arrangements, obituary writing,
arranging support for bereaved family members, bequeathing of one 's estate, and attending to
financial and legal affairs surrounding death (Goldsteen et al. , 2006; Gott et al. , 2008; Hattori et
al. , 2006; Jacques & Hasselkus, 2004; Kehl, 2006; Pierson et al. , 2002; Steinhauser et al. ,
2000a). In particular, Bullock et al. (2005), Kehl (2006), and Rietjens et al. (2006) highlighted
the concern for grief and distress that medical decision making, fmancial costs, and caregiving
responsibilities added to the dying individual 's family. Many of these EOL decisions relate to a
common fear of becoming a burden on family and ensuring loved ones will be provided for
following the individual 's death (Bullock et al. , 2005 ; Hattori et al. , 2006; Kehl; Miyashita et al.,
2007; Steinhauser et al. ; Thomas et al. , 2004; Tong et al. , 2003).
Similar to a Western desire for family security following death, Tayeb et al. (20 10) also
noted a consistent Muslim desire for economic and social security for family members left
behind. Other non-Western cultural perspectives from Hattori et al. (2006), Mjelde-Mossey and
Chan (2007), Tayeb et al. (2010), and Toscani et al. (2003) commented on the role of family in
planning and executing sociocultural and spiritual practices expected during and after death.
Mjelde-Mossey and Chan (2007) specifically addressed the traditional Chinese perspective of
respecting cultural ceremonies, rituals, superstitions, rules, and dying tasks to support a smooth
and peaceful transition to afterlife.
Linked to a need for control over self and circumstance, several studies noted a
preference for control over death location, whether that be home, hospice, hospital, residential

31
care facility, or other setting (DeJong & Clarke, 2009; Gott et al., 2008; Kehl, 2006; Tayeb et al.,
2010). While there has been a small decline in the number of hospital-based deaths within
Canada and abroad, it remains a common experience despite the preferred location of dying and
death being in one's home environment with family (Hattori et al., 2006; Heyland et al., 2006;
Kelly & Minty, 2007; Matsui & Braun, 2009; Rietjens et al., 2006; Tang, 2003; Tong et al.,
2003). For many, a hospital death was likened with sterility, lacking warmth or safety, removal
of dignity, and a place associated with alienation (Masson, 2002; McGrath, 2007; Pierson et al.,
2002; Tong et al.). For others, the hospital or other non-home environment provided security in
symptom control while limiting any perceived burden on family (Gott et al.; Masson; Pierson et
al.; Steinhauser et al., 2000a; Tang; Thomas et al., 2004; Toscani et al., 2003; Vig & Pearlman,
2004). An important component for those dying away for a home environment was a longstanding trusting relationship with consistent care providers (Steinhauser et al.; Tang; Toscani et
al.). To compensate for deviation from their idealized home death, many patients would make
the new location as home-like as possible (Hirai et al., 2006; Masson; Miyashita et al., 2007).
Cultural influences also contribute heavily to preferred location of death. Just as no two
individuals or groups are completely alike, neither are the specific expectations for dying and
death. Therefore it is important to separate the cultural themes identified within good death
literature from what individuals may specifically interpret as important for their own dying and
death experience. However, good death literature did identify themes within and across cultural
groups that are important to consider when conceptualizing a good death. In their literature
review to describe the meaning of a good death in the Japanese community, Hattori et al. (2006)
noted that traditional Japanese cultural expectations often included the responsibility of family to
prepare a place for the ill family member to die, including a traditional tatarni mat (death mat) for
a home death. In their study to identify and describe components of the Muslim good death

32
perspective among multi-national Muslims in Saudi Arabia, Tayeb et al. (2010) found that when
possible, relocation to a holy place such as Madinah, Makkah (the holiest places for Muslims), or
a local mosque for those living away from these holy places, was seen as supportive for a quality
death. Similarly McGrath's (2007) research found that northern Australian Indigenous peoples,
especially elders, saw dying in one's homeland surrounded by family was not only a place of
comfort and familiarity but helped ensure their spirit was able to return to the land for
transcendent connection with future generations.
While the majority of research participants articulated a particular location for death,
others were more abstract in reflecting location as a place that provided a sense of safety,
security, comfort, and familiarity of important people, cultural practices, religious beliefs, and
surroundings (Hirai et al. , 2006; Miyashita et al., 2007; Wilson et al., 2009a). This reinforces the
idea that individual studies only provide contextualized views but should not be seen as
providing complete understanding of cultural beliefs and preferences across contexts. Despite
mixed opinion on best location of death, preference factors commonly included familiarity,
privacy, autonomy, companionship, and environmental comfort (Miyashita et al. ; Steinhauser et
al., 2000a; Tang, 2003 ; Toscani et al. , 2003). EOL experience is also heavily impacted by the
supportive relationships each patient experiences.
Sources of Support

The second domain identified as necessary for achieving a good death focuses on the
dying individual 's sources of support. The importance of family relationships and presence
during EOL was a theme cited across the majority of literature sources and likely reflects the
centrality of family for many cultural groups (Hattori et al. , 2006; Hirai et al. , 2006; Kelly &
Minty, 2007; Miyashita et al. , 2007). What differed among studies was the definition of family.
The North American health care system often narrowly defmes family (Bullock et al., 2005) but

33
many sociocultural and religious groups see extended family relations, community members,
informal helpers, and pets as critical to the caring process (Jacques & Hasselkus, 2004; Kelly &
Minty; Pierson et al, 2002).
Although Vig and Pearlman (2004) found mixed opinions on the presence of family
during one's dying phase, several other authors noted a desire for support, compassion, comfort,
and sympathetic human contact from friends and family (Bullock et al., 2005; Hattori et al.,
2006; Kehl, 2006; Pierson et al. , 2002; Tong et al. , 2003). In some instances support referred to
the caregiving role, while other times the focus was simply being present; a time to informally
visit or sit with the dying individual as they rested (Bullock et al. ; Jacques & Hasselkus 2004).

In studying the views of older adults, both Bullock et al. (2005) and Steinhuser et al. (2000a)
noted physical touch, interaction, and presencing- focused attention and receptivity (Zerwekh,
1997) - helped to reinforce the humanness of the dying experience rather than purely focusing on
the physical dying shell. Participants described a desire for being treated genuinely, with
empathy, and inclusivity (Bullock et al.). This humanness perspective is consistent with views of
positivity, maintaining hope, normalization, and focusing on living despite a terminal status
(Goldsteen et al. , 2006; Kehl; Miyashita et al., 2007; Steinhauser et al.). Hirai et al. (2006) also
found maintaining hope and a fighting spirit to be effective coping strategies that are positively
regarded within Japanese culture. This is possibly due to the culture 's high regard for pride,
dignity, collectivism, and reincarnation. This outlook may partially explain why many Japanese
see maintaining treatment through to death as part of a good fight.
Health care professionals were another identified source of support but with particular
restrictions. Patients voiced expectations for health professionals to be nonjudgmental,
collaborative, respectful, trusting, reliable, advocative, confident, and genuine (Bullock et al. ,
2005; Hirai et al., 2006; Kehl, 2006; Miyashita et al., 2007; Pierson et al. , 2002; Steinhauser et

34
al. , 2000a; Thomas et al., 2004; Tong et al., 2003). Steinhauser et al. (2000a) and Thomas et al.
(2004) suggested a care approach that established professional boundaries yet allowed for a
supportive personal relationship with patients and families. While some cultures expect medical
paternalism because of their inherent trust in authority, many Euro-centric cultures voiced a
greater desire for autonomy and shared decision making (Hirai et al. ; Miyashita et al.; Thomas et
al.). Kelly and Minty (2007) add that building trust can take significant time, especially for those
with historical trauma such as Canadian Aboriginal peoples. Balancing the need for paternalism
and shared decision making requires understanding of the patient's beliefs and values.
Regardless of the approach taken, effective therapeutic communication will be required.
Communication
The third good death domain centres on communication; a consistent and important
theme throughout good death literature. Several studies reported the significance of active
listening along with open and truthful dialogue in order to build trust, empower patients, and
provide opportunities to discuss questions, fears, desires, and available options (Hattori et al.,
2006; Heyland et al., 2006; Kehl, 2006; Kelly & Minty, 2007; Steinhauser et al. , 2000a; Tong et
al. , 2003). Other researchers addressed the need to provide anticipatory guidance about the
likely sequence of events and physical signs characterizing key transition points signaling
impending death (Gott et al. , 2008; Jacques & Hasselkus, 2004; Steinhauser et al. ; Tayeb et al. ,
2010; Terry et al., 2006; Thomas et al. , 2004). Having someone to facilitate understanding of
information, address myths or unrealistic expectations surrounding the dying process, and affirm
treatment choices helped patients mentally prepare for dying and relieve fears (Bullock et al.,
2005).
When language barriers are an issue, Kelly and Minty (2007) recommend the use of
interpreters but caution that their use needs to be done with foresight such that interpreters not

35
only have good understanding of the language but also of the patient's culture. They also warn
against the use of family members as interpreters given the potential for breach of privacy and
potential undeclared value conflicts between parties. Mjelde-Mossey and Chan (2007) add the
importance of health providers having cursory understanding of cultural rules and superstitions
to prevent unintentional over-disclosure or discussion of taboo subjects.

In their work with terminal patients, family, and care providers in the Netherlands,
Goldsteen et al. (2006) found that many patients were supportive of open acknowledgment and
communication with family about their impending death but others were more reserved. Terry et
al. (2006), in their ethnography of hospice patients, also found that not all patients desired
complete transparency. Some patients even voiced fear for their decisional autonomy if family
were made fully aware of their EOL preferences and thus requested the opportunity to censor
information that was to be shared with family members.
Similar to information censoring is the concept of truth-telling in which some cultures
believe it is customary to hide serious diagnoses from loved ones in order to protect them from
harm. While truth-telling may be seen to some as a barrier for patients in accepting one 's
nearness to death, it is often steeped in traditional cultural beliefs around death and dying with an
intention of support or protection, not maliciousness. Hattori et al. (2006) stressed that in
traditional Japanese culture bad news is considered cruel and since the famil y's role is to protect
loved ones from potential harm, many families may only agree to partial disclosure. Kelly and
Minty (2007) similarly found that relatives of ill Aboriginal patients may not want to disclose the
seriousness of their loved one's illness trajectory because of a belief that positive thoughts help
promote health and that discussing terminality may hasten death.
Mjelde-Mossey and Chan (2007), in their general population survey in China, found that
discussing death was thought to bring bad luck or early death for ill individuals within traditional

36
Chinese culture; consequently care planning decisions may be left to health professionals or
implied through nebulous discussions. Contrary to support for non-disclosure, Leung et al.
(2009) in their Chinese study of lay persons, found that the majority of their respondents
supported full disclosure so that individuals could develop an understanding of the terminal
nature of their condition before moving on to acceptance of death within the context of one 's life
journey and eternal afterlife. These variances within and across cultural groups again reinforces
the need for individualized assessment when working with clients experiencing terminal
conditions.
Only one study specifically focused on pediatric terminal care but did speak to the
importance of an appropriate communication approach with this population (Hendrickson &
McCorkle, 2008). The authors asserted that children with life-threatening conditions often
acquire an adult-like understanding of death beyond their years regardless of whether death is
spoken about or not. Many are perceptive enough to inherently know something is wrong but
may not be able to grasp the significance in relation to impending death. The authors therefore
advocated preparing children for death by involving them in discussions about EOL care
preferences, but at an age appropriate level. While not specifically mentioned by the authors in
this study, developmentally appropriate communication that considers life stage and context may
be prudent for all patients facing EOL decisions.

Quality of Life Issues
The final good death domain focuses on the importance of maintaining quality of life
(QOL). While QOL is a complex and subjective concept, it was consistently identified
throughout the literature as an important component of a good death (Veillette et al. , 201 0).
Elements characterizing QOL include providing integrated holistic care; maintenance of dignity,
respect, and personhood; and sense of control.

37

Providing integrated holistic care. Several authors noted the importance of patients
feeling affirmed as unique wholly integrated individuals within their holistic relational existence
(Kehl, 2006; Pierson et al. , 2002; Steinhauser et al. , 2000b; Veillette et al. , 2010). While physical
comfort was of significant importance toward relief of suffering, QOL also included other
holistic dimensions such as attending to the physical, psychological, social, emotional, and
spiritual well-being within the context of that individual 's life and values (Tracey, 2009). This
was a particularly important perspective for Aboriginal peoples who viewed ill health as
reflecting imbalance within these interdependent dimensions (Kelly & Minty, 2007). Since each
culture views health, illness, and holism differently, a thorough assessment with clear
communication and cultural sensitivity would be prudent.
Faith and spiritual beliefs influence one 's view on death and the process of dying. While
the theme of faith and spirituality appeared across several studies, they were most prominent
among minority groups, with some using it as a positive coping mechanism during times of
vulnerability and uncertainty (Bullock et al. , 2005 ; Steinhauser et al. , 2000a, 2000b; Tong et al.,
2003). In their study of older African Americans, Bullock et al. (2005) found that death was seen
as a process of transition, not a fmal stage in their life cycle, and that spiritual customs (e.g.
reading scripture, prayer, last rites) were an important part of this transition from life, to death, to
spiritual afterlife. Spiritual conviction helped participants find meaning in life and suffering
while providing hope during the dying process (Bullock et al.). Likewise, Tayeb et al. (2010)
noted that their Muslim participants found spiritual and emotional support was greatly valued.
They also discovered that death and the dying experience were believed to be closely linked to
faith. For instance, suffering was seen as atonement for one 's sins and religious rituals or
ceremonies such as reciting Qur ' an verses, death position, place, and timing of death in relation
to a holy time were important for a good death.

38
In contrast to viewing faith and spirituality as important and supportive, Hirai et al.
(2006) and Miyashita et al. (2007) found spiritual beliefs were less important for participants in
their respective Japanese studies. Similarly, in their study of Americans dying of acquired
immunodeficiency syndrome (AIDS), Pierson et al. (2002) found mixed views about the role of
spiritual traditions. Some participants found religious traditions to be important, while others
were indifferent, and still other participants feared having the beliefs of family, hospice
volunteers, or health practitioners imposed on them. From the diversity of views identified about
faith and spirituality, the importance of effective communication and individualized assessment
is once again reinforced.

Maintenance of dignity, respect, and personhood. For many, QOL meant preservation
of personal dignity, respect for individual style, and maintenance of personhood (Hendrickson &
McCorkle, 2008; Kehl, 2006; Miyashita et al. , 2007; Pierson et al., 2002; Rietjens et al., 2006;
Steinhauser et al. , 2000a; Tayeb et al. , 2010; Thomas et al. , 2004). Loss of control over physical
and cognitive self was seen to contribute to loss of dignity. For many participants this translated
into a preference for one 's final living moments to be peaceful, painless, unknowing, and in the
presence of important people (De long & Clarke, 2009; Gott et al., 2008; Hughes et al. , 2008;
Kehl; Kelly & Minty, 2007; Miyashita et al. ; Pierson et al. ; Steinhauser et al. ; Vig et al. , 2002;
Vig & Pearlman, 2004). For other participants, dignity was correlated with self-image, intact
bodily functions, maintaining appearance, mental alertness, and not exposing feebleness (Hirai et
al., 2006; Miyashita et al. ; Pierson et al.; Rietjens et al. ; Steinhauser et al.). Loss of dignity was
therefore seen as a contributor to a bad death and associated with debilitation, loss of
personhood, and objectification. This was particularly important for Muslims in Saudi Arabia
who identified body image, cleanliness, and appearance as very important for a good death (e.g.,
no distortions, deformities, or bad odors); not only for self-dignity but for how others experience

39
their body (Tayeb et al. , 2010). Terry et al. (2006) found similar sentiments from hospice
patients with a fear that the dying process would cause their behaviour to become incongruent
with their long-held character.
Toscani et al. (2003) added the importance of death atmosphere aesthetics, in that one's
death scene determines the quality of memory for those left living and reinforced the need for
visions of peace, tranquility, and rituals. When patients feared their dying process would
negatively affect loved ones, De long and Clarke (2009) found these patients would
subsequently prefer to die alone. Diversity again became the reinforced theme where some
participants voiced a clear preference for a soft, quiet atmosphere while others envisioned solace
with open mourning (Pierson et al. , 2002; Toscani et al.).
Sense of control. Linked to maintenance of dignity and respect for individual choice is
the desire for autonomy, self-determination, and personal control over self, dying process, and
EOL care decisions (Gott et al. , 2008; Hattori et al. , 2006; Heyland et al. , 2006; Jacques &
Hasselkus, 2004; Kehl, 2006; Leung et al. , 2009; Pierson et al. , 2002; Steinhauser et al. , 2000a;
Tang, 2003 ; Tayeb et al. , 2010; Terry et al. , 2006; Tong et al. , 2003). Like other good death
elements there was variability in viewpoints and preferences related to autonomy and control.
Leung et al. (2009), Matsui et al. (2009), Miyashita et al. (2007) and Rietjens et al. (2006) found
a propensity for independent decision making among the Chinese, Japanese Americans,
Japanese, and Dutch groups they respectively studied. Kelly and Minty (2007) also identified
Aboriginals valuing personal independence in decision making but retaining tremendous respect
for the wisdom, experiential, and spiritual insights that elders could add to the decision making
process. Familiarity with cultural beliefs, personal values, and preferences was also appreciated
by minority groups, likely related to fear of racism and medical paternalism contradicting their

40

:
'.

personal values and preferences (Bullock et al. , 2005). A clear message was the expectation for
care team members to respect patient wishes (DeJong & Clarke, 2009).
Other studies focused on personal control through regulation of who is involved with

.

caregiving and present during EOL (Kehl, 2006; Tayeb et al., 201 0). Several studies highlighted
the need for consistent, accessible, responsive, and affordable resources for around-the-clock
symptom control; providing a sense of safety and security during a most vulnerable time
(Bullock et al. , 2005; Gott et al. , 2008; Heyland et al. , 2006; Terry et al., 2006; Thomas et al. ,
2004; Veillette et al. , 2010). Control over physical comfort at EOL was consistent across the
majority of studies; crossing cultures, generations, belief systems, and disease experiences (De
Jong & Clarke, 2009; Gott et al.; Hattori et al., 2006; Hirai et al. , 2006; Hughes et al. , 2008;
Kehl; Kelly & Minty, 2007; Leung et al. , 2009; Miyashita et al. , 2007; Pierson et al. , 2002;
Rietjens et al., 2006; Smith-Stoner, 2007; Steinhauser et al. , 2000a, 2000b; Tayeb et al.; Tong et
al., 2003; Vig et al. , 2002; Vig & Pearlman, 2004). Some participants related suffering to loss of
personal integrity while others related pain and symptom crisis to increased anxiety and distress
thereby resulting in loss of dignity and control (DeJong & Clarke; Gott et al. ; Hendrickson &
McCorkle, 2008).
Kehl (2006), Masson (2002), and Steinhauser et al. (2000a) found that while symptom
management is important, sometimes it competes with other preferences such as mental alertness
and ability to communicate; important contributors to personal autonomy and control. Unlike
pain and symptom management, preference for remaining conscious at EOL differed among
study groups. In their survey of Dutch general public, Rietjens et al. (2006) found that younger
and lower educated respondents voiced greater preference than older and better-educated
respondents for a conscious state until death. Whether this reflects generational comfort with
death and afterlife is unclear. Toscani et al. (2003) also found differences for alertness at EOL

••••

41

between non-believers and believers. While believers were comfortable with a non-awake state
during one's final moments, non-believers wanted to protect their self-identity and saw a
conscious death as one last opportunity to fully experience life in totality.
Irrespective of disease state, age, or worldview it seems that patients want at least some
sense of control during the dying process. Whether this sense of personal control can be
achieved through advanced care planning decisions was not fully explored within the studies
reviewed. It would be advantageous to explore what determines personal control at EOL given
the push for increased advanced care planning and that individual EOL care preferences can
change as one's dying context changes.
How Might a Rural Context of Care Impact a Good Death?

The literature was sparse regarding a good death within a rural context of care. In fact,
only three studies, all Canadian and from the same authors, touched on rural good death
implications. Consequently, some of the following arguments are supported with rural-focused
literature drawn from outside this project's literature search.
Choosing to remain in one 's rural community to die does not automatically translate into
a bad death. It may however mean that care providers and family members must work harder to
ensure resources are available to support EOL care preferences, especially services that are
typically located within more urban centres. Due to limited specialist providers in rural
communities, the vast majority of dying patients are cared for by generalist practitioners who
may not have formalized EOL care training (Kelley, Sletmoen, Williams, Nadin, & Puiras, 2012;
Wilson et al., 2009a). While there is an increasing need for rural EOL care services, access to
these resources remain greater in urban centres where specialist practitioners and programs are
located.

42
When urban specialized services are necessary the patient must either go to where the
services are provided, or have the services come to them. More commonly, patients are required
to travel in order to minimize health system costs (Wilson et al. , 2009b). Fortunately the
electronic age is bridging some of this burden by providing avenues for patients and practitioners
to consult with specialists for care planning without having to leave the comfort and security of
their home community. This not only decreases the physical burden of travel, but can help
minimize other negative impacts such as risks associated with travel during adverse weather
conditions, costs of temporary relocation and absence from work, along with separation from
emotional supports.
With fewer formal care services available in rural communities, the burden of care lands
on the shoulders of family and other informal community supports (Donovan & Williams, 20 12;
Wilson et al., 2009a). Access to adequate respite and home support services may not be
available in rural centres and if family support persons also reside outside the patient's
community, further dependency and potential burnout may result (Wilson et al. ; Wilson, Truman
et al. , 2009). With difficulties in recruiting and retaining appropriate health professionals with
EOL care experience, care consistency and quality can be at risk (Wilson et al.). This then can
negatively affect a patient's sense of safety, trust, and security in EOL care reflecting their values
and preferences.
While there are several challenges to residing and spending one 's final days within a rural
community, there are also benefits. There exists a subculture of social connectedness and mutual
respect, even among residents who do not directly know each other. This was evidenced by
funeral attendance for long-time residents and family members of friends (Wilson et al., 2009b ).
Long-standing relational approaches, comradeship, and interconnected communication patterns

43
among residents helps spread important information and messages faster within informal circles
and thereby adds to the sense of community connectedness (Wilson et al. , 2009a).
This chapter has reviewed themed good death ideals that are individually unique and
shaped by interconnected sociocultural and personal influences: philosophical views on life and
death; decision making based on individualism versus collectivism; and personal context.
Following this discussion was an examination of thematically derived elements of a good death,
comprised of four overarching domains: preparation, sources of support, communication, and
QOL issues. Each of these domains included overlapping and interconnected attributes that are
heavily influenced by each individual 's personal and sociocultural context. Chapter Four will
expand on this discussion by posing several rural FNP considerations for supporting a good
death within BC.

44
CHAPTER FOUR
Role of Family Nurse Practitioners in Facilitating a Good Rural Death
Death does not discriminate based on geographic residence or individual demographic
differences. Due to their role as primary care generalist practitioners and their relative proximity
away from specialist health care services, rural FNPs should expect to take primary
responsibility for the organization and collaborative delivery ofEOL care services for those
wishing to remain in their rural home community to die. This will require knowledge and skill
associated with comprehensive EOL care for a diversity of clients across the lifespan. With an
absence of literature specifically addressing the unique FNP role in supporting a good death in
rural settings, many of the following considerations involve inference and deduction from this
project's thematic synthesis. Practice considerations will be reviewed within the following nine
areas inherent within FNP clinical practice: 1) advanced scope ofFNPs, 2) holistic care, 3) EOL
care planning and life expectancy, 4) consistency of care, 5) multidisciplinary collaboration, 6)
effective communication, 7) caregiver support and education, 8) continuing competence, and 9)
leadership.
Advanced Scope of Family Nurse Practitioners
At the core of nursing practice, regardless of regulatory level, is provision of
compassionate, comprehensive, ethical, and evidence-informed quality care that is unique to an
individual 's needs for holistic wellness, and built on the concepts of relational practice, health
promotion, collaboration, partnership, and cultural sensitivity (CNA, 2008, 201 0). As advanced
practice nurses, FNPs have been permitted additional regulatory authority to provide services
that go beyond the RN scope of practice (CNA,2009). This includes the-abilitY: tC? ~m
advanced physical and health assessments; diagnose and manage common diseases, disorders,
and conditions; order, conduct, supervise, and interpret diagnostic tests; prescribe pharmacologic

45
agents and non-pharmacologic therapies; perform advanced interventions for patients across the
lifespan; and admit or discharge patients from health facilities (CNA, 2010; CRNBC, 2012b).
This expanded scope allows FNPs working in rural settings greater ability to provide appropriate
and comprehensive EOL care for patient's within their home community, where access to
physicians and specialist services may be limited.

Holistic Care
People with persistent and life-limiting illnesses are motivating a shift in the primary
health care approach from one that is practitioner and disease centered to one that acknowledges
a relational and life-oriented perspective (Heyland et al., 2006; Masson, 2002). When engaging
with clients in primary care, particularly those from diverse backgrounds and experiencing lifelimiting conditions, it is important for FNPs to remember that one size does not fit all; different
patients need different approaches. While the biomedical model is helpful in understanding the
physical experience of illness and dying, it alone is incomplete and could lead to a
depersonalized interventional approach to care. A holistic and personalized care approach
attends to the physical, emotional, spiritual, psychological, and social domains; incorporating
personhood and humanness during the dying experience rather than purely focusing on the
physical aspects of dying.

While a holistic and personalized approach can be found across multiple disciplines, what
differentiates the FNP advance practice role is how FNPs combine the best of nursing's holistic
approach with the advanced depth and scope of medicine in order to provide comprehensive
patient care that honors a multidimensional view of health and wellbeing (CNA, 2010). For
instance, an inclusive and nonjudgmental presence is important when discussing medical care
options, particularly exploration of traditional, complimentary, and alternative therapeutics that
patients may be reluctant to self-disclose (Kelly & Minty, 2007; Roy & Jones, 2007).

46

End-of-Life Care Planning and Life Expectancy
Given that the majority of patients will die from chronic or life-limiting disease, rural
FNPs must develop competence in not only diagnosing acute and chronic conditions, but also
delivering bad news, recognizing when illness trajectory becomes terminal, determining best
timing for EOL discussions, and actively engaging in secondary and tertiary prevention to avoid
adverse events before they reach an intensity requiring emergency treatment or hospitalization.
In focusing on the individual's life left to live, along with wellbeing while dying, FNPs need to
then balance the maintenance of hope and positivity with grounded reality. This requires
ongoing dialogue and anticipatory counseling with patient, family, and allied health team
members about the patient's anticipated life expectancy; potential disease-related challenges and
associated care options; expected changes as death approaches; and realistic goal setting based
on the patient's individualized good death ideals and accessible EOL care resources.
Ideally, FNPs would begin advance care planning discussions with every new client in
their practice while encouraging patients to complete an advance directive (AD). Realistically
this may not always be possible and thus the FNP needs to be a skilled communicator in
anticipatory health counseling and exploration of medical care preferences to guide clinical
decision making. Also referred to as advance care plans or EOL directives, ADs are written
instructions made by a capable adult to provide specific examples of health care interventions
that the individual gives or refuses consent for in times when they are incapable of providing
such direction themselves (BCMOH, 2012a; CRNBC, 2013). Resulting from legislation
amendments to the Health Care (Consent) and Care Facility (Admission) Act [HCCFA] (1988),
ADs became recognized as legal documents in British Columbia in September 2011 (BC
Ministry of Justice, 2011 ). This means that FNPs are legally bound to follow the directions for
care conveyed within these documents. While FNPs can and should help patients with advance

47
care planning by means of ongoing dialogue and AD guides (BCMOH, 2012a), it is important to
note that they are not legally permitted to witness the signing of these documents if providing
care to that patient (HCCFA). Like other health professionals, rural FNPs must honor the ADs of
patients or consult substitute decision makers when no ADs are known.
According to Old and Swagerty (2007), a common question asked by patients at EOL is

"How long do I have?" [emphasis in the original] (p. 89). Being able to anticipate life
expectancy is an inexact science that can be stressful and complex, but can positively support
anticipatory bereavement and allow for arrangement of appropriate resources before crises occur.
Prognostication is an expected health assessment and diagnostic competency for FNPs in BC
(CRNBC, 2010b). A good starting point for estimating life expectancy might include the FNP
asking himself/herself " Would I be surprised if this patient died within th e next 6 months?"
[emphasis in the original] (Old & Swagerty, p. 93). When communicating estimated life
expectancy to patients and family, Old & Swagerty suggest reinforcing the difficulty in its
determination and using general time frames of ' months to years ', 'weeks to months' , ' days to
weeks ', and 'hours to days ' . This approach honors the need for those seeking timelines while
recognizing the individuality and unpredictable nature of dying and death.
It is well known that limited life expectancy for terminally ill patients is associated with
functional decline. As such, rural FNPs should gain an understanding of any change in the
patient's level of function in the areas of cognition and mental clarity; activities of daily living
(e.g. , dressing, eating, ambulation, toileting, and hygiene); continence, nutrition, and weight;
mobility; social engagement; and changing hematology values (Old & Swagerty, 2007; Province
of BC Guidelines and Protocols Advisory Committee, 201 0). Because FNPs may not see
patients as frequently as family caregivers or home care support workers, and given that some
patients may be too frail to attend the FNP 's clinic, it is vital that FNPs are able to glean

48
infonnation on the patient's status from the patient's family and collaborative care partners.
This may be accomplished through regular phone follow-up between clinic or home visits. The
Palliative Performance Scale (PPS) (Victoria Hospice Society, 2006) may also serve well as a
tool for consistent assessment communication between health care colleagues and family
caregivers. The PPS is a framework to measure physical performance based on one 's degree of
ambulation, activity level or extent of disease, self-care ability, nutritional intake, and level of
consciousness. The PPS scale uses 10% decrements, with 100% representing full activity and
health, 70-100% signifying a stable palliative state, 40-60% reflecting a transitional EOL state,
10-30% signaling an active dying state, and 0% indicating death (Victoria Hospice Society).
While based on subjective judgment of an individual's level of function , the PPS is a tool with
demonstrated good overall reliability and ease of use that can support assessment consistency
when estimating terminal decline (Campos et al., 2009; Lau et al., 2009).
Another resource for rural FNPs to consider is the BC clinical practice guideline titled
"Palliative Care for the Patient with Incurable Cancer or Advanced Disease Part 1: Approach to
Care" (Province of BC Guidelines and Protocols Advisory Committee, 201 0). Not only does this
document provide assessment tools to identify functional decline and symptom burden, it also
identifies signs indicating imminent death, and outlines numerous recommendations for
comprehensive care planning actions from the time of palliative diagnosis through active dying
and bereavement care.

Multidisciplinary Collaboration
Ideally, EOL care delivery is a multidisciplinary collaboration with overlapping roles
amongst team members, yet maximizing each individual 's scope of practice to ensure
comprehensive, streamlined, and well-coordinated care. EOL care coordination, particularly in
rural settings, is a complex and time intensive role that often falls to disciplines consistently

49
present within the rural community. Often adding to the complexity of rural EOL care is the
relative distance from specialist practitioners and health care resources, thereby necessitating the
FNP within rural communities to take on activities they might normally entrust to others when
practicing within an urban context.
While FNPs are legally permitted to perform activities within the RN scope; efficient
practice encourages rural FNPs to work collaboratively with other team members involved in the
patient's care, thereby allowing time for rural FNPs to focus on activities within their expanded
scope. This expanded scope often includes advanced level assessments; ordering, interpreting,
and acting on diagnostic tests; identifying treatment plan options; prescribing a variety of
medications and other therapeutic interventions to prevent and manage EOL symptoms; and
completing home visits for house-bound patients. Within the multidisciplinary team the FNP
may also play a significant leadership role in facilitating linkages to regional and local palliative
care and hospice resource programs.
Despite the fact that rural FNPs in BC primarily function as expert generalists in primary
care settings and that their legislated scope of practice continues to expand, statutory barriers
continue to hamper FNPs in delivering full scope EOL care. As such, rural FNPs need to be
fully versed in the legislated scope and restrictions governing care commonly provided at EOL
(CNA, 2010; CRNBC, 2012 a) . Although recent federal legislation changes allow for FNPs to
prescribe, administer, and provide legal controlled substances (e.g., narcotics, benzodiazepines,
and methadone), provincial legislation and organizational guidelines still require amendment
before rural FNPs can incorporate this into their clinical practice (CRNBC, 2013; Health Canada,
2012b). Other examples of restricted FNP abilities common to comprehensive EOL care include
the inability to complete: 1) a No Cardiopulmonary Resuscitation form for those wishing not to
have cardiopulmonary resuscitation performed in the event of respiratory and/or cardiac arrest

50
(BCMOH, n.d.); 2) Notification of Expected Death in the Home form (BCMOH, 2010b); and 3)
a Medical Certificate of Death, even if this death is expected and the FNP has been the primary
care provider for this patient (College of Physicians and Surgeons of British Columbia, 2009;
CRNBC, 2013). Completion of the aforementioned forms remains under the physician-only
scope of practice. Until statutory amendments expand NP authority to include these provisions,
rural FNPs need to engage in collaborative patient management with physician colleagues for
those interventions and decision making that fall outside their professional scope of practice or
area of expertise (CRNBC, 2012 a; Steinhauser et al., 2000 b).

Consistency of Care
An essential element in facilitating a good death that was consistently highlighted within
good death literature was around-the-clock access to professional care providers familiar with the
patient's personal context and EOL care preferences. Research participants stressed that care
consistency helps limit the burden on patient and family from having to repeat their story over
and over and rearticulating goals as team members change (Bullock et al., 2005; Hendrickson &
McCorkle, 2008; Heyland et al., 2006; Hirai et al., 2006; Thomas et al., 2004; Veillette et al.,
201 0). Consistency of team members also supports an environment of care continuity, where
practitioners develop understanding of an individual 's preferences for holistic EOL care through
genuine long term relationship and not simply from prescriptive written advance directives.
Having FNPs in salaried positions within BC affords the flexibility to visit patients across a
variety of settings, be that in local hospital , hospice, the patient's own home, retirement
residence/assisted living, complex care facility, or primary care clinic. With the FNP as central
care coordinator, along with having advance assessment skills, home visits can help improve
continuity of care while also helping to recognize emerging problems which can be caught early
and proactively managed to prevent crises, distress, and suffering.

51
According to CRNBC (20 12b) FNPs "have an ethical obligation to be available to
provide care for their established patients on a 24-hour basis either personally or through
ongoing call schedules" (p. 14). It therefore makes sense that the rural FNP would play an
important role in care coordination and provision so that care consistency can be maximized.
Unfortunately, current FNP remuneration in BC is primarily based on a standard work-week
salary model with no ' on call' financial provisions having yet been made available. This
structure thereby becomes a barrier to around-the-clock care consistency by primary care
practitioners familiar with the patient's EOL goals and preferences. In rural communities this
could potentially result in burnout for physicians taking call for FNP colleagues, or displacement
of patients out of their home community to receive necessary care. On-call remuneration is
likely an area for ongoing contract negotiation and in future may result in ' in lieu ' days or
consolidated time away to pursue professional development.

Effective Communication
Given the economic environment of declining resources and the fact that rural
communities are less likely to attract and retain specialist practitioners (Romanow, 2002), FNPs
need to develop competence with electronic and other technology tools to ensure effective and
timely communication, consultation, and referrals for patient health and social resource needs.
Alternative methods of communication are especially important for times when the patient
and/or his/her caregiver are unable to physically travel to medical specialists and other resource
supports yet require their insights and management recommendations. As effective
interdisciplinary team members, rural FNPs need to develop proficiency in clearly and concisely
communicating the patient's condition to others while also developing a sense of comfort and
competency when carrying out recommendations of specialists; one of the greatest differences
between 11Jral and urban primary care FNPs. In urban practice, patients can see the specialists

52
face-to-face but in rural practice this may not be realistic. Therefore, FNPs become the
intermediary and generalist action professional. He/she also becomes an expert among informal
caregivers and is seen as the health care leader, resource person, educator, and role model in the
eyes of formal and informal caregivers (CNA, 2010; CRNBC, 2010b; CRNBC, 2012 a). Being
able to collect important information from family and collaborative care partners, while also
effectively communicating EOL care plan directions, both verbally and in writing, become
essential to providing comprehensive and consistent EOL care.

Caregiver Support and Education
Care within one's home at EOL is often a 24/7 commitment that can be physically,
emotionally, and socially draining; factors that weigh heavil y on patients' considerations for
place of death. The potential for burnout among EOL caregivers is high when time and care
intensity increase during extended terminal trajectories typical of chronic progressive illnesses.
Although health and human resources tend to be scarcer in smaller and more isolated
communities, rural communities are known for their resiliency and communal nature, especially
during times of stress and strain (Kulig & Williams, 2011 ). This can be capitalized on by rural
FNPs in helping patients and collaborative partners identify and recruit informal resources,
including family, friends , neighbours, religious group members, home and community care
workers, private skilled care services, and trained hospice volunteers (Castleden et al., 2009;
Kulig & Williams). While assessing and helping with the arrangement offmancial and social
supports (e.g. , federal employment insurance compassionate care benefits program) (Service
Canada, 2012) is often completed by social workers in urban centres, this role may fall to the
FNP in rural communities that do not have social work positions. Likewise, provision of respite
through admission privileges, and providing counselling to individuals, families, and groups fits
within the advance scope of FNP practice.

53
A significant education function for FNPs is providing anticipatory guidance and
teaching to patients, family members, and community supports for such topics as illness
trajectory, symptom management, red flags with follow-up plans, crisis prevention, and signs of
impending death. Information allows individuals to prepare physically, psychologically, and
socially for what is to come. Families may not have personal experience with dying or death and
therefore will need education on what to expect as the patient transitions through the terminal
stages of their disease and physical signs cue key transition points signaling impending death.
Knowing what to expect can facilitate a sense of control and help reduce anxiety. Sometimes
patients and family may just not know what questions to ask but in regular follow-up meetings,
with replication of key messages, the probability of addressing important questions and concerns
is greater. An additional resource for ongoing family support may include the development of an
EOL care 'toolkit' that provides general information on EOL principles, answers to frequently
asked questions, lists of appropriate community resources, and provision of checklists to support
decision making around final arrangements commonly encountered at EOL (Castleden et al. ,
2009).

Continuing Competence
Rural FNPs must not only possess a baseline understanding of palliative care philosophy
but also a working knowledge ofEOL interventions to support physical symptom management
(e.g. , pain, dyspnea, anxiety, and confusion) and crisis prevention. Therefore, FNPs must
possess the ability to interpret and critically appraise evidence to inform clinical decision
making. Fitting with CNA's (20 10) expectation for ongoing self-evaluation of practice
competence and continuing professional development, rural FNPs may need to engage in
theoretical and practical continuing education to enhance their ability to provide appropriate

54
EOL care, especially if the FNP 's educational preparation did not provide sufficient theoretical or
practical experience with EOL care provision.
Fortunately, there are several provincial and national initiatives to support professional
development in EOL care, along with access to specialist support services for decision making
about therapeutic interventions and ethical issues. For example, there is a 24/7 accessible
palliative care consultation line aimed at health care practitioners (BCMOH, 2012b). Each
provincial health authority has hospice palliative care online resources for family and
practitioners, and the Province of BC Guidelines and Protocols Advisory Committee (20 10,
2011 a, 2011 b) has several online palliative care clinical practice guidelines to support clinical
decision making by primary care providers. Additionally, the Faculty of Medicine at the
University of British Columbia (UBC) offers a three day theory and practice module on
palliative and EOL care (UBC, 2012). Victoria Hospice, which is a provincial charitable
organization in BC, offers a variety of continuing education resources and electronically
accessible clinical tools for health professionals (Victoria Hospice Society, 2012). Similarly, the
Canadian Virtual Hospice, through their electronic website, offers information and support links
aimed at both the general public and health professionals regarding palliative and EOL care
education, symptom management, and bereavement (Canadian Virtual Hospice, 2012). The
Australian Medical Association also offers a clinical practice guideline that FNPs may fmd
supportive when preparing to discuss prognosis and EOL issues with patients and their
caregivers (Clayton, Hancock, Butow, Tattersall, & Currow, 2007). When rural FNPs gain
appropriate knowledge and clinical competence with EOL symptom control measures, they can
become more proactive in therapeutic management while confidently reassuring patients and
family that physical comfort can be attained and suffering minimized.

55

Leadership
As identified by CRNBC (2010b), all FNPs are responsible for guiding, initiating, and
providing leadership "in the development and implementation of standards, practice guidelines,
quality assurance, and education and research initiatives" (p. 11 ). While not all rural FNPs will
be experts in EOL care, those that are can promote evidence-informed practice decisions as a
component ofEOL leadership. Rural FNPs not only use research to guide their own clinical
decision making but can role model the implementation of research fmdings (evidence-informed
practice) as a way to counter hegemony and champion change in clinical practice. This may
involve providing clinical leadership within multidisciplinary teams, providing mentorship for
students and novice practitioners, and/or engaging in conference presentations and collaborative
publications.
Community leadership involves engagement in community partnerships and capacity
building with formal and informal support networks to facilitate the design, implementation, and
enhancement of services to meet the current and ongoing needs of patients requiring EOL care in
rural communities within BC (Bushy, 2002). With this goal in mind, rural FNPs may therefore
need to engage in inter-sectoral collaboration for the purposes of coalition building, campaigning
for sufficient resources from various levels of political, community, and non-governmental
sectors, as well as lobbying for EOL care to be on the political, economic, and research agenda.
As professionals in the regional health authority, rural FNPs can assist in health policy
transformation by participating in the development and evaluation of innovative care approaches
to meet the needs of the diverse community members they serve.

It is also important for FNPs to recognize that although they work within a health care
system dominated by Western medical ideals, they can contribute to new normative expectations
within this paradigm (Goldsteen et al. , 2006). In doing so, rural FNPs play an important role in

56
social transformation and political activism as a form of advocacy, empowerment, and societal
altruism (CNA, 2010; Roy & Jones, 2007). Rural FNPs may also choose to become involved in
organizational policy, procedure, and guideline development groups; participate in primary and
secondary research to identify clinical and organizational EOL needs; or seek out opportunities
to collaborate with administrators toward wider organizational change supportive of holistic and
person-focused quality EOL care for all.

57
CHAPTER FIVE

Conclusion
This integrative literature review of good death research sought out to identify influences
that shape good death ideals and specific elements necessary for supporting a good death,
specifically with those choosing to die within their rural home communities. A key message was
the diversity of perspectives and subjective characterizations of what constitutes a good death
within and across sociocultural groups. Factors influencing one 's beliefs and values about dying
and death included philosophical views on life and death, one's sociocultural beliefs about
individualism versus collectivism, and one's personal context, including sociocultural normative
expectations, geographical context, and illness considerations.
Specific elements contributing to a good death identified in the research literature
involved four overarching domains, each with their own overlapping and interconnected
attributes, again heavily influenced by each individual 's personal and sociocultural context. The
first domain was preparation for death, which included a solitary reflective process and time to
engage with others around life closure, reconciliation, and generativity activities. For some,
preparation also included decision making and arrangements regarding the practicalities of death
and posthumous plans for significant others. The second domain focused on sources of support,
including family, health care professionals, and community relations. Again, this domain was
heavily influenced by sociocultural expectations and varied definitions of what constitutes
family. Key themes in the evidence on sources of support included the importance of
genuineness, companionship, emotion support, consistency, and understanding of patient
preferences.
Communication was the third domain and research highlighted the importance of
openness and honesty in building a trusting therapeutic relationship. Communication was also

58
identified as important in supporting caregivers prepare for upcoming EOL experiences by
demystifying the dying process, relieving fears , and providing reassurance of ongoing care
provision to relieve their loved one's suffering. The final good death domain focused on
maintaining QOL through provision of care with the goal of maintaining dignity, respect, and
personhood, while also attending to holistic dimensions of wellbeing (psychical, psychological,
social, emotional, and spiritual needs). Linked with QOL and maintenance of dignity was
supporting a sense of control and choice over as many aspects of EOL as possible.
Given the increasing presence of FNPs in rural primary care settings in BC, it was
important to identify the role of FNPs in facilitating a good death for those wishing to remain in
their rural home

m~

to di<i. Based on this project's findings, nine areas of consideration

......5..-. .

-

'

for FNPs role in s\i'I1POl'fmga·go·oo rural death were discussed including: advanced scope ofFNP
practice; EOL care planning and life expectancy; holistic caie·; ·cohsi'stency of care provision;
multidisciplinary collaboration; effective communication skills; caregiver support and education;
continuing competence; and leadership. This discussion focused on the advanced practice scope
of FNPs, beyond that of RN s and other health team members who might also be involved in
supporting rural EOL care. Working collaboratively with multidisciplinary team members, each
maximizing their own professional scope of practice, will help ensure comprehensive,
streamlined, consistent, and well-coordinated care in a setting where physical physician and
specialist presence is likely to be limited.

Potential Limitations and Future Considerations
The findings of this project may be limited by the numerous surrogate and overlapping
terms related to concept of good death (e.g., peaceful, natural, appropriate, desirable, decent,
healthy, beautiful, or correct death; dying well; good ending, close, or completion; best death;
dignified death; socially approved death; and resigned death) that were not included in the search

59
terms for literature retrieval. It is therefore a risk that key articles informing a good death were
inadvertently omitted using the chosen search terms for this project. Likewise, there are other
related concepts to a good death, such as quality of life, quality of care, and quality of dying that
may have informed FNP practice considerations when facilitating a good death in rural BC.
While a manual search of specific palliative care journals in stage two of the search strategy may
have provided additional studies to inform rural and EOL care implications for FNPs, time
limitations prevented this. Future expansions on this project would likely benefit from such
breadth of literature exploration.
This project reviewed studies of varying participant demographics and sample size.
While EOL subject matter does not lend well to double blind control studies, clinical trials and
population surveys involving larger samples of multi ethnic and multigenerational groups may
provide additional insights into the contributors to the diversity of good death ideals. As the
population continues to age and greater numbers of elders die from chronic progressive disease,
it will be important for health care practitioners to recognize how this older age cohort, along
with their particular sociocultural and life experiences with dying and death, will impact attitudes
and preferences for EOL care. While there are significant ethical considerations for primary
research with those at EOL, there is much to be learned about how to support EOL care toward a
goal of an individualized good death for all. Future research on generational, ethnic, spirituality,
and gender differences would further inform practitioners on contextual factors to consider when
asking about good death preferences and the resources necessary to ensure these wishes are met.
A significant portion of reviewed studies included participants with terminal physical
illness conditions such as cancer, AIDS, and heart failure. While these conditions characterize
common terminal conditions, there was a lack of research involving those with comorbid mental
illness. Considering 20 percent of Canadians will experience mental illness in their lifetime,

60
affecting one's cognition, mood, and behaviour (Centre for Addiction and Mental Health, 2012),
EOL research involving participants with comorbid mental illness would be informative for
additional considerations with this population. Additionally, while this project focused on

patient preferences for a good death, there is also much to be gleaned from the voices of family
members, informal caregivers, community, and cultural groups, along with health care
practitioners. It is important to consider the impact of death environments across each of these
groups given the intertwined nature of dying and death on all parties involved. Research-based
insights are also important for informing future enhancements to health practitioner curriculums,
professional development resources, and clinical practice guidelines with the goal of preparing
health practitioners to facilitate a good death for all.
While there are currently relatively few non-Aboriginal visible minority groups in rural
BC, immigrant and minority migration patterns are changing such that greater numbers of
immigrants and ethnically mixed families are relocating to rural communities. Findings from
this project that highlight good death considerations for minority groups may prove supportive
for future rural FNP practice. It may also provide health administrators rationale for improving
resource allocation to rural communities for those facing terminal illness and wishing to remain
in their rural home community to die.
While it is not expected that each rural FNP will specialize in EOL care, it is this
practitioner's hope that findings of this project provide insight into what patients find most
important and supportive in preparing for and experiencing a good death. FNPs combine the
best of nursing and medicine in order to provide holistic and comprehensive patient care that
honors a multidimensional view of health and wellbeing. The next step is for each rural FNP to
consciously consider how prepared the community they work in is to meet the needs of a
community members who may wish to die in their rural home community, and what he/she as a

61

community health leader can do to advocate for and organize appropriate care resources to
support such a wish.

62

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74
Appendix A: Table of Evidence
The following table of evidence uses Levels 1-6 to identify type and rigor of completed research
as recommended by Salmond (2007) and Stetler et al. (1998). Levels of evidence are outlined as
following:
Levell: Guidelines; Meta-analysis of multiple randomized controlled trials; Systematic
literature reviews
Level 2: Individual studies with experimental design; RCTs
Leve13: Quasi-experimental studies; Cohort studies
Level4: Descriptive non-experimental studies (opinion surveys) or qualitative approach;
Level 5: Case reports or from experience;
Level 6: Opinions of specialists
Author
Location
Level of
&Date
of Study
Evidence
Borreani &
Italy
4
Miccinesi (2008)
Literature
search and
review for
themes

Bullock et al
(2005)

USA

DeJong &
Clarke (2009)

Canada

Goldsteen et al
(2006)

~

s

Population

Study Focus

N

Medline literature Literature grouped into 21 articles
search from
categories: (a) EOL
October 2006 to preferences in patients
October 2007
with advanced stages
of terminal illness; (b)
contextual factors
influencing
!Preferences; (c)
guidelines & tools to
support practitioners
To better understand
4
Older African
22 adults
Qualitative American adults what matters for
Focus groups;
African American
NUD-IST 4
elders faced with
support and
death, dying and EOL
care; Part of larger
constant
comparative
study conducted to
method
improve EOL care in
analysis
one state
4
3 palliative care To understand
3 patients
Qualitative patients aged 60- components of good
Individual
80; Also
and bad deaths
interviews;
interviewed
.
.
pnmary caregivers
narrative
approach
(3), physicians
(3), nurses (6)
4
Terminally ill
To seek insight into
13 patients
Qualitative patients with life how terminally ill
Individual
expectancy less !Patients talk about
interviews;
than 3 months
dying and death;

75

hermeneutic
approach

Gott et al (2008) United
Kingdom

4
Qualitative Semistructured
interviews;
themed by 2
independent
researchers
with aid of
~U

living at home - current Western
patients (13); Also normative expectations
family caregivers about a good death
(13), professional
caregivers (13),
bereaved carers
(14)
People with
To explore the
40 patients
thoughts about, and
advanced heart
failure and poor concerns for, dying
prognosis, living and death
in own homes male (21 ), female
(19); median age
77 years

IST

coding

Hattori et al
(2006)

Japan

Hendrickson &
McCorkle
(2008)

USA

Heyland et al
(2006)

Canada

Hirai et al (2006) Japan

Literature search To clarify the meaning 44 articles
1
Literature
using 5 academic of a good death in the
review; concept databases; no time Japanese community
analysis using limitation
Rogers'
evolutionary
method
1
Literature search To clarify the
43 articles
using 3 academic dimensions involved in
Literature
revtew;
databases and
a good death of a child
with cancer; examine
dimensional
review of
analysis
bibliographies
perspectives of dying
technique
child, child 's famil y,
and health care
providers
434
Patients with
What seriously ill
3
Quantitative- advanced disease patients in hospital and patients
their family members
face-to-face
greater than 55
&
questionnaire years old;
consider key elements 160 family
interviews with Convenience
of quality EOL care
members
sample at 5
patients &
family
hospitals across
members
Canada
To identify
4
Patients with
13
advanced cancer components of a
Qualitative patients
Semi(age 20-80);
Japanese good death
structured
family members
interviews;
( 10), physicians

76

Hughes et al
(2008)

USA

Jacques &
Hasselkus
(2004)

USA

Kehl (2006)

USA

Kelly & Minty
(2007)

Canada

Leung et al
(2009)

China

(20), nurses (20)
content
from regional
analysis for
categories of cancer institutions
attributes and in Japan
concepts;
descriptive
analysis on
frequency of
attributes
100
Perceptions of a good
Adults with
3
patients
death among patients
Quantitative - primary lung
Cross-sectional cancer attending a with lung cancer
multi-disciplinary
design;
treatment clinic
individual
interviews;
content
analysis
5 patients
Patients in urban To explore the
4
occupation
Qualitative- 6 residential
hospice; patients surrounding dying &
month
death at a small
ethnographic (5), staff (22),
residential hospice in
volunteers (3)
study
the midwestern United
States
42
Literature search Western (North
1
articles
using 3 academic American, European,
Literature
databases; 1995- Australian)
review!Perspectives of the
2004; English
Rogers'
only; concerning concept of a good
evolutionary
adults (age 18 and death
method of
older); pertaining
concept
to Western culture
analysis
Literature search To understand cross- 40 articles
1
using 4 academic cultural issues in
Literature
databases; 1966- jProviding palliative
review
care to Aboriginal
2005
jPatients, especially
EOL decision making
and treatment
184
Lay persons To understand
4
laypersons' attitude
adults
Quantitative - adult age range
regarding good death
20-77; female
Survey
questionnaire predominance
SPSS statistical
analysis,
Cronbach 's

77

Masson (2002)

United
Kingdom

Matsui & Braun USA
(2009)

McGrath (2007) Australia

Miyashita et al
(2007)

Japan

Mj elde-Mossey China
& Chan (2007)

alpha
coefficients,
AN OVA
10 patients
Explore nonHospice care
4
patients (1 0) and professional
Qualitative !perceptions of good
relatives of
narratives
individuals who death
during taped
had died in
interview or
(1 0)
hospice
written
contribution
123
To explore death
Community
4
Adults
Quantitative- dwelling Japanese attitudes among
Cross-sectional Americans greater Japanese American
design; survey than or equal to 60 elders and examine
associations between
questionnaire years of age
death attitudes and
SPSS ,
EOL preferences
Cronbach 's
alpha, t-test,
Pearson r,
SpearmanR,
AN OVA
10 patients
To explore and
Indigenous
4
document wishes in
patients (1 0),
Qualitative relation to place of
Phenomenolog Indigenous
death for rural and
caregivers (19),
y, iterative,
remote Aboriginal
Indigenous and
open-ended
people
data collection non-Indigenous
interviews;
health care
workers (41 ),
thematic
analysis with interpreters (2)
aid ofNUD1ST coding
2548
To explore dimensions
4
General
adults
Quantitative - population (2548) of a good death in
Japanese cancer care;
Cross-sectional and bereaved
questionnaire family members clarify relative
importance of each
(513)
Exploratory
component; explore
factor analysis
factors related to an
and Cronbach 's
individual 's perception
alpha
of domains of a good
coefficients
death
430
General public - To explore the
4
attitudes, beliefs,
adults
Quantitative - adults equal or
preferences for EOL
greater than 18
Telephone
care, death & dying
interview
years of age

78

Pierson et al
(2002)

USA

Rietjens et al
(2006)

~

Smith-Stoner
(2007)

USA

s

Steinhauser et al USA
(2000a)

Steinhauser

USA

survey; SPSS ttest, chi-square
test
Exploration of what
35
Patients with
4
patients
constitutes a good
Qualitative advanced AIDS
versus bad death
Interviews;
grounded
theory analysis
To gain insight into the
1388
Dutch general
4
adults
characteristics
of
a
public
between
Quantitative ages of 20 & 93 good death for the
Mailed
Dutch general
questionnaire years
population
Chi-square
tests using
SPSS
88 adults
Atheists ages 18 Explore EOL
4
years and up; had preferences among
Quantitative
and Qualitative been atheists for at Atheists and apply
threefold model of
Online/paper least 10 years
spiritual care to assess
survey of openappropriateness of
ended & closed
potential interventions
questions;
content
analysis,
descriptive
statistics and
thematic
coding
To determine the
340
Patients from
4
patients
factors considered
Quantitative - Veterans affairs
important at EOL by
Cross-sectional and treatment
patients, their families,
database with
stratified
random
advanced chronic !Physicians, and other
national survey illness - seriously care providers
questionnaire ill patients (340);
recently bereaved
Chi-square
family (332);
tests, Fisher
physicians
(361);
exact tests of
independence, non-physician
Friedman tests, care providers
Wilcoxon tests, (429)
multivariate
exploratory
analysis, logic
regressiOn
To gather descriptions 17 patients
Full spectrum
4

79

Tang (2003)

USA

Tayeb et al
(2010)

Saudi
Arabia

.

Terry et al
(2006)

persons involved of the components of a
good death from
in EOLcare
stratified by role patients, families, and
providers
& randomly
sampled from
possible
participants Oncology & HIV
patients (17);
Nurses (30);
social workers
(12); Chaplains
(7); hospice
volunteers (8);
physicians (7);
bereaved family
members (5)
180
To explore the
Terminally ill
4
patients
preferences for the
patients with
Qualitative cancer recruited place of death among
Semifrom four tertiary terminally ill patients
structured
care hospitals and with cancer, to identify
interviews;
the reasons for
exploratory and two home care
selecting a preferred
programs in
descriptive
place of death, and to
Conneticut
study
examine the
importance of dying at
one 's preferred place
of death
26 adults
Muslims aged 18- To review the
4
Quantitative & 71 years; recruited TFHCOP good death
perception to
by random
Qualitativedetermine its validity
Questionnaire sampling from
for Muslim patients
and interviews one military
and health care
hospital
and focus
providers; to identify
(oncology,
groups;
and describe other
hematology,
Content
components of the
palliative care)
analysis for
Muslim good death
interviews and and one
perspective
focus groups; rehabilitation
center, and one
univariate
long-stay nursing
descriptive
statistics for
unit
questionnaire
36 patients
Hospice patients To describe the
4
concerns of dying
with advanced
Qualitative -

Qualitative Focus groups
& in-depth
interviews;
grounded
theory
approach with
aid ofNUD1ST coding

(2000b)

Australia

80
malignant disease patients about the
aged 44-92 years problems they would
face as death
(36); carers of
deceased patients approached
of the palliative
care service (18)
41 patients
To examine
4
Terminally ill
!Preferences for place
patients with
Qualitative cancer with
of death
Interviews;
estimated 3
grounded
months of life
theory
approach with remaining (41)
aid of Atlas. ti and informal
carers ( 18) living
analysis
in Morecambe
programme
Bay area of northcoding
west England
Community
To identify common 95 subjects
4
dwelling
domains that
Qualitative characterize a good
Focus groups; population of
minority and non- death in a diverse
independent
range of communityand thenjoint minority
individuals
dwelling individuals;
sessions of
describe differences
coding using
that might exist
QRS NUD-IST
between minority and
software;
non-minority
constant
individuals' views
comparative
analysis
8
Believers (4) and To identify the
4
adults
non-believers (4) influence ofbelieving
Qualitative from the general in individual life after
SemiItalian population dea.th on good death
structured
models
interviews;
individual and
group analysis
46
Two rural
To explore what
4
Individuals
constitutes a good
Qualitative - communities in
Ethnography Quebec; one close death from persons
and one some
living in rural Quebec
inclusive of
interviews and distance from
focus groups; Quebec City;
people having
constant
experience with
comparative
death and dying in
analysis
rural community;
Patient
interviews;
constant
comparative
analysis

Thomas et al
(2004)

United
Kingdom

Tong et al (2003) USA

Toscani et al
(2003)

Italy

Veillette et al
(2010)

Canada

81

Vig et al (2002) USA

Vig & Pearlman USA
(2004)

Wilson, ...
Canada
(2009)

~

Wilson, ...
Canada
Bhardwaj (2009)

staff at health and
non-governmental
organizations,
local health care
providers and
policy-makers
16 patients
To explore the
4
Geriatric
outpatients with attitudes of older
Qualitative non-terminal heart adults with medical
Interviews
using open and disease or cancer illness about EOL and
ifEOL preferences
close-ended
could be inferred from
questions;
current values
constant
comparative
analysis
26 patients
To learn how
Adult men
4
terminally ill with terminally ill men
Qualitative conceptualize good
heart disease or
Interviews;
and bad deaths
cancer
grounded
theory methods
34
To establish a
Two rural
4
participant
conceptual
communities in
Qualitative understanding of the
s
Ethnography; Alberta; broad
good
death
from
a
selection
of
participant
rural-Canadian
participants
observation,
perspective
formal
interviews and
focus groups;
constant
comparative
analysis
Not
To explore and defme
Document
4
the good death; to
defined
analysis within
Qualitative Ethnography rural Alberta and develop a baseline
understanding about
rural Quebec
death and dying in
rural communities that
were close or distant
from large cities in
Alberta and Quebec; to
help select two rural
communities in
Alberta and two
communities in
Quebec for focus
groups

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AND

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19

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9

16

0

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n/a

n/a

30

29

38

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36

1

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491

377

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214

373

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163

352

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472

357

432

208

366

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163

n/a

n/a

12

n/a

882

305

567

222

514

0

51

5

29

24

0

NOT

euthan
as1a
"term in
al
illness"

AND

prefere
nces
"term in
al
illness"

AND

wishes
Endof-life

AND

wishes
Endof-life

AND

wishes

NOT

euthan
as1a
Endof-life

AND

prefere
nces
end-oflife

AND

prefere
nces

NOT

euthan
as1a
Death

AND

prefere
nces

84

NOT

euthan
asia
Death

AND

wishes

NOT

294

159

249

108

226

0

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7

39 (1)

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303

287

444

123

80

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27

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5

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asia
Termin
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prefere
nces

289

265

325

120

78

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2

23

n/a

4

n/a

150

179

259

68

41

0

1

19

2

3

0

136

154

189

67

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1

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n/a

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n/a

190

91

107

57

246

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88

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46

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asia
Death
and
dying

AND

prefere
nces

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asia
Death
and
dying

AND

wishes

86
Appendix C: Manual Journal Search Results

Terms

"good death"
"good death" NOT euthanasia
"good death" AND wishes
"good death" AND wishes
NOT euthanasia
"good death" AND preferences
"good death" AND preferences
!NOT euthanasia
"terminal illness" AND
preferences
"terminal illness" AND wishes
End-of-life AND wishes
End-of-life AND wishes NOT
euthanasia
End-of-life AND preferences
end-of-life AND preferences
!NOT euthanasia
Death AND preferences NOT
euthanasia
Death AND wishes NOT
euthanasia
Terminal care AND preferences
Terminal care AND preferences
NOT euthanasia
Terminal care AND wishes
Terminal care AND wishes
NOT euthanasia
Death and dying AND
preferences NOT euthanasia
Death and dying AND wishes
NOT euthanasia

54
52
34

n/a
n/a

Canadian
Family
Physician
(potential for
review)
5 (1)
n/a
n/a

32

n/a

n/a

n/a

21

n/a

n/a

n/a

20

n/a

n/a

n/a

48

3 (1)

2

0

26
846

3 (1)

1

11

10

0
3

n/a

n/a

8

n/a

352

5

15

3

n/a

n/a

12

n/a

5

29

24

0

7

39 (1)

1

0

27

1

5

0

23

n/a

4

n/a

19

2

3

0

16

n/a

3

n/a

38

1

2

1

46

1

1

1

Journal ofRural
Health
Social Science &
Medicine
(potential for
review)

0

Nurse
Practitioner

0
n/a
n/a