Supporting Informal End-of-Life Caregivers in British Columbia by Angie Natingor

Supporting Informal End-of-Life Caregivers in British Columbia by Angie Natingor
Supporting Informal End-of-Life Caregivers in
British Columbia
by
Angie Natingor
B.B.A., British Columbia Institute of Technology, 2006
Dipl.T. (Marketing Management), British Columbia Institute of Technology, 2005
Capstone Submitted In Partial Fulfillment of the
Requirements for the Degree of
Master of Public Policy
in the
School of Public Policy
Faculty of Arts and Social Sciences
 Angie Natingor 2014
SIMON FRASER UNIVERSITY
Spring 2014
Approval
Name:
Angie Natingor
Degree:
Master of Public Policy
Title:
Supporting Informal End-of-Life Caregivers
in British Columbia
Examining Committee:
Chair: Dominique M. Gross
Professor
Judith Sixsmith
Senior Supervisor
Professor
Nancy Olewiler
Supervisor
Professor
Olena Hankivsky
Internal Examiner
Professor
Date Defended:
April 1, 2014
ii
Partial Copyright Licence
iii
Ethics Statement
iv
Abstract
There is an increasing desire amongst Canada’s elderly to be supported to die at home.
Families are vital in ensuring this, yet policies focused on end-of-life care do not address
how to meet their needs. This study explores why informal family caregivers in British
Columbia have inadequate access to end-of-life care resources, and proposes solutions
to address problematic issues. A discourse analysis of provincial end-of-life policies,
case studies of practice within the local health area of Vancouver-City Centre, and
interviews with informal caregivers identified key problem areas. Four policy options for
government consideration were designed and evaluated: increasing the availability and
extent of publicly funded formal home support; providing a single point of contact;
increasing the frequency and reach of family meetings; and creating local, communitybased services. Providing a single point of contact for families and seniors, such as a
patient navigator, is recommended as one approach to better assist informal caregivers
in providing end-of-life care at home.
Keywords:
informal caregiving; end-of-life care; palliative care; death and dying;
home support; home and community care
v
Dedication
For my parents, Celso and Helen, without whom this research would have been
uninspired.
And for my husband, Matthew. Only with your love, support and understanding
was this possible. This capstone is as much your achievement, as it is mine. I love you,
always.
vi
Acknowledgements
First and foremost, I would like to thank Judith Sixsmith for all her support and
wisdom in this process, and encouraging me to complete this work. Thanks to Olena
Hankivsky, for her insightful critique during my capstone defence. Thanks also to Nancy
Olewiler for her unending support and encouragement throughout my time in the
program.
I’d like to acknowledge key people who made this research possible. Many
thanks to Elizabeth Beddard-Huber and Dr. Romayne Gallagher for supporting my
efforts to conduct this research and helping me navigate the systems. Thanks also to
everyone who participated in interviews: Ella Garland, Janice Lochbaum, Anne
Longhurst, Catherine McNamee-Clark, Beverley Pitman, Maureen Shaw, Patricia St.
Laurent, Dr. Simin Tabrizi, Dr. Wendy Yeomans, and others who participated but remain
confidential. Your time, insights and contributions are very much appreciated.
To my friends, for your unconditional support and patience, and to Edward van
Dam, for all your encouragement both professionally and academically, I thank you.
And last, but certainly not least, my undying and never ending thanks to my
friends in the cohort and staff and faculty members from the School of Public Policy. I
am so thankful and feel so privileged to have shared this journey with you. It’s been an
honour.
vii
Table of Contents
Approval .......................................................................................................................... ii
Partial Copyright Licence ............................................................................................... iii
Ethics Statement ............................................................................................................ iv
Abstract ........................................................................................................................... v
Dedication ...................................................................................................................... vi
Acknowledgements ....................................................................................................... vii
Table of Contents .......................................................................................................... viii
List of Tables .................................................................................................................. xi
List of Figures................................................................................................................. xi
Executive Summary ...................................................................................................... xii
1.
Introduction .......................................................................................................... 1
1.1. Policy Problem ....................................................................................................... 2
2.
Background .......................................................................................................... 3
2.1. Understanding Informal Caregiving ........................................................................ 3
2.1.1. Who are the Informal Caregivers?............................................................... 3
2.1.2. Gender Differences in Informal Caregiving .................................................. 4
2.1.3. Seniors Caring for Seniors .......................................................................... 4
2.1.4. The Importance of the Informal Caregivers’ Role ........................................ 5
2.2. Burdens Faced by Informal Caregivers................................................................... 5
2.2.1. Risks to Employment and Earning Potential ................................................ 6
2.2.2. Personal Financial Costs ............................................................................ 6
2.2.3. Psychological and Physiological Strain ....................................................... 7
2.3. An Aging Nation ..................................................................................................... 8
2.3.1. Seniors and End-of-Life Care in Canada ..................................................... 8
2.3.2. The Cost of Dying ....................................................................................... 9
2.3.3. What is a Good Death? ............................................................................. 10
2.4. Current Supports Available to Informal Caregivers and Seniors at End-ofLife ....................................................................................................................... 11
2.4.1. Canada’s Employment Insurance Compassionate Care Benefit ............... 12
2.4.2. The BC Palliative Care Benefits Program .................................................. 12
2.5. Policy Context ...................................................................................................... 13
2.5.1. The Senate of Canada .............................................................................. 13
2.5.2. The Federal Government and End-of-Life Care ........................................ 14
2.5.3. British Columbia’s End-of-Life Framework and Action Plan ....................... 14
2.6. Moving Forward with Provincial Support for Informal Caregivers in
Providing End-Of-Life Care for Seniors................................................................. 15
3.
Methodology ....................................................................................................... 17
3.1. Research Questions ............................................................................................. 17
3.2. Research Approach .............................................................................................. 17
3.2.1. Critical Discourse Analysis: Provincial End-of-Life Policies ....................... 19
3.2.2. Case Study Analysis ................................................................................. 20
3.2.3. Interviews with Informal Caregivers ........................................................... 22
viii
4.
Research Findings ............................................................................................. 24
4.1. Critical Discourse Analysis: Provincial End-of-Life Policies ................................... 24
4.1.1. Discursive Practice.................................................................................... 24
4.1.2. Text Analysis............................................................................................. 27
4.1.3. Social Practice .......................................................................................... 29
4.2. Case Study Analysis............................................................................................. 30
4.2.1. Case #1: Vancouver Coastal Health ......................................................... 30
Summary and Limitations of Vancouver Coastal Health Findings ............. 32
4.2.2. Case #2: Providence Health Care ............................................................. 33
Summary and Limitations of Providence Health Care Findings ................. 35
4.2.3. Comparative Case Analysis ...................................................................... 37
4.3. Interviews with Informal Caregivers ...................................................................... 38
4.3.1. Supports Currently in Place....................................................................... 38
4.3.2. Unavailable Supports ................................................................................ 41
4.3.3. Other Considerations in Supporting Informal Caregivers ........................... 42
4.4. Summary: Research Findings .............................................................................. 44
5.
Criteria for Analysis of Policy Options.............................................................. 46
6.
Policy Options .................................................................................................... 50
6.1.1. Increase the availability and extent of publicly funded formal home
support...................................................................................................... 50
6.1.2. Provide a single point of contact for elderly end-of-life patients and
their families.............................................................................................. 50
6.1.3. Increase frequency and reach of family meetings ..................................... 51
6.1.4. Create local, community-based services and support networks ................ 51
7.
Analysis of Policy Options................................................................................. 53
7.1.1. Increase the availability and extent of publicly funded formal home
support...................................................................................................... 53
7.1.2. Provide a single point of contact for elderly end-of-life patients and
their families.............................................................................................. 57
7.1.3. Increase frequency and reach of family meetings ..................................... 60
7.1.4. Create local, community-based services and support networks ................ 62
8.
Recommendations ............................................................................................. 67
8.1. Policy Implementation .......................................................................................... 67
8.2. Future Policy Considerations ................................................................................ 69
ix
9.
Discussion of Limitations and Future Research .............................................. 70
10.
Conclusions ........................................................................................................ 72
References ................................................................................................................... 74
Appendices .................................................................................................................. 84
Appendix A. Details for Discourse Analysis Methodology ............................................. 85
Appendix B. Details for Case Study Analysis Methodology ........................................... 86
Appendix C. Sample Interview Schedule: Palliative Health Care Professionals ............ 89
Appendix D. Details for Interviews with Informal Caregivers.......................................... 90
Appendix E. Sample Interview Schedule: Informal Caregivers ...................................... 92
Appendix F. Ethical Considerations and Approvals....................................................... 93
Appendix G. Case Study Analysis Word Tables for Case #1: Vancouver Coastal
Health ....................................................................................................... 94
Appendix H. Detailed Case Study Analysis of Case #1: Vancouver Coastal
Health ..................................................................................................... 102
Appendix I. Case Study Analysis Word Tables for Case #2: Providence Health
Care........................................................................................................ 109
Appendix J. Detailed Case Study Analysis of Case #2: Providence Health Care........ 118
Appendix K. Descriptions of Informal Caregiver Interview Participants ....................... 125
Appendix L. Detailed Policy Options ........................................................................... 126
x
List of Tables
Table 1.
Overview of Research Methods Used to Answer Research Questions ........ 19
Table 2.
Overview of Cases Used in Analysis ............................................................ 21
Table 3.
Case Study Units of Analysis ....................................................................... 22
Table 4.
Criteria and Measures Used in Policy Analysis ............................................ 46
Table 5.
Overview of Policy Analysis Findings ........................................................... 53
List of Figures
Figure 1. Local Health Area 161 Vancouver-City Centre ............................................. 18
xi
Executive Summary
Canada’s older population is projected to significantly increase within the next
decade from approximately 3.8 million people in 2000 to over 6.9 million by 2021 (Fisher
et al., 2000, p. 5), and while many seniors at end-of-life desire a home death, threequarters of deaths in Canada still occur in hospital or long-term facilities (Carstairs &
Keon, 2009). For seniors who wish to die at home, this can only be achieved through the
help of informal caregivers: the unpaid family members providing care. Governments
have increasingly downsized medical and hospital care, causing informal care to
become the major form of care in old age. However, this shift in care from formal
institutions to home and community can have detrimental impacts to informal caregivers’
well-being, with financial, employment, and emotional burdens often experienced by
family members attempting to provide home care. If families are unable to cope with the
demands of caregiving, this can negatively affect the ability of seniors at end-of-life to
experience a good death, as well as result in an increased risk of seniors having to be
readmitted to acute care facilities.
The objective of this study was to address the policy issue that informal
caregivers in British Columbia currently do not have adequate access to resources
which would allow them the greatest opportunity to provide quality care to an elderly
family member who wishes to die at home. Resources to assist informal caregivers
include mechanisms to mitigate employment risks, financial burdens, and psychological
and physiological strain. However, achieving a good death for seniors at end-of-life is
also contingent on specific indicators, such as proper pain and symptom management,
meeting physical and emotional needs, adequately preparing for death, and honouring
wishes for death. These measures must be met, as inability to provide quality care for
dying seniors can also impact caregivers’ welfare.
In order to inform the development of policy options, the research methodology
was guided by two research questions: 1) In what ways do current palliative care policies
set the context for end-of-life seniors to have a good death at home?; and 2) In what
ways are informal caregivers supported in their role to provide quality care to an elderly
family member who wishes to die at home? To answer these questions, three separate
research approaches were undertaken. The first was a discourse analysis to critique
xii
current provincial policy which prescribes end-of-life care for seniors in British Columbia.
The second was a case study analysis to evaluate end-of-life care practices and current
support mechanisms available to seniors at end-of-life, as well as to informal caregivers.
This was conducted within the local health area of Vancouver-City Centre, and reviewed
the practices of two agencies providing palliative and end-of-life services: Vancouver
Coastal Health and Providence Health Care. Data was collected from reports,
documents and website text produced by both agencies on palliative and end-of-life care
service, and interviews with palliative health care professionals. A total of seven
palliative professionals were interviewed: three from Vancouver Coastal Health and four
from Providence Health Care. Lastly, interviews were conducted with four informal
caregivers from the Greater Vancouver area who have previously provided home care to
an elderly family member at end-of-life.
The discourse analysis revealed a focus by the Province of British Columbia to
substantially shift the delivery of end-of-life and palliative care away from formal,
institutionalized care into homes and communities. This is happening, however, in the
absence of sufficient direction, support or information for informal caregivers and elderly
patients as to how to achieve quality care at home. Case study analysis found that
current programs provided by government or the local health area are exclusionary
and/or insufficient, given the diverse care needs of families and seniors with life-limiting
conditions. As well, inexperienced health providers remains an issue, as many care
professionals continue to be uncomfortable in discussing death and advance care
planning with patients, while others are reluctant to make care decisions without the
approval from palliative team specialists. The interviews with informal caregivers
uncovered incongruence between current end-of-life practices and services needed,
such as help with getting to and from medical appointments, increased support in
making care decisions, and greater access to formal counselling. This only reinforces
the need for better supports for families, as well as seniors at end-of-life.
Proposed alternatives to address the policy issue were evaluated using five
criteria. To what extent the policy was able to increase access to resources, minimize
caregiver burden and meet various indicators in achieving a good death for the senior at
end-of-life, and the financial cost and implementation complexity were all considered in
the analysis of these policy options: increasing the availability and extent of publicly
xiii
funded formal home support, providing a single point of contact for elderly end-of-life
patients and their families; increasing the frequency and reach of family meetings; and
creating local, community-based services and support networks.
This study recommends that the Province of British Columbia consider providing
a single point of contact for elderly end-of-life patients and their families, as this policy
emerged as the most viable alternative to the policy problem. The role of patient or nurse
navigation, intended to expedite patient access to resources and improve coordination of
care, has been previously piloted in organizations such as the BC Cancer Agency,
Cancer Care Ontario, and Cancer Care Nova Scotia. Learnings from these pilot
programs can be used to create similar initiatives in British Columbia tailored to assist
informal caregivers and seniors diagnosed with a life-limiting condition. Future policy
should also consider increasing the availability and extent of publicly funded formal
home support, as this option showed significant potential to create greater access to
resources for informal caregivers, minimize caregiver burden, and contribute to the
ability of seniors at end-of-life to experience a good death.
xiv
1.
Introduction
Canada’s older population is projected to increase from approximately 3.8 million
people in 2000, to over 6.9 million by 2021 (Fisher et al., 2000, p. 5). This has led to
greater attention by governments and health care providers on the care needs of older
Canadians, including seniors’ access to end-of-life treatment at home. However, despite
the preference of many seniors to die at home, three-quarters of deaths in Canada still
occur in hospital or long-term facilities (Carstairs & Keon, 2009).
In recent years, governments have “[downsized] medical and hospital care,
increasingly shifting the burden of care to families” (Chappell & Penning, 2005, p. 457).
As a result, informal care, or untrained and unpaid care provided by family members,
has become the major form of care in old age, far exceeding that provided by the formal
health care system (Chappell, 2008). There are more than three million informal
caregivers in Canada (Statistics Canada, 2010) providing up to 85% of the total personal
care received by the elderly (Kane, 1990). Addressing the needs of informal caregivers
is therefore important in ensuring end-of-life seniors who desire a home death have
greater opportunities to achieve a good death in a home setting.
Shifting care provision from formal to informal systems can impact whether
seniors at end-of-life are able to experience a good death. There are many attributes
which contribute to a good death – for example, safety, respect, comfort, support, and
the dying individual’s ability to tell his or her story (Carstairs, 2010; de Jong & Clarke,
2009). In the context of home care, informal caregivers are often responsible for
assisting seniors at end-of-life with activities of daily living (Health Council of Canada
[HCC], 2012), but must also attend to seniors’ pain and symptom management,
psychosocial and emotional needs, and in preparing for end-of-life (Stajduhar & Cohen,
2009). However, persistent barriers related to employment risks, financial costs for home
care, and psychological and physiological stressors can deter informal caregivers’ ability
to help seniors at end-of-life achieve a good home death.
1
Despite the burdens and risk of distress that can befall informal caregivers, most
would rather care for their elderly family members at home versus having them die in
formal, institutionalized care. Being able to provide care to a senior at end-of-life can be
personally satisfying and rewarding (Turner & Findlay, 2012, p. 3), enhancing the
caregiver’s relationship with the individual for whom they are providing care (Fast et al.,
2002). Given the projections for Canada’s older adult population to increase in rapid
numbers over the next two decades, reliance upon caregivers by both seniors at end-oflife as well as formal health care institutions is expected to continue and increase; it is
therefore essential to ensure the well-being of caregivers, “for society and for people that
are growing older in Canada” (Jull, 2010, p. 6).
1.1. Policy Problem
Considering this evidence, the policy problem that this capstone will address is
that informal caregivers in British Columbia currently do not have adequate access to
resources which would allow them the greatest opportunity to provide quality care to an
elderly family member who wishes to die at home. Resources can include equipment,
medications, and in-home professional care assistance for the dying senior, as well as
support mechanisms that would mitigate psychological, physiological and financial
strains to caregivers in fulfilling their duties to provide quality end-of-life care in a home
setting. Adequacy of access relates to elderly patients’ and informal caregivers’ eligibility
for programs related to palliative and end-of-life care, and the ease with which both can
receive resources and support.
This study focuses on provincial policies and health service delivery within the
local health area of Vancouver-City Centre; however, this has been done being mindful
that policy recommendations would have broader implications for the provision of home
palliative care for seniors province-wide. In the sections that follow, evidence is provided
to support the position that informal caregivers are in need of greater support, which will
contribute to the ability of end-of-life seniors to experience a good death at home.
2
2.
Background
In order to fully understand how end-of-life policy has affected informal
caregivers and seniors at end-of-life, this section examines who typically undertakes the
role of informal caregiving and the burdens they face. This is followed by a closer look at
aging in Canada, and supports currently available to families and dying seniors. Finally,
a view is provided into national approaches to end-of-life policy, as well as policy
specifically within British Columbia.
2.1. Understanding Informal Caregiving
The following provides information on who undertakes the informal caregiving
role, gendered differences in caregiving, and seniors caring for seniors. The importance
of the informal caregivers’ role is also summarized here.
2.1.1.
Who are the Informal Caregivers?
Informal caregivers are “individuals who provide care and assistance for their
family members who are in need of support because of physical, cognitive or mental
health conditions” (Canadian Caregiver Coalition, 2004, p. 1). There are nearly four
million informal caregivers in Canada providing support to seniors with a short or longterm health condition (Statistics Canada, 2010). These people assist in completing
instrumental activities of daily living, such as cleaning, cooking, housework, shopping,
and transportation, and are also responsible for helping end-of-life seniors with activities
of daily living such as bathing, eating, and toileting (HCC, 2012).
Informal caregivers tend to be educated, working, and either married or in a
common-law relationship (Turner & Findlay, 2012, p. 3). In addition, informal caregivers,
prior to undertaking this role, commonly report being in very good or excellent physical
and mental health (Turner & Findlay, 2012, p. 3). These data indicate a certain
3
socioeconomic status, suggesting that those who are in reasonably stable personal
circumstances are ordinarily the ones who undertake the informal caregiving role.
Nevertheless, these people still have needs of their own which, if unmet, can jeopardize
their ability to provide home care.
2.1.2.
Gender Differences in Informal Caregiving
Gender disparities are apparent in informal caregiving, as women predominate in
undertaking this role compared to men (Cranswick & Dosman, 2008; Turner & Findlay,
2012). This has been attributed primarily to social structure, in terms of government and
health insurance arrangements (Chappell, 2011), and conventional ideology with
regards to who is the earner and who is the caregiver in the household (Walker et al.,
1998).
The delivery of care tasks is also divided along gender lines. While men are likely
to provide assistance with tasks outside of the home, such as maintenance and yard
work, women commonly undertake responsibility for providing personal care related to
hygiene and care management tasks; navigating different service delivery systems;
hiring professional help; managing finances; and organizing care schedules (Cranswick
& Dosman, 2008).
2.1.3.
Seniors Caring for Seniors
While the term “senior” is subject to alternative definitions, usage of 65 as an age
marker is a common and practical way to define the senior population (Chappell et al.,
2003). Based on this distinction, more than a quarter of caregivers in Canada are
seniors (Statistics Canada, 2010). By the nature of their relationships to individuals at
end-of-life, spouses who undertake the informal caregiving role are likely to be seniors
themselves with their own health problems (Canadian Study on Health and Aging, 1994;
HCC, 2012), more susceptible to negative aspects of caregiving than younger informal
caregivers (Jull, 2010). Depending on the illness of the elderly individual requiring care,
the responsibilities of caregivers can be intense, frequently unpredictable, and
uncontrollable (Stephens et al., 1991); this creates a risk to seniors caring for seniors, as
4
pre-existing health conditions of older caregivers can be exacerbated as a result of the
stresses of caregiving (de Frias et al., 2005).
2.1.4.
The Importance of the Informal Caregivers’ Role
Informal caregiving complements that of formal social and health care systems,
and allows for seniors who are ill and at end-of-life to remain in their homes and
communities for as long as possible (HCC, 2012; Jull, 2010). While a third of caregivers
typically provide care for less than a year, about an equal proportion do so for at least
five years (Statistics Canada, 2010; Turner & Findlay, 2012, p. 2); this is likely a result of
care provision having evolved from that of chronic conditions (Fast et al., 2002).
However, studies have shown that these situations allow for the informal caregiver and
the person receiving care to strengthen and enhance their relationships (Fast et al.,
2002), when not much time may be left for the individual at end-of-life; the time spent
caregiving can therefore be fulfilling for both parties.
The service that informal caregivers provide results in a significant cost savings
to the formal health care system. One study conservatively estimates that informal
caregivers provide approximately $25 billion of care per year to Canadian seniors
(Hollander et al., 2009, p. 48). This takes into account the types of services being
provided by middle-aged and older unpaid caregivers, as well as the average hours per
week these individuals may be providing home palliative care.
2.2. Burdens Faced by Informal Caregivers
Caregiver burnout, a common consequence when informal caregivers are
insufficiently supported, can result in increased risk of both caregivers and individuals at
end-of-life having to be admitted to formal institutions for medical care (Canadian
Institute for Health Information [CIHI], 2010; HCC, 2012). This section examines burdens
faced by caregivers, such as risks to their employment and earning potential, as well as
stressors that contribute to caregiver burnout: the financial costs of caregiving as well as
psychological and physiological strain.
5
2.2.1.
Risks to Employment and Earning Potential
Many informal caregivers undertake the responsibility freely out of a desire to
help a family member at end-of-life. However, in doing so, caregivers must often leave
their place of employment if unable to negotiate flexible working arrangements with an
employer. Conflict arising between work and caregiving responsibilities can threaten
caregivers’ current and future income security (Fast et al., 2002) in the form of reduced
and foregone income, lost benefits, reduced pension, and reduced savings investments
(Keating et al., 2013). Common impacts to work as a result of caregiving include lost
days of work or taking periods or leave (Keating et al., 2013). Recent data indicate that
over 520,000 employed caregivers missed at least one day of work per month to provide
care; collectively, this amounts to nearly 1.5 million work days per month lost to
caregiving responsibilities (Fast et al., 2011, p. 1). Further, an American study estimates
that informal caregivers providing care to chronically or terminally ill individuals lose, on
average, over $566,000 USD in wages and retirement income over their lifetimes
(MetLife Mature Market Institute, 1999, p. 6).
Gendered differences in caregiving can also result in disparities with respect to
lost employment and earning potential. Evidence shows that women have a greater
propensity “to accommodate their employment to caregiving, to give up work or quit a
job…to incur higher out-of-pocket expenses…given [that Canadian] women have lower
average incomes than do men, this cost evidence suggests a new double jeopardy of
being female and a caregiver” (Keating et al., 2013, p. 8). In addition, female caregivers
are significantly more likely than men to miss full days of work, retire early, quit or lose
their paid jobs, or turn down a job offer or promotion (Fast et al., 2011).
2.2.2.
Personal Financial Costs
The trend towards de-institutionalized care for seniors has also allowed for costs
to shift away from the public sphere to those of informal caregivers (Chappell & Penning,
2005). More than 40% of informal caregivers pay out-of-pocket for home care services,
incurring expenses related to transportation, housing, food, and other home care-related
costs (HCC, 2012, p. 29). This could consist of medications, which typically constitute a
6
large proportion of expenses, or costs in accompanying care recipients to specialized
treatments or consultations (Keating et al., 2013).
Each province is also responsible for administering its own budget for home care
services, resulting in variation and eligibility criteria for home care and palliative
programs (HCC, 2012), such as uneven distribution of services and considerable
differences between provinces with respect to service mix (Carstairs & Beaudoin, 2000).
Limited provincial funding can result in capped hours for professional help with home
palliative care (HCC, 2012), forcing caregivers to spend out-of pocket for care not
covered, but needed, by the individual at end-of-life. Nationwide, only 14% of caregivers
of spouses and 5% of those providing care to parents accessed funding provided by
government programs; however, only 3% of family caregivers in 2012 received a federal
tax credit for which they were eligible, despite the fact that 42% of spousal caregivers
and 28% of caregivers of parents would have liked more help than they received
(Turcotte, 2013, p. 1).
2.2.3.
Psychological and Physiological Strain
More than half of caregivers in Canada report having encountered difficulties and
challenges in their care duties and, when asked about the most negative aspects of
caregiving, 17% reported that it was emotionally demanding; 12% said that, because of
caregiving, they did not have enough time for themselves or family; 10% said it created
stress; and 7% reported fatigue (HCC, 2012, p. 28; Statistics Canada, 2010; Turner &
Findlay, 2012, p. 3). The majority of caregivers providing care to a spouse also live in the
same home as the person receiving care (Turcotte, 2013, p. 3); this type of environment
can exacerbate emotional stress if caregivers are unable to effectively experience
respite from their duties.
While providing informal care can be stressful, not being able to care for a family
member at end-of-life can also be a cause of psychological strain. Many informal
caregivers, upon committing to provide home care for a senior at end-of-life, are
steadfast in their efforts to keep this promise; however, caregivers often undertake this
role amongst “a lack of preparedness for caregiving, difficulty with accessing
professional support and information, and frustration with the inadequate help they
7
receive” (Topf et al., 2013, p. 876). This can create complicated bereavement issues for
caregivers when they are unable to fulfill their promise to provide end-of-life home care,
indicating a need to ensure reasonable support mechanisms are available to caregivers
not only while providing end-of-life home care, but also from time of diagnosis until after
the elderly individual has passed on.
2.3. An Aging Nation
The current state of Canada’s aging population, the cost implications of an
increasingly older population on the public health care system, and what constitutes a
good death are detailed below.
2.3.1.
Seniors and End-of-Life Care in Canada
End-of-life care “can be understood as a continuum of events starting with the
diagnosis of one or more serious illnesses or injury” (Schuklenk et al., 2011, p. 10). In
seniors, chronic conditions and multiple morbidities are often the case; this creates
challenges in accurately predicting illness trajectory and determining care planning
(Fisher et al., 2000). Canadians, however, are becoming more aware of end-of-life care
issues; the value of providing appropriate and compassionate support to those at end-oflife, as well as those providing informal care, is therefore growing in recognition (Health
Canada, 2007). This growing interest indicates an opportunity to ensure Canadians have
access to accurate information about their options and the resources available to them
for end-of-life.
Canada, however, lags behind other developed nations in end-of-life care
delivery, ranking ninth out of 40 countries overall in its ability to provide a basic end-oflife health care environment1; the United Kingdom, Australia and New Zealand rank
1
The indicators for basic end-of-life health care environment include: political instability risk; GDP
per head; an old age dependency ratio; life expectancy at birth; health care spending as a
percentage of GDP; number of hospital beds per 1,000 non-accidental deaths; number of
doctors per 1,000 non-accidental deaths; social security expenditure on health; and national
pension scheme coverage (Economist Intelligence Unit, 2010, p. 36)
8
amongst the top three (Economist Intelligence Unit [EIU], 2010, p. 11). With the mortality
rate projected to double between 2008 and 2056 (Carstairs, 2010, p. 10; Statistics
Canada, 2013), and each death in Canada expected to affect the well-being, on
average, of five other family members (Quality End-of-Life Care Coalition of Canada,
2010, p. 2), it is vital to address deficiencies in end-of-life health service delivery in order
to mitigate impacts to families.
2.3.2.
The Cost of Dying
Greater demands on the health care system are expected as a result of
Canada’s aging population. Seniors account for less than 14% of the population, but
consume nearly 44% of the total health care budget (CIHI, 2011a, p. 17), and constitute
40% of acute hospital stays (CIHI, 2011b, p. 28). In British Columbia, hospital spending
represents, on average, 80% of total measured health costs in the last year of life
(Cunningham et al., 2011, p. 5). This is in-line with findings which reveal health
expenditures increase sharply for older British Columbians, up to over $22,000 per
person for those over 90 years of age (Lee, 2006, p. 14). Further, one-third to one-half of
a typical person’s health care expenditures often occurs in the final year of life (Lee,
2006, p. 5). Overall, as people are living longer with chronic conditions, it is expected
that the cost of end-of-life care as a proportion of overall health care spending will
increase over time (EIU, 2010, p. 25).
Despite these findings and the “widespread belief that healthcare systems are
spending more and more to provide intensive and aggressive care to older patients living
out their final months” (Canadian Health Services Research Foundation [CHSRF], 2003,
p. 1), there is evidence which counters that the proportion of health care spending for
seniors has remained stable over the last 10 years, increasing only marginally (CIHI,
2011a, p. 17). Advances in medical technology can significantly lower the intensity of
treatments and, therefore, the overall cost per patient (Evans et al., 2001). Additionally,
improved planning for end-of-life, including greater use of advance directives, allows
older people and their families to choose suitable, and personally acceptable, levels of
medical intervention in the case of serious illness – which can help to decrease overall
end-of-life health care costs (Lee, 2006).
9
Regardless of the conflicting evidence which postulates that the cost of dying
creates an increased strain on the system, there exists a value-based question around
whether public spending on the cost of dying is “too high” (CHSRF, 2003, p. 2).
Advocates of end-of-life care often refer to evidence that increased palliative care,
community and home care can all reduce costs associated with in-patient hospital stays
(EIU, 2010); home care services in British Columbia alone are estimated to cost one-fifth
as much as acute care services (Lee, 2006, p. 15). But research suggests that “this
trend toward de-institutionalization is less about the stated preferences of seniors and
more about the organization of care, asserting that institutional settings have higher
costs associated with them than do services provided through home care” (CIHI, 2011b,
p. 90). In addressing these issues, policy implications may therefore arise as our society
decides how to balance formal and informal avenues of end-of-life care in order to
legitimize public spending on the cost of dying (CHSRF, 2003).
2.3.3.
What is a Good Death?
Home care evolved during the 1970s out of increased fiscal pressures to reduce
demand on hospital-based care (Dudgeon & Kristjanson, 1995), but research at that
time also showed that the suffering of dying patients was intensified by the
depersonalization of the general hospital ward, where patients were isolated in private
rooms, visited infrequently by medical staff and were often unable to have their
emotional needs met (Ajemian & Mount, 1980). This has contributed to the increasing
desire of seniors to age in place and remain in their homes for longer. Evidence has
shown that seniors perceive greater satisfaction with home care versus other care
settings (Miller, Hollander, & MacAdam, 2008) and about 85% of older Canadians would
prefer to remain in their present homes, even if their health conditions change over time
(Canada Mortgage and Housing Corporation, 2008, p. 2).
While remaining at home may provide a sense of independence, this can place
seniors at risk of being adversely affected in terms of financial status, degree of isolation,
and overall reduced well-being (CIHI, 2011b), particularly if they are trying to manage on
their own. Quality of life for seniors can be achieved in a home setting, but requires
community support, appropriate housing, and informal and/or formal care (CIHI, 2011b).
10
As well, a number of indicators are understood to help ensure seniors at end-oflife experience a good death. These include safety, respect, comfort, support, and the
ability to tell their story (Carstairs, 2010; de Jong & Clarke, 2009). Seniors require a safe
environment – a place where their physical and emotional needs can be met (Carstairs,
2010). This must also take into account safety issues encountered in home care, such
as difficulties faced by untrained individuals in following health care regulations (HCC,
2012). In preparing for death, advance care planning, while not a legally required
practice in the province of British Columbia, can help to clarify each person’s
preferences regarding end-of-life care and confirm that “family, friends and/or health
care providers know your wishes, and can ensure these wishes are followed” (British
Columbia Ministry of Health [MoH], 2013e, p. 2). Psychosocial, spiritual and emotional
supports are also key factors which can promote a good death, as issues of faith and
spirituality are seen as integral to overall healing at end-of-life (Steinhauser & Clipp,
2000). Telling stories of family (de Jong & Clarke, 2009) and having someone listen
(Carstairs, 2010) are also important, as this fulfills the need of those dying to “contribute
to the well-being of others” (Steinhauser & Clipp, 2000, p. 828).
The ideal way in which one person wishes to die may vary from what others want
at end-of-life but for many, maintaining the quality of life in the dying process is
contingent upon the markers above. Ensuring enough direction and guidance for
informal caregivers can help them provide a good death at home and ensure quality of
life for dying seniors (Ross et al., 2002).
2.4. Current Supports Available to Informal Caregivers and
Seniors at End-of-Life
Both the federal government and the Province of British Columbia have
established programs to assist informal caregivers in providing care for seniors who wish
to die at home. This section details the main government programs currently available to
caregivers, such as the Employment Insurance Compassionate Care Benefit and the BC
Palliative Care Benefits Program, and the limitations of those programs.
11
2.4.1.
Canada’s Employment Insurance Compassionate Care
Benefit
The Government of Canada’s Compassionate Care Benefit program aims to
assist family members who are employed and “have to be away from work temporarily to
provide care or support to a family member who is gravely ill with a significant risk of
death within 26 weeks” (Government of Canada, 2013). However, the Compassionate
Care Benefit is limited to a maximum six-week period to those who are currently
employed; this can be inadequate, given the long-term nature of many life-limiting
illnesses and common palliative prognosis of six months or less (Robinson & Segal,
2013).
While it has been established that women predominantly undertake the
caregiving role, women are the least likely to be eligible for the Compassionate Care
Benefit due to their propensity, versus men, to be stay-at-home parents and part-time
workers (Giesbrecht et al., 2010). Women make up the majority of claims for this
program; however, on average they receive lower weekly benefit payments versus men
due to more limited salaries (Canada Employment Insurance Commission, 2013). This
suggests disparities in providing benefits under this program based not only on
employment status and relation to the individual at end-of-life, but gender differences, as
well.
2.4.2.
The BC Palliative Care Benefits Program
This program offered by the British Columbia Ministry of Health “supports B.C.
residents of any age who have reached the end stage of a life-threatening disease or
illness and who wish to receive palliative care at home” (MoH, 2013a). It does this by
offering medical supplies and equipment, and medications under the PharmaCare BC
Palliative Care Drug Plan. This plan covers 100% of the eligible costs of prescription
drugs and selected over-the-counter drugs needed for treatment at home; however,
coverage is restricted to medications listed in the Plan P (Palliative Care Drug Plan)
formulary, while equipment is limited to “some of the same medical supplies and
equipment they [patients] would get if they were in hospital” (MoH, 2012a, p. 2).
Therefore, for seniors requiring specific medications not under the Plan P formulary, or
12
who would benefit from certain equipment not covered by the program, these items
would have to be paid for either by the patient or informal caregiver.
2.5. Policy Context
Provided here is a description of work undertaken by the Senate of Canada on
end-of-life issues, and federal approaches to end-of-life care. This is followed by a look
the current end-of-life policy framework in British Columbia.
2.5.1.
The Senate of Canada
Since the mid-1990s, the Senate of Canada has worked to keep palliative and
end-of-life care issues on the political agenda. In 1995, it tabled a report highlighting
considerations for palliative care, education and training, research, guidelines and
standards, advance directives, and legislative initiatives (Carstairs & Beaudoin, 2000).
Five years later, it recommended that the federal government work in collaboration with
the provinces to develop a national strategy for end-of-life care (Carstairs & Beaudoin,
2000). In 2005, the Senate tabled a third report on palliative care which looked at the
progress to implement the recommendations outlined in the previous reports, and
included 10 additional recommendations – specifically, in the areas of national strategy;
patient and caregiver support; training and education for formal and informal health care
providers; government and citizens working together; and planning for the future
(Carstairs, 2005). The latest report, published in 2010, focuses on the current state of
palliative care in Canada, why palliative care is important, what progress has been made
and what still needs to be done. For informal caregivers, this means improving respite
care; recognizing the importance of grief and bereavement services; minimizing
excessive financial burden; ensuring sufficient information and education; providing
adequate home care services; and making work options available (Carstairs, 2010).
While many of the Senate’s recommendations remain relevant to improving endof-life care today, progress in the areas listed above has been insubstantial. Limited
improvements have been made specifically in the areas of income and job protection,
13
palliative educational opportunities for health care providers, and public education
around advance care directives (Macdonald, 2012).
2.5.2.
The Federal Government and End-of-Life Care
While the Senate of Canada has made efforts to raise awareness around the
importance of end-of-life care issues, no national policy currently exists to explicitly
address the provision of home care. The 2004 Health Accord identified home care as a
priority initiative, and acknowledged that improving access could “improve the quality of
life for many Canadians by allowing them to be cared for or recover at home”
(Government of Canada, 2004). This included agreement by First Ministers to provide
increased coverage for short-term acute home care and end-of-life care, but no national
strategy. However, despite significant investments over the last decade, “access to care
has not substantially improved and patients are not reporting that their care is better
integrated or more patient-centred” (HCC, 2014, p. 49). Canada’s performance in health
outcomes also continues to lag behind many other high-income nations, and access to
high-quality health services remains inequitable (HCC, 2014). While home care has
been historically recognized by the federal government, a continued absence of a
national policy to coordinate intergovernmental efforts in home care can only serve to
perpetuate the challenges for Canadians with respect to achieving quality care at end-oflife.
2.5.3.
British Columbia’s End-of-Life Framework and Action Plan
In British Columbia, it is projected that the percentage of seniors 80 years of age
and older will grow from 4.4% of the population in 2012 to 7.4% of the population by
2036 (BC Stats, 2012, p. 9). As well, the prevalence of chronic conditions is expected to
increase nearly 60% over the next 25 years (MoH, 2007). This will have substantial
implications for health service use in the province and the actions taken to provide for an
aging population.
In 2006, the Government of British Columbia released A Provincial Framework
for End-of-Life Care. This framework was designed to give “health authorities, service
providers and community groups a basis for planning exemplary end-of-life care
14
services” (MoH, 2006b, p. i). The framework also acknowledges the importance of being
able to provide those at end-of-life with enough support to die at home, should that be
the individual’s wishes (MoH, 2006b). The Provincial End-of-Life Care Strategy and
Action Plan for British Columbia, which evolved out of the 2006 framework, outlines
broad end-of-life policy in British Columbia and provides three priorities for end-of-life
care in British Columbia:
• Priority 1: Redesign health services to deliver timely coordinated end-of-life
care;
• Priority 2: Provide individuals, caregivers and health care providers with
palliative care Information, education, tools and resources; and
• Priority 3: Strengthen health system accountability and efficiency.
(MoH, 2013f, pp. 13-15)
Although British Columbia has formulated this direction for end-of-life care, it is
important that it show leadership in delivering and improving these services. The
reasons for this are explained below.
2.6. Moving Forward with Provincial Support for Informal
Caregivers in Providing End-Of-Life Care for Seniors
Federal and provincial governments have long been aware of the need to
address end-of-life policy issues in Canada. However, a national strategy for end-of-life
care remains absent, contributing to a lack
in cohesion, coordination and
comprehensiveness in government efforts. Devolving responsibility for home care to the
provinces has only exacerbated issues of access to high-quality health services (HCC,
2014), with variability in the delivery of end-of-life care and support mechanisms (HCC,
2012) making it difficult for informal caregivers and dying seniors to achieve a good
death at home.
Existing programs are not doing enough to assist families and elderly patients.
Financial, psychological and physiological burdens to informal caregivers are well
documented (HCC, 2012), as are the risks to their employment and earnings (Fast et al.,
2002; Keating et al., 2013; MetLife Mature Market Institute, 1999; Turcotte, 2013), yet
15
current programs intended to help families in caring for dying seniors bear significant
limitations (Giesbrecht et al., 2010; Robinson & Segal, 2013). This devalues the service
informal caregivers are providing, not only to the individuals they are caring for, but also
in their contributions to relieve costs to the formal health care system.
British Columbia’s Ministry of Health has acknowledged “that many of the people
who currently die in hospital could, with appropriate preparation and support, die at
home” (MoH, 2006b, p. 1). For informal caregivers, greater preparedness with regards to
the extent of caregiving demands, more equitable access to programs, better ways to
navigate the various health service systems, and increased support from professional
health care providers as seniors’ conditions worsen are all possible ways to improve
their ability to fulfill caregiving duties. However, little remains known about which
interventions are most effective in supporting informal caregivers in their role (Stajduhar,
2013). In order to identify the most valuable interventions and supports, this research
seeks to determine what resources are currently of most use to caregivers, which
programs are in need of improvement, and what is currently absent but needed by
caregivers to mitigate their burdens and ensure seniors at end-of-life can experience a
good home death. The following sections outline the research methodology used to
uncover and determine how to actualize effective support mechanisms.
16
3.
Methodology
In order to determine what policy options can best address the policy problem
that informal caregivers in British Columbia currently do not have adequate access to
resources which would allow them the greatest opportunity to provide quality care to an
elderly family member who wishes to die at home, the overall purpose of this research
was to determine how to improve access to supports through policy recommendations.
This section describes the research questions used in this study, as well as the
approach used to answer these questions.
3.1. Research Questions
Given the policy problem, this study was guided by two research questions in
determining how to best address this issue. With respect to achieving quality care at
home, the first research question in this study was: in what ways do current palliative
care policies set the context for end-of-life seniors to have a good death at home?
Because the role of informal caregivers is crucial in enabling dying seniors to experience
a good death at home, the research also sought to answer a second question: in what
ways are informal caregivers supported in their role to provide quality care to an elderly
family member who wishes to die at home?
3.2. Research Approach
In order to answer these questions, the research methodology for this project
comprised three main components:
• A discourse analysis to critique current provincial policy aimed at prescribing
particular end-of-life care practices in relation to seniors and home care;
• A case study analysis to evaluate current support mechanisms available to
seniors at end-of-life as well as their informal caregivers; and
17
• Interviews with individuals who have provided home care to an elderly family
member at end-of-life to assess support mechanisms.
Provincial policies focused on end-of-life care will have an impact on service delivery
province-wide. Therefore, in order to better understand the impacts of policy and how
this translates into practice, this capstone concentrated on end-of-life home care and
supports offered within the health service delivery area of Vancouver and, specifically,
the local health area of Vancouver-City Centre.
Figure 1.
Local Health Area 161 Vancouver-City Centre
Note: BC Stats, 2013b, "161 City Centre"
With a population of nearly 670,000 people as of 2012, and a population growth
rate of over 2% between 2011 and 2012 (BC Stats, 2013a, p. 2), the city of Vancouver
ranks third highest in population growth in British Columbia. Situated within the larger
municipality of Vancouver, the local health area of Vancouver-City Centre has been
chosen in this study to represent urban-dwelling residents, as this large population base
18
allows for densification of end-of-life care services and supports for informal caregivers.
Containing the scope of this project within the boundary of Vancouver-City Centre
allowed for specific conclusions to be drawn which will have greater relevance for this
particular local health area, but also for other highly populated regions in British
Columbia that have a concentration of services for seniors and their families.
Table 1 provides an overview of the research questions addressed by each
research method. The research methods are described below.
Table 1.
Overview of Research Methods Used to Answer Research Questions
Research Method
Research Question #1
Research Question #2
In what ways do current palliative care
policies set the context for
end-of-life seniors to have a good death
at home?
In what ways are informal caregivers
supported in their role to provide quality
care to an elderly family member who
wishes to die at home?
Critical Discourse
Analysis
X
Case Study Analysis
X
X
Interviews with
Informal Caregivers
3.2.1.
X
Critical Discourse Analysis: Provincial End-of-Life Policies
This study highlights a need to understand how provincial policies focused on
end-of-life care in British Columbia set the context for seniors to have a good death at
home, as this serves to inform the role and responsibilities of informal caregivers in
fulfilling those wishes. A critical discourse analysis was employed to uncover how
language has been used to both frame the issue as well as position how end-of-life care
will be addressed. Analysis was conducted by considering the three dimensions of the
critical discourse analysis framework: the discursive practice of written language texts to
undercover underlying messages; a text analysis to contextualize the production,
distribution and consumption of text; and social practice, exploring discursive events as
instances of power and ideology (Fairclough, 1995). More on the critical discourse
analysis used in this study is provided in Appendix A.
19
The provincial policy documents used in the critical discourse analysis were
selected based on their relevance to seniors at end-of-life and their intent to create a
health care environment conducive to home care for seniors at end-of-life. Documents
were also chosen based on their recent and direct application to end-of-life care delivery
in British Columbia and, therefore, service delivery within the local health area of
Vancouver-City Centre. The British Columbia Ministry of Health documents and text
used in the critical discourse analysis were:
• A Provincial Framework for End-of-Life Care (2006b);
• The Joint Protocol for Expected/Planned Home Deaths in British Columbia
(2006a);
• The Provincial End-of-Life Care Action Plan for British Columbia (2013f); and
• Website text focused on End-of-Life Care (2013c), Expected/Planned Home
Deaths (2013d), and Caring for Seniors (2013b).
3.2.2.
Case Study Analysis
While learning how dominant discourses in policy can influence the delivery of
end-of-life care across the province, this does not contribute to the understanding of how
individual health authorities execute government direction. By conducting a case study
analysis, it was possible to examine how palliative services are provided to dying seniors
as well as how informal caregivers are supported in their efforts specifically within the
local health area of Vancouver-City Centre. Examining cases within this local health area
made it possible to assess whether practices resulting from current provincial end-of-life
policies are effective and where improvements can be realized.
Case study analysis allows for exploration of individuals and organizations,
simple through complex interventions, relationships, communities, and programs (Yin,
2003). In this study, the two cases under examination were Vancouver Coastal Health
and Providence Health Care, as these are the organizations situated within the local
health area of Vancouver-City Centre. An evaluation of individual practices applied by
these organizations to support informal caregivers and seniors at end-of-life was
conducted using specific study propositions and the following criteria: adequate
preparation and advance care planning; effective pain and symptom management;
provision of psychosocial, spiritual and bereavement support; support for informal
20
caregivers; and sufficient financial support. This was followed by a cross-case
comparison of practices employed by both agencies. A brief overview of these two cases
is provided in Table 2, while data sources, or units of analysis, have been summarized in
Table 3 below. A fuller description on the case study analysis employed in this study is
provided in Appendix B.
Table 2.
Overview of Cases Used in Analysis
Case #1: Vancouver
Coastal Health
Case #2: Providence
Health Care
General description
Serves 25% of BC’s population or
over one million people including
the residents of Vancouver,
Richmond, the North Shore and
Coast Garibaldi, Sea-to-Sky,
Sunshine Coast, Powell River,
Bella Bella and Bella Coola.
Providence Health Care provides
health care services to patients
and residents from British
Columbia. Providence falls within
the Vancouver Coastal Health
region but is governed by its own,
independent Board of Directors.
Full and part time staff
13,000
Approximately 9,000
Physicians
2,500
Approximately 1,000
Researchers
Over 600 principal investigators,
graduate, and post-graduate
trainees conduct both clinical and
basic science research
Approximately 200
Volunteers
5,000
Approximately 1,600
Home care nursing visits per
day (on average)
891
-
Home nursing visits per year
Over 199,000
-
Home support hours per year
Over 1.9 million hours
-
Residential care client visits per
day (on average)
6,240
-
Daily visits with assisted living
tenants (on average)
891
-
Sources: (Providence Health Care [PHC], 2013c; Vancouver Coastal Health [VCH], 2013e; Vancouver
Coastal Health Research Institute [VCHRI], 2012)
21
Table 3.
Case Study Units of Analysis
Cases
Units of Analysis
Case #1: Vancouver Coastal
Health
• Vancouver Coastal Health’s Community Engagement Report on a
Regional Palliative/End-of-Life/Hospice Care Services Strategy
(Tolson & Evoy, 2005);
• Website text on Home and Community Care (VCH, 2013b); and
• Interviews with palliative care professionals working within Vancouver
Coastal Health.
Case #2: Providence Health
Care
• Document on Palliative Care at St. Paul’s Hospital (PHC, 2013b);
• Website text on End-of-Life Care (PHC, 2013a); and
• Interviews with palliative care professionals working within
Providence Health Care.
As one data source used in the case study analysis, three palliative health care
professionals from Vancouver Coastal Health and four from Providence Health Care
were interviewed between November 2013 and January 2014. Interviews covered a
broad set of topics, including information needs, impacts to caregivers’ personal and
work lives, and the role of health professionals. Data was analyzed using thematic
analysis, “a method for identifying, analysing and reporting patterns (themes) within
data” (Braun & Clarke, 2006, p. 79). An example of the schedule used for interviews can
be found in Appendix C.
3.2.3.
Interviews with Informal Caregivers
Evaluating the needs of informal caregivers was done by speaking with family
members who provided home care to a senior at end-of-life. Given the potentially
sensitive nature of the research topic, interviews were conducted with informal
caregivers not currently providing care, but who had done so previously. A total of four
informal caregivers were interviewed from the greater Vancouver area between
November 2013 and January 2014 to discover their individual experiences with
caregiving, the specific burdens they encountered, and how their needs were or were
not met by the health authorities. Analysis of the data obtained through interviews with
informal caregivers was conducted using thematic analysis. The recruitment, interview
format and analysis used in the interviews with informal caregivers are more fully
described in Appendix D. Interviews included discussions on caregivers’ relationship to
22
the senior at end-of-life, their day-to-day tasks, and impacts to their personal and work
lives. An example of the interview schedule can be found in Appendix E.
All necessary ethical approvals were obtained prior to beginning research; these
are detailed in Appendix F. The section that follows provides a summary and discussion
of the findings resulting from the research approach.
23
4.
Research Findings
Presented here are the findings for each component of the research
methodology: the critical discourse analysis of provincial end-of-life policies; the case
study analysis of end-of-life care practices at Vancouver Coastal Health and Providence
Health Care; and interviews with former informal caregivers who have provided home
care to a senior at end-of-life.
4.1. Critical Discourse Analysis: Provincial End-of-Life
Policies
The discursive practice, text analysis, and social practice findings from the critical
discourse analysis are discussed below.
4.1.1.
Discursive Practice
Discourse of Knowledge and Goals: A discursive analysis of British
Columbia’s end-of-life policies confirms that the Province of British Columbia is
interested for seniors to experience a good home death. However, actions outlined in
meeting end-of-life care goals and priorities are described very generally without
providing any specific direction. While text from the Provincial End-of-Life Care Action
Plan for British Columbia has been presented intentionally as a guide for “health
authorities, physicians, health care providers, and community organizations in planning
integrated primary and community care services” (MoH, 2013f, p. 4) and to allow for
flexibility in interpreting the action items, it also creates a high degree of variability and
lack of accountability. For example, one priority outlined in the Provincial End-of-Life
Care Action Plan is to “provide individuals, caregivers and health care providers with
palliative care information, education, tools and resources” (MoH, 2013f, p. 14), yet the
actions in relation to this goal do not specifically describe the ways in which knowledge,
24
awareness and information will be shared or disseminated. Further, only one of the four
actions highlighted in meeting this goal references seniors and informal caregivers, and
does so only vaguely: “increase public knowledge and awareness of palliative care as an
approach to care that improves the quality of life for both the patient and the family at
any stage in a serious illness” (MoH, 2013f, p. 14). This lack of specificity and direction
in required actions detracts from the policy’s direction to achieve the outlined goals.
Discourse of Integration: Provincial policy documents addressing end-of-life
care for seniors in British Columbia exhort a need for better integration of care and
services, yet policies are presented in such a way that is not inclusive of seniors and
caregivers. For example, the Provincial End-of-Life Care Action Plan uses 17 instances
of the term, “integrate” e.g. integrat* in describing the need for better integration in endof-life health service delivery. In addition, there are eight occurrences of the word, “team”
– as in, team of doctors, health teams, care teams, consultation teams, etc. But the
policy also emphasizes a need to provide “individuals and families…with information and
resources to effectively manage their own care journey” [emphasis added] (MoH, 2013f,
p. 14). This excludes patients and families from the care teams of which they should be
a part. Additionally, the information needs of seniors and informal caregivers are situated
as secondary to the needs of professional caregivers. One action item relates to
promoting “support for end-of-life care education for family physicians, specialists and
health care professionals” [emphasis added] (MoH, 2013f, p. 14) with no mention of
dying seniors and the family providing informal care. Focusing only on the educational
needs of professional providers minimizes the need for dying seniors and informal
caregivers to be better educated in end-of-life care issues, and excludes them from the
discussion around the supports they require.
Discourse of Home Death Management: In contrast to the Provincial End-ofLife Care Action Plan, the Joint Protocol for Expected/Planned Home Deaths in British
Columbia is a comprehensive document, detailing the “process and procedures involved
in managing anticipated natural home deaths in the context of a terminal illness (MoH,
2006a, p. 1). While this document is “intended for health care professionals and
agencies involved in expected/planned home deaths” (MoH, 2006a, p. 1), it contains a
wealth of information useful also for seniors at end-of-life as well as their families. But by
focusing solely on the involvement of professional providers, the families’ role in
25
managing a planned home death remains unacknowledged. This, again, excludes
seniors and caregivers and instead focuses on ensuring that knowledge and information
around “protocol” and “procedure” is available primarily for agencies and professional
providers. Positioning end-of-life care policies and practices in this way disregards the
need for information often cited by individuals at end-of-life and their families at a time
when information needs are at their greatest.
Discourse of Partnerships: Lastly, provincial policies reference different
partnerships in the delivery and coordination of end-of-life care services. Partners such
as the British Columbia Ministry of Health, the BC Medical Association, Michael Smith
Foundation for Health Research, the Provincial Health Services Authority, BC Cancer
Agency, and BC Renal Agency are listed in the Provincial End-of-Life Care Action Plan,
while the Provincial Framework for End-of-Life Care mentions partnerships with the
Canadian Hospice Palliative Care Association and Canadian Council on Health Services
Accreditation. Naming such agencies specifically while being non-committal with regards
to actionable items is indicative of policy makers’ desire to exemplify the work that has
been done in partnership with these agencies, without actually having assigned
responsibility to any organization in fulfilling the actions needed to ensure quality end-oflife care in British Columbia. Further, mention is made neither of funding sources, nor
who will be responsible for leading these partnerships.
Overall, while the intent of the policies may be well-meaning, the analysis of
discursive practices reveals that the dominant discourses uphold the importance of
meeting and addressing the information and educational needs of palliative health care
professionals versus that of dying seniors and informal caregivers. While it is important
to ensure professional caregivers are trained to perform their jobs well, disregarding the
information needs of informal caregivers restrains their ability to provide quality care to
seniors who wish to die at home. This approach is in contrast to other jurisdictions, such
as the United Kingdom, whose policies are designed to allow the public to contribute
significantly to health care development and delivery (National Institute for Health and
Care Excellence, 2013), thus ensuring services are of greatest relevance for patients.
Policies that would be of most value would describe how seniors at end-of-life
and their informal caregivers can better intersect with professional care providers. A
26
more intentional focus by government to create greater accountability in its policy
direction and action plans, as well as consider seniors and informal caregivers as part of
the greater palliative health care team, are ways in which end-of-life care can be
advanced in a more inclusive and progressive way.
4.1.2.
Text Analysis
A textual analysis of provincial end-of-life policies reveals British Columbia’s
desire to alter service delivery and focus on community-based services. However, this is
done primarily at the exclusion of patients and families from the conversation. Further,
policies do not provide data to reinforce how the direction will benefit seniors at end-oflife. In the Provincial End-of-Life Care Action Plan for British Columbia, the terms “shift”
and “change” are used a total of 11 times. Specifically, the emphasis is on shifting away
from hospital care towards integrated health services and services based in the
community. For example, the document states the following:
These strategies provide a foundation of meaningful support for the
significant shift in clinical practice and service planning required to
implement a proactive, integrated approach to end-of-life care [emphasis
added] (MoH, 2013f, p. 11).
Through integrated primary and community care strategies, the Ministry
of Health and health authorities are working with physicians and other
health care providers, community organizations and researchers to
redesign and realign services in partnership with patients. An integrated
system of primary and community care offers improved patient
experience of care in community based settings with timely access to
quality hospital services when needed [emphasis added] (MoH, 2013f, p.
10).
These two statements, when viewed together, imply a number of things for policy
direction. First, the way services are delivered requires substantial change; this is
evidenced in the way “significant” has been used along with the need to “redesign” and
“realign” services. As well, the emphasis on “community” indicates a focus on improving
services to seniors and families outside of hospital settings. Website text describing
palliative programs also focuses on what services can be accessed to receive “care at
home.” This use of text points to the government’s desire to move away from costly
27
services provided in institutionalized settings toward community and home-based care
settings.
While a greater shift towards care in the community may serve to focus efforts on
home care, this, along with more proactive identification of those requiring palliative
care, does not necessarily translate to better care at home for seniors at end-of-life. In
order to achieve quality home care, dying seniors and informal caregivers need to be
well prepared and supported for an expected home death. However, broad statements
are presented in the policies without any evidence to prove expected outcomes; further,
they do not clearly indicate how issues will be addressed. For example, the Provincial
End-of-Life Care Action Plan states that:
As hospital staff identify people with palliative and end-of-life care needs
more readily, and referrals to appropriate community based services are
made, more individuals will receive quality end-of-life care at home. This
will support improved quality of life, patient and family engagement in the
community [emphasis added] (MoH, 2013f, p. 5).
Strategies such as these may be intended to improve deinstitutionalized palliative care,
but focus primarily on hospital staff and other professional providers with very minimal
mention of how informal caregivers and dying seniors are to be engaged and involved
with regards to their care and support needs. Being dismissive of these individuals
restrains the overall system’s ability to ensure quality care can be achieved for elderly
patients at end-of-life.
Based on the textual practices analyzed in the selected documents, the Ministry
of Health has provided little information in its policies to clarify how health partners and
professional agencies will interface with dying seniors and their families; this is the case,
despite a political desire to significantly shift services away from the hospital to
community settings. Forcing significant shifts in end-of-life care delivery in the absence
of reasonable and specific actions to better support informal caregivers ultimately
restricts informal caregivers’ efforts and does little to create a system where a good
home death for end-of-life seniors can be achieved.
28
4.1.3.
Social Practice
An exploration of the policies’ social practices reveals that seniors at end-of-life
and their informal caregivers are not necessarily positioned as the primary beneficiaries
of the direction put forward by government. Given the aim to “increase individual,
community and health care services’ capacity and support people at end of life to remain
at home and in their communities to the greatest extent possible” (MoH, 2013f, p. 11), it
is clear that seniors with life-limiting conditions and seniors at end-of-life are being
encouraged to remain at home and receive care from family members; this has been
done in order to reduce the need for hospital stays. While it is hard to dispute the need
to “maintain the capacity of hospital resources to respond to those who require hospital
care” (MoH, 2013f, p. 5), this direction suggests that the primary effort of health
authorities and the Ministry of Health is to lower costs to the system, rather than focusing
on individual seniors’ wishes for end-of-life care.
Many achievements are referenced in the Provincial End-of-Life Care Action Plan
for British Columbia, including updating advance care planning legislation, provision of
resources to health care professionals in helping individuals plan for end-of-life,
implementation of after-hours palliative nursing programs province-wide, acquisition of
partnership funding to develop new palliative leadership approaches, and more (2013f,
p. 11). These claims, however, are made without evidence as to how end-of-life care
outcomes have improved as a result; progress on various programs is often generalized
and presented without any specifics. For example, “the B.C. Palliative Care Benefits
Program, which provides access to the same drugs and palliative supplies and
equipment at home as if the person were in hospital, has served increasing numbers of
clients in the last six months of life” [emphasis added] (MoH, 2013f, p. 10). Increased
uptake of a government program may indicate greater awareness and promotion of that
program, but not necessarily that it is meeting users’ needs. More evidence, in terms of
requisitioned drugs, supplies and equipment, as well as the specific numbers of clients
referenced, is required in order to substantiate this statement. In essence, the policies
provide many examples as to how end-of-life care has improved over the years, but it
remains unclear how actions such as these have served to help seniors at end-of-life
along with their families.
29
Additionally, while British Columbia’s end-of-life care policies present numerous
priorities, goals and actions, they do not specify who will be responsible or accountable
for the implementation and evaluation of each. Language such as, “this framework is not
intended to be prescriptive” (MoH, 2006b, p. 6) and “flexibility to determine how end-oflife care can best be delivered” (MoH, 2006b, p. 6) absolves partners or organizations
from taking any real action. However, information available on British Columbia’s
Ministry of Health websites is targeted to the general public and more likely to direct
families and seniors at end-of-life to sources where they can obtain more information
regarding home care. This text is much more productive in ensuring that informal
caregivers and seniors can access the information they need.
4.2. Case Study Analysis
The findings from the individual cases of Vancouver Coastal Health and
Providence Health Care are described below, based on the criteria for interpreting the
findings. This is followed by a comparative analysis examining how the practices of
these agencies differ in relation to each other.
4.2.1.
Case #1: Vancouver Coastal Health
In evaluating Vancouver Coastal Health, three different units of analysis were
examined: a Community Engagement Report on a Regional Palliative/End-ofLife/Hospice Care Services Strategy, published in 2005 by members of Vancouver
Coastal Health’s Community Engagement department; website text on Home and
Community Care; and interviews with palliative health care professionals working within
Vancouver Coastal Health. Findings have been summarized below with the Word tables
used in this case study analysis provided in Appendix G, and elaboration of the final
analysis presented in Appendix H.
Adequate Preparation and Advance Care Planning: Overall, health care
services currently exist within Vancouver Coastal Health to assist elderly patients and
families in preparing for end-of-life (VCH, 2013d). However, these services can be
difficult to access for a number of reasons:
30
•
Eligibility criteria with respect to citizenship, residency, and care needs can
be restrictive (VCH, 2013c).
•
Health care providers lack experience and comfort in initiating conversations
about treatment and palliation, as well as knowledge about palliative services
available (Tolson & Evoy, 2005).
•
Health care providers can be heavily reliant on palliative professionals to
provide consults to older patients, exacerbating the workload of palliative care
units (Palliative Health Care Professional, interview, 2013, December 3).
•
Advanced care planning is not materializing in practice. This may be due
partly to the difficulty in planning for end-of-life given unknown or
unpredictable illness trajectory, as well as health care professionals’
discomfort in helping families to initiate these discussions (Palliative Health
Care Professional, interview, 2013, December 3).
Effective Pain and Symptom Management: Achieving proper pain and
symptom management at home can be daunting. While nurses provide guidance to
informal caregivers in how to administer medications and other kinds of treatment upon
discharge, it is possible that not enough is being done to communicate a realistic
expectation of the duties involved. As well, a home death may not be feasible in all
cases based on the family dynamics and extent of responsibilities required in managing
pain and symptoms (Palliative Health Care Professional, interview, 2013, December 3)..
Provision of Psychosocial, Spiritual and Bereavement Support: Responses
to family members' needs for coping are either limited or reactive versus proactive. For
example:
•
Social workers become involved only after elderly patients have been
admitted, typically when their family caregivers can no longer manage
(Palliative Health Care Professional, interview, 2013, December 4).
•
Palliative volunteers commonly “do not really help with tasks but simply visit
for companionship…talking, reading, sitting quietly” (Program Manager,
Vancouver Hospice Society, e-mail message to author, 2013, December 9).
•
Dedicated counselling services for elderly patients and informal caregivers
are absent (Palliative Health Care Professional, interview, 2013, December
3).
Lastly, none of the data makes significant mention of spiritual services, indicating that
this, too, may be a reactive response to elderly patients’ or informal caregivers’ needs for
spiritual support.
31
Support for Informal Caregivers: Respite services and home support provided
by Vancouver Coastal Health are highly variable and inadequate. This is shown by:
•
The maximum allotment for home support being four hours a day or 28 hours
per week, despite many elderly patients requiring constant care;
•
Costly private home support or nursing, with private nursing costing up to
$10,000 per month for 24-hour, registered nursing care; and
•
Changeability in public and private health care workers, which can be
stressful on elderly patients and their families.
(Palliative Health Care Professionals, interviews,
2013, December 3 and 19)
Sufficient Financial Support: Access to financial support for informal caregivers
and seniors at end-of-life is extremely limited.
•
Eligibility for the BC Palliative Care Benefits Program is dependent on
agreement by the patient, family and care team on goals of care, as well as a
prerequisite for elderly patients to sign a Do Not Resuscitate (DNR) order.
For personal philosophical, cultural or religious reasons, some patients and
families may not want to agree to this (Palliative Health Care Professionals,
interviews, 2013, December 3 and 19).
•
The Employment Insurance Compassionate Care Benefit program provides
up to six weeks of benefits to a family caregiver but restricts eligibility only to
those employed. As well, the six-week period of coverage is an absolute and
cannot be extended (Government of Canada, 2013); this can be challenging,
given that end-of-life trajectory is largely a well-informed guess.
•
Availability of rental or loan equipment from the Canadian Red Cross Society
is subject to narrow restrictions, which can be limiting for families who could
potentially manage more easily with certain types of equipment but do not
have access (Palliative Health Care Professional, interview, 2013, December
3).
Summary and Limitations of Vancouver Coastal Health Findings
For this study, health care providers from Vancouver Coastal Health’s
Community Care teams2 were invited to participate in the research interviews; however,
these individuals were unable to accommodate the “request at this time due to time
2 The Community Care teams provide home nursing and home support services for both
Vancouver Coastal Health as well as Providence Health Care.
32
constraints” (Manager, Vancouver Coastal Health Hospice Palliative Care, email
message to author, 2013, November 8), citing lack of time and capacity. While it would
have been useful to hear the perspectives of those working in the community, as they
engage directly with informal caregivers and elderly patients at end-of-life, the interviews
with others working in palliative care and peripherally to Community Care provided a
well-rounded view of services available to palliative seniors and families residing within
Vancouver-City Centre.
Based on the evaluation, there exist a number of actions that would improve
support for elderly patients at end-of-life and their informal caregivers. Further training
for health care professionals working with palliative patients and their families; providing
information resources for families regarding end-of-life care; partnering with community
groups to provide information sessions to the public about death and dying; creating
standardized training programs for palliative and hospice volunteers; instituting a new
role of a palliative/end-of-life/hospice care coordinator; and improving home hospice
support and resources (Tolson & Evoy, 2005) are all strategies that have been
previously considered by Vancouver Coastal Health. However, current practice indicates
inadequacy in resources for informal caregivers and elderly patients. Services exist, but
there is room for improvement in areas such as training in palliative issues and end-oflife planning for health professionals; better education of pain and symptom
management for informal caregivers; greater availability of professional counselling
services; increased levels of support for personal care and household needs in the
home; and changes to eligibility criteria for palliative and end-of-life programs provided
by government and health authorities.
4.2.2.
Case #2: Providence Health Care
The practices of Providence Health Care were evaluated by examining three
separate data sources: St. Paul’s Hospital’s document on palliative care, website text on
end-of-life care, and interviews with palliative care professionals working within
Providence Health Care. The findings have been summarized below, based on the same
criteria used for case #1. Word tables used to conduct the analysis are provided in
Appendix I, while further details of the analysis can be found in Appendix J.
33
Adequate Preparation and Advance Care Planning: The Providence Health
Care palliative care team conducts patient consults and provides information to help
families prepare for end-of-life and connect elderly patients with resources. However,
there exists a risk of miscommunication and inconsistency in adherence to patients’
goals of care due to:
•
Lack of experience and comfort with health care providers’ ability to directly
address palliative issues;
•
Irregularity in how often family meetings are conducted, as these typically
take place only when complex family dynamics are involved; and
•
Uncoordinated efforts amongst health care providers to help families and
patients plan for end-of-life
(Palliative Health Care Professional, interview,
2013, December 16).
However, palliative health care experts within Providence Health Care stressed the
importance for families and health providers to have these discussions and ensure all
involved are provided the opportunity to make better informed end-of-life care choices
(Palliative Health Care Professionals, interviews, 2013, December 16 and 2014, January
28).
Effective Pain and Symptom Management: Pain and symptom management
was confirmed as one of the most difficult things to achieve at home for an elderly loved
one, as informal caregivers receive only minimal instruction on how to administer
medications for pain. However, it can also be challenging within the hospital as
inexperienced health care providers may not fully understand treatment needs: “So
many times the symptom management isn’t there because [the health care provider
outside of the palliative care unit] is afraid…they don’t even order them sometimes, what
is appropriate” (Palliative Health Care Professional, interview, 2013, December 16).
Provision
of
Psychosocial,
Spiritual
and
Bereavement
Support:
Psychosocial, spiritual and bereavement supports for informal caregivers and elderly
patients at end-of-life are critically lacking within Providence Health Care mainly
because:
34
•
These types of services are promoted through communication channels very
minimally, if at all;
•
High caseloads prohibit health care workers from effectively teasing out how
well informal caregivers are coping (Palliative Health Care Professional,
interview, 2013, December 16);
•
Emotional support for families and patients happens in reactive versus
proactive ways. This may also be a result of high workloads and a
predisposition for many doctors to quickly discharge patients out of their
wards, given limited beds and high numbers of patients (Palliative Health
Care Professional, interview, 2013, December 16).
Support for Informal Caregivers: Access to respite services, home support and
around the clock care in near-death stages are all lacking within Providence Health
Care. Inexperienced health care providers or lack of sensitivity around palliative
treatment can lead to cases where a family member needs more help, but has not been
identified as needing help by a health care professional; health care providers should be
able to elicit from family members whether things are not going well at home, but this is
a learned skill that many do not currently have. Primary health care providers require a
greater familiarity of palliative resources that can be provided to elderly patients who
wish to experience a home death, but greater home support resources are also needed
to enable informal caregivers to provide quality home care (Palliative Health Care
Professional, interview, 2013, December 16).
Sufficient Financial Support: Palliative care professionals within Providence
Health Care will often encourage patients to apply for programs such as the BC
Palliative Care Benefits Program and the Employment Insurance Compassionate Care
Benefit before leaving the hospital. However, these programs are described only briefly
in the palliative care unit’s document and not at all on the website for end-of-life/palliative
care. While health care professionals may be attuned with and willing to help patients
complete these forms, eligibility for these programs is confining, which may inhibit those
who need certain types of care to remain at home.
Summary and Limitations of Providence Health Care Findings
Many of Providence Health Care’s home care services, such as nursing and
home support, fall within the Vancouver Coastal Health region; as a result, many of
these services are provided by Vancouver Coastal Health. It is for these reasons that
35
certain documents, such as the document provided by St. Paul’s acute palliative care
unit, and the website text on end-of-life/palliative care, may not go into detail about
services available in the community. Given the nature of St. Paul’s acute palliative
setting, the team’s role is short-term versus long-term treatment of chronic illness i.e.
treatment and discharge to home, hospice or residential care, versus readying patients
specifically for end-of-life. However, the unit’s function is vital as it is a connection for
patients in accessing home-based palliative care services.
There are many ways in which Providence Health Care helps seniors and
informal caregivers to achieve a desired home death. Interactions with elderly patients
and families within the hospital setting are helpful in relaying information about what to
expect, and also help to connect them with other care providers in order to obtain the
health services they need. Moreover, discussions around advanced care planning, and
resources such as the BC Palliative Care Benefits Program, can be initiated by those
working within the palliative care team.
However, there needs to be more consistency across the hospital setting and
amongst other primary care providers, such as family physicians, to also provide this
information. Health care providers inexperienced in palliation or who are uncomfortable
with discussing death are currently deterring patients and families from acquiring
relevant information with respect to choices for end-of-life care at home, as well as
resources in the community. As well, informal caregivers require more education on
treating pain and symptoms to build greater confidence in their abilities to manage
administration of medications at home.
Lastly, much of the current system in helping elderly, end-of-life patients and their
informal caregivers is reactive versus proactive; this includes psychosocial support and
counselling, family meetings to determine goals of care, and even palliative care as a
whole. This creates an environment in which patients and families are sent home without
enough support, only to end up back in acute hospital care. The solution proposed by
Providence Health Care’s palliative care professionals is to increase home care supports
available to patients and families in order to successfully remain at home.
36
4.2.3.
Comparative Case Analysis
Overall, both Vancouver Coastal Health and Providence Health Care are
committed to serving elderly patients at end-of-life and supporting informal caregivers in
their role to help a loved one die at home. Both cases revealed extremely similar modes
of palliative and end-of-life care delivery with very few differences. As a result,
summarized here are the findings from the case study analysis in aggregate.
Palliative care professionals are restricted by the level of support for home death,
with only a limited allocation for each patient dependent on the illness trajectory.
Additionally, elderly patients at home who are imminently expected to experience death
may not have access to around the clock care, despite this resource being referenced in
website text and end-of-life policy documents. Private nursing and care aide services
can be used by elderly patients and informal caregivers, but extremely high costs to hire
these individuals can be a financial barrier; this can result in many elderly patients being
unable to access care levels beyond what is provided by the local health area.
Accessing certain types of end-of-life support is possible only through the referral
of a professional health care provider. For this reason, patients and families are reliant
on the knowledge of health professionals; if their family doctor does not know about
community supports, for example, the senior and informal caregiver will not, either. It
may only be when an elderly patient has been diagnosed with a life-limiting illness
and/or is admitted to a palliative care ward that they discover resources they could have
accessed earlier in their illness trajectory.
Services such as these can help to mitigate informal caregiver burden earlier on
and ensure elderly patients’ conditions are being managed at home in the best way
possible. However, as recommended by palliative care providers working within
Vancouver-City Centre, more home support is needed. In addition, counselling services,
more regular communication with patients and families, and greater sensitivity and
responsiveness to patient and family members' needs for coping, by all health care
professionals, are areas that need improvement. By taking a proactive stance to home
care and emotional support throughout an elderly patient’s chronic illness, the risk of that
patient having to be admitted to a formal institution for care is diminished; this can result
in a cost savings to the system, better quality of life for patients who wish to remain at
37
home as long as possible, and decreased burden to family caregivers supporting elderly
individuals at home.
In hospital, the inexperience of professional health providers remains an issue.
Many professionals continue to be uncomfortable with discussing death and advance
care planning with patients, while others are reluctant to make care decisions without the
approval from palliative team specialists. This has led to inconsistency in both the
delivery of care to elderly patients, as well as information download to family members
around end-of-life home treatment and options. What is needed are more family and
palliative care team discussions to ascertain goals of care, and greater efforts to provide
informal caregivers with adequate knowledge in providing pain and symptom
management to elderly patients at home. Only by building palliative care capacity
amongst all health care providers and families can these issues be resolved.
4.3. Interviews with Informal Caregivers
Immediately emerging from the four interviews conducted with informal
caregivers was the realization that each person’s situation was very different from that of
the other interviewees (see Appendix K for descriptions of caregivers who participated).
Despite the diversity of informal caregivers’ situations who volunteered to participate in
this study, there were a number of common themes which surfaced regarding supports
currently being utilized, as well as supports families needed but to which they did not
have access in providing end-of-life care to an elderly individual at home. These are
highlighted in the following sections.
4.3.1.
Supports Currently in Place
Almost all of the interviewees accessed home support provided by the local
health area. Not surprisingly, the amount of support which each informal caregivers’
elderly family member received varied depending on the assessed levels of care
required. As one family caregiver explained:
Because mother became palliative twice, or maybe three times, she was
allotted more time for external nurse care…and that lasted for quite some
38
time, and it was a few hours a day, but it was really extremely
appreciated. It varied depending on mother’s situation, but I remember
that at the most intense point it was four hours a day, and I think it was
five days a week. I may be exaggerating, but it was a substantial amount
of time (Caregiver 3, interview, 2013, November 29).
However, while the informal caregivers interviewed were genuinely appreciative of the
home support they received, there were some concerns as well. One was the variability
in the home support workers coming into the home. These home care workers were
different from shift to shift, creating anxiety for elderly patients and informal caregivers as
this detracted from any ability to create familiarity or consistency in routine amongst the
family. This also resulted in differing levels of care, depending on the readiness and skill
level of the home support worker assigned, but “because it was free and because I
needed it, we kind of put up with it” (Caregiver 3, interview, 2013, November 29).
Additionally, informal caregivers indicated a need for greater levels of home support,
especially in the final days of life: “They [the community palliative care nurses] were
good. They did their…job fine, you know? But, you know, we really needed…the last ten
days of her life, we really needed nursing support more in the home, and we only got
one night of it” (Caregiver 4, interview, 2014, January 14).
Most of the informal caregivers interviewed talked about the importance of having
a good family physician – in particular, one who is willing to make house calls when the
elderly patient starts having difficulty with getting to appointments:
We had a wonderful GP [general practitioner] who lives a block away, and
when my husband couldn’t go to see him at the clinic, which is four or five
blocks away, couldn’t get out of the car …the GP would come along,
listen to his chest…he was fabulous. Wonderful support, very caring
(Caregiver 1, interview, 2013, November 28).
Another informal caregiver echoed this sentiment, suggesting that house calls be
provided to seniors at end-of-life to help ease their burden, as well as the burden to
family members: “Luckily, my mother’s doctor, in the end, did house calls…yeah, that
would be huge, if they could come to you as opposed to you going to them. Huge! They
need mobile teams” (Caregiver 2, interview, 2013, November 28).
39
In terms of equipment or items needed for home care, minor pieces such as grab
bars and raised toilet seats are subsidized through the BC Palliative Care Benefits
Program, while most major items such as wheelchairs could be borrowed from the
Canadian Red Cross Society for free or by donation. Informal caregivers confirmed this
was useful, as it meant not having to pay for major equipment out of pocket:
Red Cross was a place [where] I…borrowed a wheelchair for a few
months. I got my first bath seat there and borrowed a few things from
them and then gave them a donation. So they were extremely useful
(Caregiver 1, interview, 2013, November 28).
They [home care support workers] made recommendations on things to
attach into their bathroom so they wouldn’t fall off the toilet or they
wouldn’t slip in the shower, and all of that equipment we actually got on
loan through the Canadian Red Cross…they have a whole equipment
shop, and we ended up getting it on loan…and then I ended up returning
it after we didn’t need it (Caregiver 2, interview, 2013, November 28).
Family caregivers discussed the need for emotional support and respite care;
however, the types of support desired varied from person to person. For example, one
felt it was adequate knowing that others were or have experienced a similar situation,
while another found comfort in providing “a listening ear” for others:
I've got quite a few supportive women friends, and they were wonderful to
me. So, they gave me lots of emotional support. And they phoned me,
and asked me how I was doing. It was the ones that would phone and ask
how he was doing, and I'd tell them, but I'd think, ‘What about me?’
(Caregiver 1, interview, 2013, November 28).
I also took advantage of a lot of community seminars…to learn about
dealing with elderly parents, to learn about Alzheimer’s, the disease, how
families cope. So I did take advantage of a lot of those services
(Caregiver 2, interview, 2013, November 28).
Some caregivers discussed how they learned about home care resources through
support groups and others who had been through similar experiences. However, other
informal caregivers were uninterested in attending support groups; they were inclined to
read about coping mechanisms or discuss their emotions with friends not going through
the same experience:
40
[Support groups] would just be another burden to go to. I’d be listening to
somebody else’s woes – I just couldn’t handle it. I didn’t want to…hear
other spouses telling me of the agony of what they’re going through or
what their spouse is going through. I’ve got enough on my own plate…I
feel terrible for these people as well, but I don’t want to add to their
suffering by listening to mine. What’s the point? (Caregiver 4, interview,
2014, January 14).
This reveals that a broad range of emotional support resources is required to ensure the
diverse psychological needs of informal caregivers can be met.
4.3.2.
Unavailable Supports
Transportation, and specifically, getting to medical appointments, as well as
parking expenses were cited by most family caregivers as substantial burdens. As an
elderly patient’s chronic illness progresses so, too, can the need for increased
appointments with medical specialists. The act of repeatedly transporting a family
member to and from appointments, waiting for long periods of time, as well as paying for
parking were all tiresome tasks:
The worst part was driving him there and waiting to see the oncologist
when he felt so lousy. He progressively got weaker and weaker…getting
to those appointments was tough (Caregiver 1, interview, 2013,
November 28).
When you have somebody in a walker and they need to get to a medical
appointment to have a blood test every two weeks, which is what
happens when you have heart problems, it was an ordeal to transport an
88 year old man in my car and take him to the doctor and not be able to
get parking by the doctor’s…it just became such a strain on me,
personally, that we started to get extra help, but the help was in the
home. It still didn’t deal with transportation to all of these medical
appointments (Caregiver 2, interview, 2013, November 28).
However, one informal caregiver mentioned getting help from volunteers willing to drive
cancer patients to and from appointments:
There is the freemasons who drive, who are wonderful, and we did use
them on a couple of occasions when I had conflicts and I had to go to an
appointment, myself…you phone them up the day before and you tell
them what time you have to be at the Cancer Agency and they drive
you…if you’re being driven by one person in their car, the chances are,
41
you’re going to be picked up on time, you’re going to get there on time,
it’s going to be more comfortable, and you’re not likely to pick up bugs
other people have got [if travelling on transit] (Caregiver 1, interview,
2013, November 28).
Many elderly, end-of-life patients required additional levels of home care not
covered by the local health area. These individuals and their families hired private home
support or home nursing care, paying for these services out of pocket. However, private
care expenses were substantial, and also did not provide all types of care that were
needed:
In the end…when we were paying for care seven days a week, 12 hours
a day, that was costing us $22 an hour for a [licensed practical nurse]
through a care agency…we were spending over a $100,000 dollars a
year, and I knew we could not keep that pace up forever (Caregiver 2,
interview, 2013, November 28).
We couldn’t take him [their father] home because we couldn’t make
arrangements to have somebody come and give him his insulin
shot…there’s no service that’s available. Even Nurse Next Door – they’re
not registered nurses (Caregiver 2, interview, 2013, November 28).
Other things which informal caregivers mentioned needing help with included
more help in managing medications and making care decisions, as they often felt
overwhelmed with the responsibility to be the primary decision-maker; greater sensitivity
of health care professionals in tending to the elderly patient’s or family member’s
emotional needs, as some had concerns about their situation they felt went unaddressed
by health professionals; and an overall need for more counselling services.
4.3.3.
Other Considerations in Supporting Informal Caregivers
Based on conversations with informal caregivers who provided home care to a
senior at end-of-life, the challenges in providing care can differ hugely based on the
family member’s illness. For example, an individual diagnosed with cancer may undergo
chemotherapy or radiation treatment; someone with dementia may need to be in a
facility designed for those who may be a wander risk; and a person with type 2 diabetes
may need to self-administer daily insulin doses by needle. This variability in treatment
leads to significant differences in the types of care that informal caregivers may need to
42
provide to their elderly family member at home; because of this, a wide range of
resources from the local health area is needed to support the majority of family
caregivers in providing home care to a senior at end-of-life.
Many family caregivers also mentioned that multiple trips to emergency were
often common in caring for a dying senior at home. This can be stressful for both the
elderly patient as well as the family member providing care:
He [the father] was rushed to emergency six times in four weeks. By the
time we were on the third bounce back, the hospitalist and the social
worker…basically said, “He can’t go back to the home.” So he was placed
immediately in one of the care facilities, and then he begged me every
day to go home (Caregiver 2, interview, 2013, November 28).
This may indicate a need for more home support, or access to mobile teams dedicated
to respond in emergency or crisis care situations.
In most of the interviews, informal caregivers described the responsibility to be
an advocate for their elderly family member. However, they also highlighted significant
challenges in trying to navigate the system and that having a person to assist with this
would be a considerable help:
I just felt there was no one service or counseling or something that could
help you navigate through the system…what I learned is the family
member has to be the advocate ‘cause the parent is not necessarily
thinking clearly…you have to be there at the hospital when they hit
emergency, because they can’t answer how many medications they’re
on. You have to be there to negotiate the home care, because they’re not
aware of some things that might be happening or should be
happening…you just have to be a real strong advocate (Caregiver 2,
interview, 2013, November 28).
While this can be emotionally challenging for informal caregivers in the best of
circumstances, there is a risk that many family caregivers may be unable to fulfill this
role, based on their disposition or personality, lack of knowledge, or unwillingness to be
an advocate for their elderly family member.
As one possible community-based solution to generate greater awareness
around end-of-life and palliative care services, one informal caregiver suggested
43
creating a health care co-op; this would help connect patients and families with others
living in the same neighbourhood. In this co-op, resources would be coordinated
amongst neighbours and others interested in helping or receiving assistance as they
attend to end-of-life home care needs:
I’d like to see…a health care co-op…whose members would be both the
caregivers and the recipients of care, that’s partially funded by
government and partially paid by the recipient…where the caregiver and
the members…get to meet as members of the same co-op and begin to
establish a protocol of how to work together… it could be a resource in
my neighborhood where, you know, you could go in there and say, ‘This
is what I’m going through – my sweetheart and I – and we need someone
to help us out’ (Caregiver 4, interview, 2014, January 14).
This type of resource could potentially help to manage the expectations of informal
caregivers in undertaking the caregiver role, and coordinate basic services which may
be unavailable through formal channels – for example, home support such as meal
preparation, transport to and from appointments, respite care or companionship
services.
Lastly, the informal caregivers participating in the research unanimously
exclaimed having no regrets in either giving up work or adapting their lives to take care
of an elderly family member at end-of-life. It is for this reason that identifying and
ensuring adequate support mechanisms are in place to help them fulfill a loved one’s
wishes to die at home.
4.4. Summary: Research Findings
The discourse analysis revealed that the Province of British Columbia is focused
on substantially shifting the delivery of end-of-life and palliative care into the community
and away from formal, institutionalized care. However, no specific direction is provided
as to how elderly patients and informal caregivers will be supported in the midst of these
changes, or how they can interface with professional health partners and agencies to
achieve quality care at home. Further, older patients and their families are largely
excluded from the palliative care teams of which they should be a part, with policies
situating their information needs as secondary to those of health care professionals.
44
Current end-of-life policies, therefore, do little to empower elderly individuals and family
members in palliative care; they serve only to further perpetuate the status quo.
From the case study analysis, it was clear that home support for older patients is
critically inadequate. Home support, 24-hour care at imminent death, and respite care
are services currently available, but are subject to strict eligibility or must be paid for out
of pocket; this can be exclusionary to those who need these types of supports. As well,
counselling services, communication with families regarding end-of-life issues, and
sensitivity and responsiveness to seniors’ and informal caregivers’ needs are all areas
requiring improvement.
Interviews with informal caregivers exposed disparities between their needs and
current practices employed by health agencies. More help is needed in the home, not
only for personal care, household needs and managing medications, but also for
administering illness-specific treatments, assisting in emergency or crisis situations and
in making care decisions. Those hiring private care in the home had concerns about
cost, consistency in health care workers, and the quality and types of care being
provided. Additionally, many described frequent transport to and from appointments,
parking expenses and long wait times as distressing. Finally, many informal caregivers
felt challenged in trying to navigate a complex health care system on their own,
particularly when dealing with professional health providers largely insensitive or
unresponsive to their emotional needs. This indicates that informal caregivers need
greater assistance in accessing available services, being able to ask the right questions,
and obtaining appropriate information given elderly patients’ goals of care.
These results inform what policy options can best address the issue that informal
caregivers in British Columbia currently do not have adequate access to resources
which would allow them the greatest opportunity to provide quality care to an elderly
family member who wishes to die at home. The sections that follow describe the criteria
and measures used to evaluate potential policy options that can help mitigate resource
access challenges facing family caregivers and elderly patients.
45
5.
Criteria for Analysis of Policy Options
In developing appropriate responses to the support needs for informal caregivers
and dying seniors, potential policy options have been evaluated using the following
criteria: access to resources, minimization of caregiver burden, and good death, which
together, indicate overall effectiveness of the policy, as well as financial cost,
implementation complexity, and overall effectiveness. These criteria and measures are
summarized in Table 4 and detailed below. Potential policy options are presented in the
following section.
Table 4.
Criteria
Access to
Resources
Minimization of
Caregiver
Burden
Criteria and Measures Used in Policy Analysis
Description
Measurement
Value
To what extent does the policy
option increase informal
caregivers’ access to resources
which would allow them the
greatest opportunity to provide
quality care to an elderly family
member who wishes to die at
home?
Policy increases access to resources High = 3
in a substantial or significant way
To what extent is the policy able
to minimize or alleviate one or
more of the following burdens to
informal caregivers?
 Employment risks;
 Financial burdens; and
 Psychological and
physiological strain.
Policy adequately addresses three of High = 3
the burdens listed
Policy moderately increases access
to resources
Medium = 2
Policy increases access to resources Low = 1
only marginally or not at all
Policy adequately addresses two of
the burdens listed
Medium = 2
Policy adequately addresses one or
none of the burdens listed
Low = 1
46
Criteria
Description
Good Death
(weight =0.5)
Financial Cost
Implementation
Complexity
Measurement
Value
To what degree can the policy
meet one or more of the
following indicators?
 Enable proper pain and
symptom management;
 Help to meet dying seniors’
physical and emotional needs;
 Help dying seniors adequately
prepare for death; and
 Ensure that dying seniors’
wishes for death are
honoured.
Policy adequately meets at least
three of the indicators listed
High = 3
Policy adequately meets two of the
indicators listed
Medium = 2
What is the financial cost to
implement the policy relative to
the status quo?
Low or minimal financial investment
required to implement policy
High = 3
Moderate financial investment
required to implement policy
Medium = 2
Significant financial investment
required to implement policy
Low = 1
Minimal amount of administration
required to implement policy
High = 3
Moderate amount of administration
required to implement policy
Medium = 2
Significant amount of administration
required to implement policy
Low = 1
What is the degree of
administrative complexity
required to implement the
policy?
Policy adequately meets one or none Low = 1
of the indicators listed
Access to Resources
This criterion evaluates the option’s ability to deal directly with the policy problem,
as it refers to its overall ability to increase informal caregivers’ access to resources which
would allow them the greatest opportunity to provide quality care to an elderly family
member who wishes to die at home. If the policy option is able to substantially increase
access, it scores highest. Conversely, if the policy shows little or no ability to increase
caregivers’ access to resources, it scores poorly.
47
Minimization of Caregiver Burden
This study has shown that caregiver distress is an important issue worthy of
attention by policy makers. If informal caregivers “burn out,” this can increase the risk
that they, along with the elderly individuals they are caring for, will need to be admitted
for institutionalized care. This criterion examines how well the policy option is able to
mitigate caregiver distress through minimizing employment risks, financial burdens, and
psychological and physiological strain.
Good Death
The desire to experience a good death is inherent in the choice of seniors to die
at home, nearer to friends and family. Indicators such as adequate pain and symptom
management (HCC, 2012; Stajduhar & Cohen, 2009), having their physical and
emotional needs met (Ajemian & Mount, 1980; Carstairs, 2010; Stajduhar & Cohen,
2009; Steinhauser & Clipp, 2000), and being able to adequately prepare for death and
ensuring their wishes for death are honoured (MoH, 2013e; Stajduhar & Cohen, 2009)
are ways in which achieving a good death can be measured. Policies that are able to
achieve these attributes score favourably, while those unable to meet these needs of
seniors at end-of-life score poorly. As this option addresses informal caregiver burden
indirectly, it has accordingly been assigned a weighting of 0.5.
A policy that is able to improve access to resources, minimize caregiver burden,
and contribute to a good death will ultimately score well. As such, these criteria
considered together demonstrate the overall effectiveness of the policy in addressing the
problem of inadequate access for caregivers and seniors to end-of-life resources.
Financial Cost
Cost is an important criterion that must be considered. Given ever-diminishing
budgets for health care, cost in this study refers to the financial expenditures needed to
implement a policy option, relative to making no changes. If minimal financial cost is
required in the implementation and maintenance of the policy, the option scores
favourably; conversely, if high financial costs are associated with the policy, the option
scores unfavourably.
48
Implementation Complexity
Any policy option will have some measure of implementation complexity, beyond
financial costs, depending on what is required to actualize the option. With regards to
this study, health authorities are already grappling with limited resources and decreased
program funding. A policy option can score well on this criterion if a minimal amount of
change management is required in its implementation, or if reasonable reallocation of
resources to activate the policy is possible.
49
6.
Policy Options
Given the research findings from the discourse analysis, case study analysis and
interviews with informal caregivers, four different policy options are proposed. These are
briefly described below. More detail on each policy option is provided in Appendix L.
6.1.1.
Increase the availability and extent of publicly funded formal
home support
Findings suggested that a lack of home support detracted from informal
caregivers’ ability to manage their care duties without feeling significantly burdened. An
increased allowance for home support and help with household needs can ensure
informal caregivers are able to better manage with elderly, end-of-life patients in the
home; this can serve to mitigate safety issues with regards to pain and symptom
management, minimize caregiver burden, particularly in later stages of patient illness,
and create greater opportunities for proactive caregiver respite. As well, it is worthwhile
to consider expanding the extent of professional home care to areas such as emergency
or crisis response, or bespoke treatment based on specific illnesses and required
treatment.
6.1.2.
Provide a single point of contact for elderly end-of-life
patients and their families
The research findings revealed complexity within the health care system that is
extremely challenging for informal caregivers and end-of-life seniors to discern. A single
point of contact for elderly, end-of-life patients would help families in navigating the
health care system, completing applications for social programs such as the BC
Palliative Care Benefits and federal Compassionate Care Benefit programs, and
obtaining necessary equipment for the home. This individual would also help informal
caregivers connect with relevant care professionals, coordinate appointments based on
treatment plans and goals of care, and act as the advocate for both families as well as
50
elderly, palliative patients. Due to the highly specialized nature of this role, continuing
professional development for these health professionals is vital in ensuring ongoing
standards of care (Brown et al., 2002).
6.1.3.
Increase frequency and reach of family meetings
Research results suggested that significant barriers to accessing end-of-life care
include a lack of awareness of services, as well as not enough understanding amongst
all involved as to treatment options. Conducting more frequent family meetings with the
broader palliative care team would help to build capacity and understanding amongst
health professionals, caregivers, and seniors with respect to palliative treatment and
services. In addition, this would help to reduce anxiety amongst informal caregivers and
elderly patients by creating opportunities to engage in transparent communication about
treatment options and goals of care. These meetings are proposed for all elderly patients
arriving in hospital within 72 hours of their arrival, or elderly patients and/or families who
have requested more information about palliative care.
6.1.4.
Create local, community-based services and support
networks
Many informal caregivers indicated a need for more help with tasks such as
transporting elderly family members to and from appointments, making care decisions,
and accessing counselling, respite and emotional support, with the findings suggesting
that current resources do not address these needs directly or in any significant way.
Local, community-based support and care networks for older patients and their families
can comprise a number
of
resources: a shuttle service for appointments,
companionship, assisting in the home to allow family caregivers to take a break from
their duties, or counselling. Expanded support networks in the community could emulate
current best practices of hospice volunteers, or existing organizations known for
providing first-class support to elderly patients at end-of-life and their families – but the
primary attribute is that the creation of resources and services would be left to those
within the community based on their specific needs.
51
The next section looks at each of these policy options in turn, evaluating the
viability of each to make a difference to informal caregivers and elderly patients in
ensuring greater access to resources at end-of-life.
52
7.
Analysis of Policy Options
The table below summarizes the evaluation of each policy option based on the
criteria and measures described. Green represents a high (3) scoring, yellow a medium
(2) scoring, and red a low (1) scoring.
Table 5.
Overview of Policy Analysis Findings
1. Increase the
2. Provide a single 3. Increase
availability and
point of contact
frequency and
extent of publicly
for elderly end-ofreach of family
funded formal
life patients and
meetings
home support
their families
Criteria
4. Expand
community-based
services and
support networks
Access to
Resources
3
3
3
2
Minimization of
Caregiver Burden
3
3
1
2
1.5
1
0.5
1
1
3
2
1
1
2
1
1
9.5
12
7.5
7
Good Death
(weight=0.5)
Financial Cost
Implementation
Complexity
Total Scores
7.1.1.
Increase the availability and extent of publicly funded formal
home support
Various sources examining the merits and challenges of increasing publicly
available home support were used to evaluate this policy option.
Access to Resources: Increasing publicly funded home support would create
increased access to resources for the provision of end-of-life home care. The 2009
Canadian Community Health Survey-Healthy Aging revealed that many seniors were not
53
having all of their home care needs met, with many attributing this to personal
circumstances, such as inability to pay, or lack of service availability (Hoover &
Rotermann, 2012). Further, having unmet needs can result in negative health impacts
yet, seniors who reported receiving care only from formal sources were less likely to
have tangible support, meaning they felt they would be unable to access help if they
were bed-bound, needed to get to the doctor, had to prepare meals or complete daily
chores while ill (Hoover & Rotermann, 2012). While positive impacts of the 2004 Health
Accord are marginal, First Ministers have historically acknowledged that “home care is
an essential part of modern, integrated and patient-centered health care” (Government
of Canada, 2004), recognizing that increased end-of-life services in the home such as
case management, nursing, palliative-specific pharmaceuticals and personal care would
contribute to quality of life. Greater home support does not necessarily guarantee
increased access to resources for all populations, in particular, those with language or
cultural barriers (Giesbrecht, 2013); however, this recognition of the importance of
increased home care, particularly at end-of-life, reveals that greater access to resources
would contribute to an increased number of informal caregivers being able to provide
quality care. Therefore, this policy option scores high (3) in terms of increasing access to
resources.
Minimization of caregiver burden: In a study assessing the complaints of
family members caring for older dementia patients, 77% of family caregivers identified
the need for more home support to help with challenges such as having no one else to
help provide support in the home, a feeling of no personal liberty, and being forced to
change working hours (Thomas et al., 2002, pp. 1039-1040). Palliative care
professionals also expressed that greater public home support, such as 24-hour care,
increased respite services, and adult programming, are all ways to mitigate families’
caregiving burden (Ackenhusen, 2011), particularly as the cost of private care can be
extremely restrictive in obtaining the support they need (Palliative Health Care
Professionals, interviews, 2013, December 3 and December 19). With regards to
employment changes, three of the four informal caregivers interviewed in this study
resorted to leaving work, while one remained employed only by hiring live-in, full-time
home support; this suggests that increased formal support in the home can help to
minimize employment risks, as well as mitigate productivity losses in the workforce.
54
Lastly, international studies have shown that increasing formal, publicly available home
care services, as well as specialized services at home (Mestheneos & Triantafillou,
2005), can contribute to improving informal caregivers’ well-being. For these reasons,
increasing the availability and extent of publicly funded formal home support scores high
(3) in being able to minimize caregiver burden.
Good death: Seniors require greater home support as their illnesses progress,
as unmet needs for professional home care can result in negative consequences:
injuries; depression and reduced morale; higher hospitalization rates; and increased
risks of falls, institutionalization and premature death (Hoover & Rotermann, 2012).
Greater levels of formal treatment in the home can help to minimize these risks and
contribute to end-of-life seniors’ ability to experience a good death. Patients receiving
hospital care at home report high levels of satisfaction with their location and quality of
care, and dementia patients experienced improvements with problems related to sleep,
agitation and aggression, and feeding (Shepperd et al., 2009). In preparing for death,
patients who engaged in end-of-life discussions with their physicians experienced lower
health care costs by reductions in intensive, curative treatments; further, higher costs
were associated with worse quality of life at death (National Cancer Institute, 2013).
While this does not specifically relate to professional care in the home, this evidence
suggests that access to health care professionals in the final days of life can help to
ensure dying seniors’ wishes for death are honoured, as well as help to meet elderly
patients’ physical and emotional needs. Further, all studies referenced revealed only
positive outcomes of such a policy direction, suggesting that increased home support
does not detract from end-of-life seniors being able to experience a good death. For
these reasons, this policy option receives a high score (3).
Financial cost: In 2009/10, the health authorities combined spent approximately
$339 million on subsidized home support, or $30 to $40 per hour of home support
(Office of the British Columbia Ombudsperson, 2012, p. 32). However, there is evidence
to suggest that a redistribution of costs from acute to home and community care can
result in financial savings. In Ontario, a program focused on shifting elderly alternate
level of care patients from hospital to home found that every 10% of patients resulted in
a $35 million saving to the formal health care system (Canadian Home Care Association,
2010, p. 3). A study which reviewed individual patient data on avoiding institutional
55
admission by receiving hospital care at home found that, in general, costs were lower for
patients receiving hospital care at home than those receiving inpatient care (Shepperd et
al., 2009, p. 179). Conversely, doing nothing may have negative cost implications for
formal health care. As the country’s population continues to age, demand for home care
services will only increase and “if that demand isn’t met, people who could have received
care at home will instead end up in costly acute care settings, creating an incredible
financial strain on the health care system” (Collier, 2011, p. E451). This supports the
belief of palliative care experts in Vancouver that home care may cost more in
community but would cost less in acute care (Palliative Health Care Professional,
interview, 2013, December 16). However, the potential savings this policy may generate
remains uncertain given the significant financial investment, and redistribution of costs in
the health care system, required. As well, the time frame to realize this cost savings is
also indeterminate. For these reasons, this option scores low (1) in terms of financial
cost.
Implementation complexity: There are many factors necessary in ensuring that
home support is designed to meet the needs of end-of-life seniors in the community.
This includes the commitment and collaboration of the entire health and palliative care
team; creating an environment where health care workers have the opportunity to
engage and dialogue with leadership on a daily basis; developing protocols for a range
of patients; and the support of government health ministries (Canadian Home Care
Association, 2010). Successful care models effective in meeting patient needs also
demand ongoing involvement of patients and informal caregivers in program planning,
implementation and oversight (Kodner & Spreeuwenberg, 2002). This must be done in
the context where formal home care services currently available have been criticized as
lacking: “Adult Day Program[s]…are at least a year wait list…and Home Support is
limited with poor continuity. These challenges are myriad, and make it difficult to provide
effective services to clients and their families” (Chant, 2011). Further, a push to increase
home support may be met with opposition from doctors. Ontario doctors assert that care
providers receive around 40% less pay for the extra time and effort required to work out
of office and treat patients in their homes; governments will therefore need to reform
payment models in order to encourage doctors to accept this method of care delivery
(Webster, 2011).
56
Thought must also be given to administering costs for increased public home
support. In many cases now, individuals receiving home and community care must pay a
portion of the costs. Health authorities use a formula set by regulation to calculate how
much subsidized home support clients will be charged, which is based on the patient’s
income from the previous year. Currently, under this formula, about 71% of home
support clients pay nothing to receive these services; 3% pay up to $10 per day; 6% pay
between $10 and $20 per day; 20% pay more than $20 per day; and seniors with earned
income pay a maximum of $300 per month for home support (Office of the British
Columbia Ombudsperson, 2012, p. 32). This formula will likely need to be reviewed
and/or adjusted to account for costs associated with increased levels of public home
support. For these reasons, implementation complexity receives a low score (1) for this
policy option.
7.1.2.
Provide a single point of contact for elderly end-of-life
patients and their families
The concept of “patient navigation” was used as a basis for evaluating the
feasibility of this policy option. This is a role that has been previously tested within the
Canadian health care system, primarily at cancer agencies and “intended to expedite
patient access to services and resources, and improve continuity and co-ordination of
care throughout the cancer continuum” (BC Cancer Agency [BCCA], 2005, p. 3).
Access to Resources: The use of nurse navigators in cancer agencies has
resulted in satisfaction amongst patients and their families. Evaluations with patients and
health care providers reveal that navigators can help patients in asking questions, as
well as create increased capacity to ensure patients are able to get the care they want
and need (BCCA, 2005, p. 3). In addition, nurse navigators have proven themselves as
being able to meet patients’ and families’ needs in coordinating and improving access to
treatments, helping with the logistics of getting to appointments, and assisting with
dealing with financial impacts, such as drug costs and loss of income (Cancer Care
Nova Scotia, 2004). Because of the high ratings nurse navigators have received, this
policy option scores high (3) in its ability to increase access to resources for patients and
families.
57
Minimization of caregiver burden: By acting as a bridge between patients and
health care providers, patient or nurse navigators are able to assist families in the role of
advocacy. For informal caregivers, this can result in better patient-physician
communication and a greater ability for their informational needs to be met. As well,
psychosocial issues and common employment and insurance problems are more likely
to be addressed (BCCA, 2005, p. 3), particularly as patient navigators are best placed to
identify how well informal caregivers are coping (Palliative Health Care Professional,
interview, 2013, December 16). Further, having a single point of contact can also help to
smooth the transition to home by expediting equipment and resource coordination
(Palliative Health Care Professional, interview, 2013, December 4). Therefore, because
of this policy option’s ability to address all three burdens identified in the criterion, it
scores high (3) in its ability to minimize caregiver burden.
Good death: Pilot projects in British Columbia have commonly appointed nurses
in the role of patient navigator. Experience in medicine has enabled these nurse
navigators to oversee treatment processes, provide information and support to their
patients, and link with other health care professionals; this coordination of efforts has
resulted in patients receiving psychosocial supports, increased home care and
information, but has also helped patients “develop effective coping strategies3 that
maximize healthy functioning” (BCCA, 2005, p. 3). While nurse navigators have shown
to help improve care to end-of-life patients in these areas, there is a lack of evidence to
suggest this role has any significant positive impact on the ability to manage pain and
symptoms at home, adequately prepare patients for death, or ensure their wishes for
death can be honoured. Therefore, this option scores medium (2) in ensuring a good
death at home.
Financial cost: Evidence shows that timely access to information and emotional
support at time of diagnosis is imperative in being able to help patients adapt and better
prepare for their new circumstances; however, failing to recognize and treat patients with
high emotional distress can result in increased health care costs (BCCA, 2005, p. 3).
3
Coping strategies relate to “knowledge or, or access to assessment and planning which will
enhance their psychological, social, and physical functioning…[as] many patients require
assistance with identifying and obtaining illness-related information and services” (Conkling,
1989, p. 290).
58
Nurse navigators have been used to assist patients and families with navigating the
health care system after diagnosis. At an approximate maximum wage of $46.22 per
hour (Vancouver Island Health Authority, 2011) with modest overtime4, the estimated
wage for a full time nurse navigator is just over $100,000 per year. Nurse navigator
caseloads are likely to be similar to that of Home Care case managers in Vancouver; the
size of these caseloads at any given point in time is approximately 100 patients, with
about a quarter of those cases being fairly complex (Palliative Health Care Professional,
interview, 2014, January 7). However, the patient navigator position could be considered
a reorganization of roles from one area of nursing to another; instituting dedicated
patient or nurse navigator roles, therefore, would not necessarily increase human
resource costs but merely redistribute them. The relative financial cost against doing
nothing for this option is low; therefore, this criterion scores high (3).
Implementation complexity: Successful programs for nurse navigators across
Canada have varied in their implementation. In British Columbia, most navigation
programs evolved organically, with ‘best practice’ navigators using skills and resources
based on their individual interpretation of patient needs (BCCA, 2005, p. 3). In Ontario,
specific training was provided to nurse navigators for cancer patients, with a specific
emphasis on the diagnostic phase of care (Cancer Care Ontario, 2013). Nova Scotia’s
program identified a number of key elements for success: strong commitment from the
district to the program; recruiting a professional with the right skills and personality;
ongoing communication plans; good working relationships with health professionals;
comprehensive orientation and ongoing educational opportunities; and central
leadership and expertise (Cancer Care Nova Scotia, 2004). A pilot project in VancouverCity Centre for elderly, palliative patients would be the first of its kind, but learnings could
be taken from successful programs in British Columbia and elsewhere in order to adapt
nurse navigation for families providing home care to seniors at end-of-life. It is
reasonable to infer, therefore, that creating a program would not require a significant
amount of administration; thus, this criterion scores medium (2) in implementation
complexity.
4
It is common for nurses in British Columbia to work a significant amount of overtime. In 2009,
nurses worked a total of approximately 1.4 million hours of overtime; this amount decreased
to a cumulative total of 980,000 overtime hours in 2010 (MoH, 2012b).
59
7.1.3.
Increase frequency and reach of family meetings
To evaluate this option, literature identifying the advantages and potential
disadvantages of conducting regular family meetings was used.
Access to Resources: Increasing the frequency and reach of family meetings is
effective in improving access to resources for informal caregivers. Recent studies reveal
real benefits to family members in meeting their care needs, specifically around having
information for what to do at home and who to contact when help is needed for specific
problems (Hudson et al., 2009). Patient care planning can be optimized when family
members are involved in discussions with members of the health care team, as well as
create opportunities for health providers to identify family members who may need
greater levels of support (Hannon et al., 2012). For these reasons, increasing the
regularity and reach of family meetings scores high (3) in terms of access to resources.
Minimization of caregiver burden: In a recent study, the benefits of family
meetings were assessed from the perspective of family members using the Family
Inventory of Needs; this is a tool commonly used to assess the importance and fulfilment
of care needs (Hannon et al., 2012). The results showed improvements in meeting the
care needs of family members in most of the areas assessed, including: feeling that they
had their questions answered honestly; a greater awareness of the facts of prognosis;
knowing exactly what is being done for the patient and what treatments they are
receiving; a greater understanding of what symptoms the disease and treatment can
cause; knowing when to expect occurrence of symptoms; having information for what to
do for the patient at home; and knowing more about others who can help with specific
problems (Hannon et al., 2012). A different study noted similar results, with the majority
of family members reporting that they had clearly understood the purpose of the
meeting; that they had been able to talk about what was important; that the meeting had
helped move them towards an acceptable solution; and that they were more confident in
dealing with their situation as a result of the meeting (Hudson et al., 2009). While these
benefits to informal caregivers are not insignificant, neither study specifically revealed
how family meetings could mitigate either employment risks or financial burden; for this
reason, this policy option does not adequately meet the criterion of minimizing caregiver
burden and scores low (1).
60
Good death: Many of the benefits mentioned above can contribute, however, to
the elderly patient at end-of-life experiencing a good death. As a result of attending a
multi-disciplinary family meeting, informal caregivers have greater information and
awareness around prognosis, treatments for the patient, and what to expect regarding
symptoms (Hannon et al., 2012). Family doctors have an important role in helping
seniors and families prepare for end-of-life, with over 60% of British Columbians who
identify their doctor as their preferred first point of contact and nearly 80% who want their
family doctor coordinating their care (British Columbia Medical Association, 2012, p. 18);
this reinforces the importance of general practitioners’ participation in family meetings as
trusted advisors for the family. However, while these data suggest that family meetings
can help to ensure better pain and symptom management, it remains unclear whether
this option provides greater ability to achieve dying seniors’ emotional needs, or honour
wishes for death. Creating the opportunity to improve in these areas is also contingent
on being able to identify and ensure that the appropriate health care professionals
participate in the meetings (Hudson et al., 2009). Therefore, this option scores low (1) in
being able to achieve a good death at home.
Financial cost: Evidence suggests that most health professionals do not receive
sufficient training to conduct family meetings; as such, it would be prudent to develop
training focused on preparing health care workers for conducting family meetings in
palliative care (Fineberg, 2005). Training and development for health care providers has
been proposed in the literature in areas such as meeting design: clarifying the purpose
of meetings, obtaining genuine and documented informed consent from the patient and
family, and ensuring good opportunities and support for patients and families to express
their own views during the meeting (Griffith et al., 2004). The cost to develop and deliver
training programs can be highly variable, depending on the breadth and type of material,
level of interactivity, and simulations required (Kapp & Defelice, 2009). However, there is
existing literature identifying gaps in clinicians’ ability to conduct family meetings and
educational interventions; these studies can serve to inform the development of training
for Vancouver-City Centre health care providers. As such, a moderate financial
investment is expected in implementing this policy; the criterion of cost therefore scores
medium (2).
61
Implementation complexity: In practice, family meetings already require a
significant time investment which can be challenging given palliative health care
providers’ current workloads (Hannon et al., 2012). As well, part of the challenge in
organizing effective family meetings is the lack of clinical evidence demonstrating the
process for training staff to conduct or participate in family meetings (Fineberg, 2005).
Also claimed is a dearth of literature describing when such meetings should be initiated,
who should attend them, and how they should be conducted and evaluated (Griffith et
al., 2004). Further, there is conflicting evidence to suggest whether trying to
accommodate the schedules of all involved is a significant problem. While there is some
concern with regards to the scheduling of family meetings (Palliative Health Care
Professional, interview, 2014, January 7), literature suggests greater levels of
satisfaction with family meetings amongst health care professionals can be achieved so
long as meetings are tailored to the needs of each family (Hannon et al., 2012).
Regardless, this disparity in findings suggests significant challenges in shifting
institutional practice to create an environment which promotes the increased frequency
of family meetings. As a result of significant administration required to implement the
policy, this option scores low (1) for implementation complexity.
7.1.4.
Create local, community-based services and support
networks
The research suggests that programs offered by specialist organizations, such as
support groups or volunteer drivers through the BC Cancer Agency (Caregiver 1,
interview, 2013, November 28; Palliative Health Care Professionals, interviews, 2013,
December 4 and 16), or care coordination services provided by the Alzheimer Society of
B.C. (Palliative Health Care Professional, interview, 2013, December 4), may be good
support models to emulate. However, these resources are available exclusively to those
with cancer or dementia, which excludes seniors at end-of-life diagnosed with all other
life-limiting conditions from receiving these types of support (Palliative Health Care
Professionals, interviews, 2013, December 3 and 4). As well, findings revealed that
support preferences can vary widely (Caregiver 2, interview, 2013, November 28;
Caregiver 4, interview, 2014, January 14), implying that bespoke programs may be more
effective in ensuring enough breadth in resources for informal caregivers. The United
62
Way of the Lower Mainland (2011) provides grants to non-profit, community-based
organizations offering support programs for informal caregivers, but the scope of these
programs can be limited based on the ability of groups to meet specific funding criteria
and conditions, and their capacity to offer programming.
Creating or expanding individualized community-based services is dependent on
two things: the needs of the community being served, but also the capacity of those
within the community to coordinate, decide and deliver resources and services. For
these reasons, health co-operatives have been used in this section as the basis for
evaluating the policy option. By definition, a co-operative is “an organization owned by
the members who use its services or are employed there” (Canadian Co-operative
Association, 2008). In terms of service provision, co-operatives can have a local focus
and provide services within a small geographic area, or across large and multiple
regions; they can be organized as small clinics or as a complex, integrated networks
(Girard, 2009).
Health co-operatives exist in Canada and worldwide, and can “include, but are
not limited to, any combination of: primary health clinics; integrated health clinics,
ambulance services; home care; information and education; health promotion; group
purchasing of health supplies; mental health facilities; and health insurance” (PanayotofSchaan, 2009, p. 7). However, common attributes of health co-operatives are their intent
to fill missing gaps in health care systems as well as emphasize user responsibility
(Panayotof-Schaan, 2009).
Access to Resources: Evidence shows that health co-operatives create many
benefits to seniors at end-of-life and informal caregivers: it is more possible for seniors to
remain in their own communities, the non-profit structure allows more affordable service,
and higher quality of care can be achieved (Restakis, 2008). Québec’s network of cooperatives has strong support from the government, which has committed to paying a
portion of the hourly fee required by home support services; the balance is paid by the
health co-operative member, with the total amount required dependent on the income
level and health status of each individual (Girard, 2009). This can assure access to
resources insofar as the entire cost of services does not have to be borne by elderly
patients or informal caregivers. As well, the ability for health co-operatives to define the
63
services offered can ensure that portfolios include items such as personal care or respite
services for family members (Girard, 2009).
However, the success of the health co-operative is highly dependent on the
commitment of its members and volunteers (Restakis, 2008). In addition, there exist two
significant limitations:
•
Very few co-operatives offer long-term care despite the current challenges in
long-term care delivery, including the cost of services, quality, and continuity
of care; and
•
Few co-operatives offer acute, ambulatory, and advanced diagnostics, even
though regional health organizations may contract with for-profit or other
third-sector organizations to deliver these services.
(Marchildon, 2009, p. 20)
There may be a role for these types of health co-operatives in Canada, but the reasons
for limited delivery of these services are unknown. While the potential for this policy to
significantly increase access to resources is high, the services needed by informal
caregivers would take time to design, develop and implement. Further, the current lack
of long-term, ambulatory, and advanced diagnostic services under the health cooperative model, which would positively affect seniors’ health care, suggests little desire
by governments and Canadians to develop these models. For these reasons, expanding
community-based services scores medium (2) in being able to increase access to
resources.
Minimization of caregiver burden: Home care is a commonly provided service
to health co-operative members in Canada. A home care health co-operative in Quebec,
for example, provides services such as light and heavy housekeeping, clothing care,
meal preparation, running errands, accompanying seniors during medical appointments,
and providing respite care to informal caregivers (Restakis, 2008), and individuals from
this co-operative rate the quality of the services received very positively (Leviten-Reid,
2009). Health co-operatives have been shown to reduce overall health care costs to the
patient and family (Restakis, 2008) and, being member driven, exhibit great potential to
innovate and respond to the needs of the community. For example, a community clinic in
Saskatchewan created a service to operate a bus providing clients with transportation to
64
and from clinic appointments (Fairbairn, 2009); given that transportation emerged as a
significant burden to informal caregivers in this study, it is reasonable to infer that the
same could occur in Vancouver-City Centre. As well, health co-operatives in Japan
have been proven to encourage peer support (Panayotof-Schaan, 2009), providing an
avenue to mitigate psychological strain. While there is a lack of evidence to support the
notion that health co-operatives can alleviate employment risks to informal caregivers,
they are proven to minimize other significant burdens. Therefore, this option scores
medium (2).
Good death: Health co-operatives have the latitude to decide which services to
provide, resulting in tailored services based on the needs of its members (Doucette,
2009). Innovative approaches include an interprofessional approach to providing care,
meaning “clients not only have access to doctors but to different services within each
clinic, including counseling, physical and occupational therapy, and services provided by
nutritionists and diagnostic technicians” (Fairbairn, 2009, p. 17). In Japan, health cooperative volunteers are trained to undertake a range of regular community health
checks, including tests for individuals’ blood pressure, weight, diabetes, and more – the
results of which are then forwarded to a health professional within the co-operative for
further analysis and follow up (Restakis & Filip, 2008). This type of operation helps to
keep costs down while “keeping a close watch on evolving health issues as they emerge
in a particular community” (Restakis & Filip, 2008, p. 6). As well, health care cooperatives have the ability to reduce hospitalization rates for seniors living in cooperative settings; this suggests that the co-operative model has significant potential to
ensure seniors at end-of-life are able to remain at home and out of acute care (Restakis,
2008). Studies do not provide specific evidence as to whether pain and symptoms can
be properly managed, if adequate preparation for death can occur, or whether wishes for
death can be honoured. Given the potential, however, to create a flexible and tailored
approach to care, and evidence which shows that dying seniors’ physical and emotional
needs can be met by health co-operatives, this option scores medium (2) in being able
to help seniors achieve a good death.
Financial cost: Funding is a major component in any co-operative. Start-up
funding commonly comes from a variety of sources including private donations or loans
from local credit unions but for health co-operatives, in particular, funding can be
65
secured form local health authorities (Restakis, 2008). However, this source can vary
widely depending on the jurisdiction, the specific policies of regional government health
agencies, and the history between co-ops and the public health sector (Restakis, 2008).
In addition to third-party and government grants, common sources of ongoing funding for
health co-operatives can also include membership fees, rent from health care providers,
and payments by patients using services excluded from health care plans (PanayotofSchaan, 2009). However, some members may not like paying membership fees, and
younger members having less experience with co-ops may not be willing to contribute
(Restakis, 2008). In order to sustain operations of the health co-operative in the long
term, it is imperative to ensure strong financial management and multiple sources of
finding (Panayotof-Schaan, 2009). Because of these challenges and anticipated
significant costs associated with funding health care co-operatives, this policy option
scores low (1) in meeting this criterion.
Implementation complexity: The number of health co-operatives has increased
substantially in the last two decades, suggesting that support from individuals and
governments is growing (Panayotof-Schaan, 2009). However, specific investment
requirements are necessary in creating a health co-operative; as well, mutual trust,
shared decision-making, member participation, and collective risk-sharing are elements
of any type of co-operative (Restakis, 2008). A general lack of knowledge and
understanding of the co-operative model amongst the general public, funders, and
policy-makers has led to a “relatively low number of new co-ops for the provision of
services to seniors” (Restakis, 2008, p. 14). Capital, equipment, business acumen,
managerial expertise, financial expertise, and member and volunteer commitment are
also imperative to the success of the co-operative. Given the significant amount of
administration required in creating a health co-operative, including the need for capital
and financial investment, as well as high involvement and support from stakeholders,
this option scores low (1) for implementation complexity.
66
8.
Recommendations
Based on the analysis of the policy options, the option to provide a single point of
contact for elderly end-of-life patients and their families is the highest rated and is,
therefore, the most viable alternative in resolving the issue that informal caregivers in
British Columbia currently do not have adequate access to resources which would allow
them the greatest opportunity to provide quality care to an elderly family member who
wishes to die at home. Provided below are some thoughts on implementation as well as
future policy considerations.
8.1. Policy Implementation
The concept of patient navigation was used in the analysis, as this role has been
previously piloted at organizations such as the BC Cancer Agency, Cancer Care
Ontario, and Cancer Care Nova Scotia. Learnings from these pilot programs can be
used to create similar initiatives in British Columbia tailored to assist informal caregivers
and seniors diagnosed with a life-limiting condition. These end-of-life patient navigators
would be responsible for coordinating services, attending to the needs of informal
caregivers and elderly patients, as well as helping patients and families access all endof-life care resources which may be of benefit. British Columbia’s pilot patient navigators
should also be expected to assist families with the logistics of getting to and from
appointments, and in dealing with financial impacts, such as drug costs and potential
loss of employment income.
In other jurisdictions, it is often experienced nurses appointed in the patient
navigator role, and there is no reason to deviate from this in an end-of-life pilot program
for British Columbia. Social workers may be considered for these positions; however,
according to interviews with palliative care professionals, they simply do not have the
capacity at the present time due to current caseloads. However, redistribution of
67
workloads from current cases to end-of-life cases may make social workers a possible
alternative to nurses in the patient navigator role. As well, non-professionals who have
experience in caring for seniors at end-of-life may also be suitable for the navigator role,
as findings suggested that informal caregivers often learn about programs, services and
coping strategies from others who have been through a similar situation.
End-of-life patient navigators should be experienced in dealing with elderly,
palliative patients, as sensitivity and responsiveness of health care providers to the
needs of families and seniors is a vital skill in this role. Training for end-of-life patient
navigators should be considered, as this may help to clarify the role for individuals
unfamiliar with the duties of patient navigation. End-of-life patient navigators in British
Columbia can benefit from training focused on the types of end-of-life resources
available, and should be expected to retain a high degree of knowledge of government
funded programs for informal caregivers and seniors at end-of-life; home and community
care within the local health area; equipment sources; how to access resources; and
other ways to mitigate financial, psychological, and physiological to caregivers. Engaging
in continuing professional development will be crucial in ensuring patient navigators can
maintain their expertise and standards of care.
Funding for this pilot program would be required from government. In Ontario, for
example, a pilot was run with 14 provincially funded navigators, with some programs
securing funding from outside of government (Walkinshaw, 2011). The amount of
funding necessary can be derived by using current pay rates for experienced nurses,
determining the number of patient navigators to be created for the pilot, and the length of
time the pilot will be in effect. For a more long-term view, funding following the initial pilot
should be considered in anticipation of keeping patient navigators within the health
system.
To evaluate the outcomes of the pilot, evaluation measures need to be
determined. This can include satisfaction research amongst willing palliative patients and
informal caregivers – those who have received support from the patient navigators. As
well, assessing indicators for good death and the ways in which caregiver burden are
mitigated can reveal whether the pilot with end-of-life patient navigators is successful,
and identify areas for improvement.
68
8.2. Future Policy Considerations
While the policy option to increase the availability and extent of publicly funded
formal home support scored poorly in terms of financial cost and implementation
complexity, it did however, show great potential to minimize caregiver burden and
contribute to elderly end-of-life patients’ ability to experience a good death. The option
would also be expected to create greater access to resources for informal caregivers,
increasing their ability to provide quality home care to seniors at end-of-life. Government
officials, if serious about improving the ability for elderly British Columbians to die at
home, would do well to consider if and how they might be able to actualize this policy
option. One starting point might be to undertake a review of home care to identify gaps
in service delivery: what is currently being provided, what supports do end-of-life patients
and informal caregivers need, and are those needs being met? Having a better
understanding of service areas which are not delivering will help to inform future home
care program designs.
Other steps to consider in moving towards this policy option might be to initiate a
review of physician payment models in order to address the concerns raised by doctors
in delivering home care, as well as a review of the formulas currently used to determine
co-payment by elderly patients and their families in receiving home and community care.
The overall purpose of these reviews would be to identify whether the existing models
are appropriate and how they might adapt, if the availability and extent of publicly funded
formal home care was to increase.
69
9.
Discussion of Limitations and Future
Research
While this study examines provincial end-of-life policy, it undertook an in-depth
analysis of only a single local health area in British Columbia: Vancouver-City Centre,
which has a high population density and generally well-established home and
community care programs. As such, the results presented here are expected to have
greater relevance for other urban areas in British Columbia versus that of rural or remote
communities. While patient navigators may be able to assist end-of-life seniors in less
populated areas, further study is necessary to determine how this type of policy can be
tailored to best suit rural populations and remote contexts versus that of urban
populations.
As well, this research was unable to include the perspectives of those working
within Vancouver-City Centre’s Community Care teams; these individuals are the
frontline workers dealing directly with informal caregivers and seniors at end-of-life on a
daily basis. It is therefore recommended that future research in this area aim to evaluate
practices being done specifically by these individuals.
This study also does not consider palliative patients with behavioural issues or
mental illness. This group of people appears at risk of not being accepted into hospices
due to their required levels of care, and there are little, if any, resources in place to
support this group in the absence of an informal caregiver who can provide care in a
home setting (M. Giesbrecht, email message to author, 2013, July 15). Additionally,
there is an opportunity to explore the effects of end-of-life policy on marginalized
population groups such as cultural minorities and Aboriginal populations, those who live
alone, or do not have family able to care for them (M. Giesbrecht, email message to
author, 2013, July 15).
70
The findings from this study suggest that more research is needed with respect
to differences in access to end-of-life care and resources for immigrant individuals, those
whose first language is not English, and those of poorer socioeconomic status. The
results imply that it may be useful to consider tailored end-of-life services for specific
palliative illness trajectories – dementia or Alzheimer’s versus cancer versus other lifelimiting conditions, for example. The design of this research study did not lend itself to
examining these populations or illness-specific care in any detail. However, future
research may wish to consider delving into these matters further.
71
10. Conclusions
The shift in philosophy amongst health care providers and the general public
towards a home is best mentality is becoming widely accepted, yet this study proves that
not enough is being done to support families providing informal care, or seniors who
desire a home death. Given the increased risks of institutionalization for dying seniors or
multiple trips to emergency when their family caregivers cannot manage, a proactive
stance to end-of-life care can help to alleviate demands on formal health systems and
mitigate costly acute services.
Providing a single point of contact to assist dying seniors and informal caregivers
in navigating the health care system after the patient has been diagnosed with a lifelimiting illness is one way to balance the responsibilities between formal and informal
systems. Limited uptake of existing resources indicates a lack of awareness amongst
those who may require these services; a patient navigator can help to coordinate
resources and ensure patients and families are receiving all supports available to them,
resulting in a more efficient use of programs currently being provided by the public
system. Initiating a pilot program in British Columbia for end-of-life patient navigators is
recommended to better assist informal caregivers in their role. Governments should also
consider how to move forward with increasing the availability and extent of publicly
funded formal home support, as this policy option shows significant potential in
mitigating caregiver burden and helping seniors at end-of-life achieve a good death at
home.
As retired college professor Morrie Schwartz once said, “Death is the great
equalizer” (Albom, 1997). However, to ensure all Canadians can receive quality end-oflife care, many inequalities will need to be addressed. This research supports the view
that shifting the responsibility of end-of-life care from formal to informal systems cannot
be done responsibly without providing adequate support to family caregivers in fulfilling
their care duties. Only with adequate access to programs and resources can it be
72
assured that seniors at end-of-life will be able to experience a good death at home.
Governments will need to decide their role, what needs to change, and to what extent
they are willing to support Canadians through this inevitable journey we all must face.
73
References
Ackenhusen, M. (2011, October 31). Why I believe “Home is best”. Message posted to
http://upfordiscussion.vchblogs.ca/2011/10/why-i-believe-home-is-best/
Ajemian, I., & Mount, B.M. (Eds.). (1980). The R.V.H. manual on palliative/hospice care:
A resource book. New York: Arno Press.
Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life's greatest
lesson. New York: Doubleday.
BC Cancer Agency. (2005). Patient navigation in cancer care: Final report.
Sociobehavioural Research Centre.
BC Stats. (2012). British Columbia population projections 2012 - 2036.
BC Stats. (2013a). 2012 sub-provincial population estimates. Province of British
Columbia.
BC Stats. (2013b). Reference maps: Interactive health geographies. Retrieved October
14, 2013, from
http://www.bcstats.gov.bc.ca/statisticsbysubject/geography/referencemaps/Healt
h.aspx
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative
Research in Psychology, 3(2), 77-101. doi:10.1191/1478088706qp063oa
British Columbia Medical Association. (2012). Charting the course: Designing British
Columbia’s health care system for the next 25 years.
British Columbia Ministry of Health. (2006a). Joint protocol for expected/planned home
deaths in British Columbia.
British Columbia Ministry of Health. (2006b). A provincial framework for end-of-life care.
Victoria, British Columbia:
British Columbia Ministry of Health. (2007). Chronic disease projection analysis. Medical
Services Division.
British Columbia Ministry of Health. (2012a). BC palliative care benefits program. (No.
PlanP-01). Victoria: Pharmaceutical Services Division.
74
British Columbia Ministry of Health. (2012b). FACTSHEET: Nurses in B.C. Retrieved
March 1, 2014, from
http://www.newsroom.gov.bc.ca/ministries/health/factsheets/factsheet-nurses-inbc.html
British Columbia Ministry of Health. (2013a). BC palliative care benefits program.
Retrieved October 14, 2013, from
http://www.health.gov.bc.ca/pharmacare/outgoing/palliative.html
British Columbia Ministry of Health. (2013b). Caring for seniors. Retrieved October 17,
2013, from
http://www2.gov.bc.ca/gov/topic.page?id=0A0832CB6AD5471AAAEFC7E6988D
3896
British Columbia Ministry of Health. (2013c). End-of-life care. Retrieved October 17,
2013, from
http://www2.gov.bc.ca/gov/topic.page?id=D10E41FBBCBC4F65B3F9F646BEFB
7642
British Columbia Ministry of Health. (2013d). Expected/planned home deaths. Retrieved
October 17, 2013, from
http://www2.gov.bc.ca/gov/topic.page?id=E588F7E3DD4D441697AFCCC87CF8
2150
British Columbia Ministry of Health. (2013e). My voice - expressing my wishes for future
health care treatment. Retrieved May 20, 2013, from
http://www.health.gov.bc.ca/library/publications/year/2013/MyVoiceAdvanceCarePlanningGuide.pdf
British Columbia Ministry of Health. (2013f). The provincial end-of-life care action plan
for British Columbia: Priorities and actions for health system and service
redesign.
Brown, C.A., Belfield, C.R., & Field, S.J. (2002). Learning in practice. Cost effectiveness
of continuing professional development in health care: A critical review of the
evidence. British Medical Journal, 324, 652-655.
doi:http://dx.doi.org/10.1136/bmj.324.7338.652
Canada Employment Insurance Commission. (2013). 2012 EI monitoring and
assessment report. (No. CEIC-001-03-13E). Gatineau.
Canada Mortgage and Housing Corporation. (2008). Impacts of the aging of the
Canadian population on housing and communities. (Socio-economic Series Issue
08-003).
Canadian Caregiver Coalition. (2004). Framework for a Canadian caregiving strategy.
(No. 1702-7160).
Canadian Co-operative Association. (2008). What is a co-operative? Retrieved March 1,
2014, from http://www.coopscanada.coop/en/about_co-operative/about_co-ops
75
Canadian Health Services Research Foundation. (2003). Mythbusters: The cost of dying
is an increasing strain on the healthcare system. Retrieved from http://www.cfhifcass.ca/Libraries/Mythbusters/Myth_CostOfDying_EN_FINAL.sflb.ashx
Canadian Home Care Association. (2010). High impact practices. home first: Maximizing
use of investments while creating better outcomes for seniors and reducing ALC.
Canadian Institute for Health Information. (2010). Supporting informal caregivers - the
heart of home care.
Canadian Institute for Health Information. (2011a). Health care cost drivers: The facts.
Ottawa.
Canadian Institute for Health Information. (2011b). Health care in Canada, 2011: A focus
on seniors and aging. Retrieved from
https://secure.cihi.ca/free_products/HCIC_2011_seniors_report_en.pdf. Ottawa.
Canadian Study on Health and Aging. (1994). Patterns of caring for people with
dementia in Canada. Canadian Journal on Aging, 13, 470-487.
Cancer Care Nova Scotia. (2004). Cancer patient navigation: Evaluation findings. (No.
461-7005Q).Province of Nova Scotia.
Cancer Care Ontario. (2013). Patient navigation pilot project. Retrieved February 14,
2014, from
https://www.cancercare.on.ca/cms/One.aspx?portalId=1377&pageId=82880#
Carstairs, S. (2005). Still not there. Quality end-of-life care: A progress report.
Carstairs, S., & Beaudoin, G.A. (2000). Quality end-of-life care: The right of every
Canadian. Parliament of Canada.
Carstairs, S. (2010). Raising the bar: A roadmap for the future of palliative care in
Canada. Ottawa, Ont: Senate of Canada.
Carstairs, S., & Keon, W.J. (2009). Canada’s aging population: Seizing the opportunity.
Ottawa: Special Senate Committee on Aging. Retrieved from
http://www.parl.gc.ca/Content/SEN/Committee/402/agei/rep/AgingFinalReporte.pdf
Chant, S. (2011, October 31). Why I believe “Home is best” comments. Message posted
to http://upfordiscussion.vchblogs.ca/2011/10/why-i-believe-home-is-best
Chappell, N.L., & Penning, M.J. (2005). Family caregivers: Increasing demands in the
context of 21st century globalization . In Johnson (Ed.), The Cambridge
handbook of age and aging (pp. 455-462). Cambridge, UK: Cambridge University
Press.
Chappell, N.L. (2008). Comparing caregivers to older adults in shanghai. Asian Journal
of Gerontology and Geriatrics, 3(2), 57-65.
76
Chappell, N.L. (2011). Population aging and the evolving care needs of older
Canadians: An overview of the policy challenges. (No. 21). Montreal, Quebec:
Institute for Research on Public Policy.
Chappell, N.L., Gee, E., McDonald, L., & Stones, M. (2003). Aging in contemporary
Canada. Toronto: Prentice Hall.
Collier, R. (2011). Federal parties target home care. Canadian Medical Association
Journal, 183(8), E451-452. doi:10.1503/cmaj.109-3856
Conkling, V.K. (1989). Continuity of care issues for cancer patients and families. Cancer,
64(S1), 290-294. doi:10.1002/1097-0142(19890701)64:1+<290::AIDCNCR2820641324>3.0.CO;2-K
Cranswick, K., & Dosman, D. (2008). Eldercare: What we know today. Canadian Social
Trends, (86), 49-57. Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=35883576&site
=ehost-live
Cunningham, C.M., Hanley, G.E., & Morgan, S. G. (2011). Income inequities in end-oflife health care spending in British Columbia, Canada: A cross-sectional analysis,
2004-2006. International Journal for Equity in Health, 10(12)
de Frias, C.M., Tuokko, H., & Rosenberg, T. (2005). Caregiver physical and mental
health predicts reactions to caregiving. Aging and Mental Health, 9(4), 331-336.
de Jong, J.D., & Clarke, L.E. (2009). What is a good death? Stories from palliative care.
Journal of Palliative Care, 25(1), 61-7. Retrieved from
http://search.proquest.com.proxy.lib.sfu.ca/docview/214201077?accountid=1380
0
Doucette, A. (2009). Co-operative clinics in Saskatchewan: Their evolving role in primary
care. In C. Leviten-Reid (Ed.), The role of co-operatives in health care: National
and international perspectives (Saskatoon ed., pp. 14-15). University of
Saskatchewan: Centre for the Study of Co-operatives.
Dudgeon, D.J., & Kristjanson, L. (1995). Home versus hospital death: Assessment of
preferences and clinical challenges. Canadian Medical Association Journal,
152(3), 337-340.
Economist Intelligence Unit. (2010). The quality of death: Ranking end-of-life care across
the world. The Economist.
Evans, R.G., McGrail, K.M., Morgan, S.G., Barer, M.L., & Hertzman, C. (2001).
Apocalypse no: Population aging and the future of health care systems.
Canadian Journal on Aging, 20(Supplement S1), 160.
doi:10.1017/S0714980800015282
77
Fairbairn, B. (2009). Does governance matter? innovation in Saskatchewan community
clinics, 1962-present. In C. Leviten-Reid (Ed.), The role of co-operatives in health
care: National and international perspectives (Saskatoon ed., pp. 16-17).
University of Saskatchewan: Centre for the Study of Co-operatives.
Fairclough, N. (1995). Critical discourse analysis: Papers in the critical study of
language. London;New York: Longman.
Fast, J., Lero, D., Duncan, K., Dunlop, C., Eales, J., Keating, N., & Yoshino, S. (2011).
FACTS: Employment consequences of family/friend caregiving in Canada.
Edmonton, Alberta: Research on Aging, Policies and Practice.
Fast, J., Niehaus, L., Eales, J., & Keating, N. (2002). A profile of Canadian chronic care
providers. Edmonton, Alberta: Research on Aging, Policies and Practice.
Fineberg, I.C. (2005). Preparing professionals for family conferences in palliative care:
Evaluation results of an interdisciplinary approach. Journal of Palliative Medicine,
8(4), 857-866. doi:10.1089/jpm.2005.8.857
Fisher, R., Ross, M.M., & MacLean, M.J. (2000). A guide to end-of-life care for seniors.
University of Toronto and University of Ottawa.
Giesbrecht, M. (2013). Placing the intersection: A qualitative exploration of formal and
informal palliative caregiving in the home. (Doctor of Philosophy, Simon Fraser
University).
Giesbrecht, M., Crooks, V.A., & Williams, A. (2010). Scale as an explanatory concept:
Evaluating Canada’s Compassionate Care Benefit. Area, 42(4), 457-467.
doi:10.1111/j.1475-4762.2010.00941.x
Girard, J. (2009). Health care co-operatives in the USA and Canada. In C. Leviten-Reid
(Ed.), The role of co-operatives in health care: National and international
perspectives (Saskatoon ed., pp. 11-13). University of Saskatchewan: Centre for
the Study of Co-operatives.
Government of Canada. (2004). First minister's meeting on the future of health care
2004: A 10-year plan to strengthen health care. Retrieved March 4, 2014, from
http://www.hc-sc.gc.ca/hcs-sss/delivery-prestation/fptcollab/2004-fmm-rpm/indexeng.php
Government of Canada. (2013). Compassionate care benefits: Employment insurance
(EI) frequently asked questions. Retrieved March 24, 2013, from
http://www.servicecanada.gc.ca/eng/ei/faq/faq_compassionate_care_individuals.
shtml#qualify
Griffith, J.C., Brosnan, M., Lacey, K., Keeling, S., & Wilkinson, T.J. (2004). Family
meetings - a qualitative exploration of improving care planning with older people
and their families. Age and Ageing, 33, 577-581. doi:10.1093/ageing/afh198
78
Hannon, B., O'Reilly, V., Bennett, K., Breen, K., & Lawlor, P.G. (2012). Meeting the
family: Measuring effectiveness of family meetings in a specialist inpatient
palliative care unit. Palliative & Supportive Care, 10(1), 43-49.
doi:10.1017/S1478951511000575
Health Canada. (2007). Canadian strategy on palliative and end-of-life care - final report
of the coordinating committee. Ottawa: Health Canada. Retrieved from
http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpb-dgps/pdf/pubs/2007-soin_finend_life/2007-soin-fin-end_life-eng.pdf
Health Council of Canada. (2014). Where you live matters: Canadian views on health
care quality. (Bulletin 8).
Health Council of Canada. (2012). Seniors in need, caregivers in distress: What are the
home care priorities for seniors in Canada? Toronto.
Hollander, M.J., Liu, G., & Chappell, N.L. (2009). Who cares and how much? The
imputed economic contribution to the Canadian healthcare system of middleaged and older unpaid caregivers providing care to the elderly. Healthcare
Quarterly, 12(2), 42-49.
Hoover, M., & Rotermann, M. (2012). Seniors' use of and unmet needs for home care,
2009. (No. 82-003-X). Ottawa: Statistics Canada.
Hudson, P., Thomas, T., Quinn, K., & Aranda, S. (2009). Family meetings in palliative
care: Are they effective? Palliative Medicine, 23, 150-157.
doi:10.1177/0269216308099960
Jacobs, K. (2006). Discourse analysis and its utility for urban policy research. Urban
Policy and Research, 24(1), 39-52. doi:10.1080/08111140600590817
Jull, J. (2010). Seniors caring for seniors: Examining the literature on injuries and
contributing factors affecting the health and well-being of older adult caregivers.
Canadian Association of Occupational Therapists.
Kane, R.L. (1990). Health care: Introduction. In R.L. Kane (Ed.), Improving the health of
older people: A world view (pp. 341). New York: Oxford University Press.
Kapp, K.M., & Defelice, R.A. (2009). Time to develop one hour of training . Retrieved
March 1, 2014, from http://www.astd.org/Publications/Newsletters/LearningCircuits/Learning-Circuits-Archives/2009/08/Time-to-Develop-One-Hour-ofTraining
Keating, N., Lero, D.S., Fast, J., Lucas, S., & Eales, J. (2013). A framework and
literature review on the economic costs of care: Final report. Edmonton, Alberta:
Research on Aging, Policies and Practice.
Kodner, D.L., & Spreeuwenberg, C. (2002). Integrated care: Meaning, logic,
applications, and implications – a discussion paper. International Journal of
Integrated Care, 2(e12), 1-6.
79
Kvale, S. (2007). Doing interviews. Chapter 5: Conducting an interview. (pp. 51-67)
Sage Publications. doi:10.4135/9781849208963
Lee, M. (2006). Is BC’s health care system sustainable? A closer look at the costs of
aging and technology. Vancouver, B.C: Canadian Centre for Policy Alternatives,
BC Office. Retrieved from
http://www.policyalternatives.ca/sites/default/files/uploads/publications/BC_Office
_Pubs/bc_2006/aging_healthcare.pdf
Leviten-Reid, C. (2009). User participation and quality of home support services. In C.
Leviten-Reid (Ed.), The role of co-operatives in health care: National and
international perspectives (Saskatoon ed., pp. 18-19). University of
Saskatchewan: Centre for the Study of Co-operatives.
Macdonald, M. l. (2012). Synthesis of recommendations from national reports on
hospice palliative care: A discussion paper - May 2012. Ottawa: Canadian
Hospice Palliative Care Association; The Way Forward Integration Initiative.
Marchildon, G. (2009). Looking ahead: Public policy and co-operative health care. In C.
Leviten-Reid (Ed.), The role of co-operatives in health care: National and
international perspectives (Saskatoon ed., pp. 20-22). University of
Saskatchewan: Centre for the Study of Co-operatives.
Mestheneos, E., & Triantafillou, J. (2005). Supporting family carers of older people in
Europe: The pan-European background report. Hamburg, Germany:
EUROFAMCARE.
MetLife Mature Market Institute. (1999). The MetLife juggling act study: Balancing
caregiving with work and the costs involved. New York, NY: Metropolitan Life
Insurance Company.
Miller, J. A., Hollander, M., & MacAdam, M. (2008). The continuing care research project
for Veterans Affairs Canada and the Government of Ontario: Synthesis report.
Victoria: Hollander Analytical Services Ltd.
National Cancer Institute. (2013). Last days of life (PDQ®). Retrieved March 4, 2014,
from
http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/healthprofessio
nal
National Institute for Health and Care Excellence. (2013). Patient and public involvement
policy.
Office of the British Columbia Ombudsperson. (2012). The best of care: Getting it right
for seniors in British Columbia (part 2). Overview. (No. 47).
Panayotof-Schaan, L. (2009). An overview of health co-operatives: A case study
perspective using Canadian and international examples. British Columbia
Institute for Co-Operative Studies, 3(1)
80
Providence Health Care. (2013a). End of life care (palliative care). Retrieved October 17,
2013, from http://www.providencehealthcare.org/end-life-care-palliative-care
Providence Health Care. (2013b). Palliative care: St. Paul’s hospital. (No.
GV.110.P179.PHC). Retrieved from
http://phc.eduhealth.ca/PHC_PDFs/GV/GV.110.P179.PHC.pdf
Providence Health Care. (2013c). Who we are. Retrieved November 21, 2013, from
http://www.providencehealthcare.org/about-providence/who-we-are
Quality End-of-Life Care Coalition of Canada. (2010). Blueprint for action 2010 to 2020.
Ottawa, Ont: Quality End-of-Life Care Coalition of Canada. Retrieved from
http://www.qelccc.ca/media/3743/blueprint_for_action_2010_to_2020_april_2010
.pdf
Restakis, J. (2008). Co-op elder care in Canada: A call to action. British Columbia Cooperative Association.
Restakis, J., & Filip, O. (2008). Enabling policy for health and social co-ops in BC . Port
Alberni: BC-Alberta Social Economy Research Alliance (BALTA).
Robinson, L., & Segal, J. (2013). Hospice & palliative care: Quality of life at the end of
life. Retrieved February 12, 2014, from
http://www.helpguide.org/elder/hospice_care.htm
Ross, M.M., MacLean, M.J., Cain, R., Sellick, S., & Fisher, R. (2002). End of life care:
The experience of seniors and informal caregivers. Canadian Journal on
Aging/La Revue Canadienne Du Vieillissement, 21(01), 137.
doi:10.1017/S0714980800000702
Schuklenk, U., Van Delden, J.J.M., Downie, J., McLean, S.A.M., Upshur, R., &
Weinstock, D. (2011). End‐ of‐ Life Decision‐ Making in Canada: The report by
the Royal Society of Canada expert panel on End‐ of‐ Life Decision‐ Making. (No.
25). Oxford, UK: Blackwell Publishing Ltd. doi:10.1111/j.1467-8519.2011.01939.x
Shepperd, S., Doll, H., Angus, R.M., Clarke, M.J., Iliffe, S., Kalra, L., Wilson, A.D.
(2009). Avoiding hospital admission through provision of hospital care at home: A
systematic review and meta-analysis of individual patient data. Canadian Medical
Association Journal, 180(2), 175-182. doi:10.1503/cmaj.081491
Stajduhar, K., & Cohen, R. (2009). Family carers in palliative care. In P. Hudson, & S.
Payne (Eds.), Family caregiving in the home (pp. 149-168). Oxford: Oxford
University Press.
Stajduhar, K.I. (2013). Burdens of family caregiving at the end of life. Clinical &
Investigative Medicine, 36(3), E121-E126.
Statistics Canada. (2010). 2008/2009 Canadian community health survey (CCHS) healthy aging. Government of Canada.
81
Statistics Canada. (2013). Deaths, estimates, by province and territory. Retrieved
September 30, 2013, from http://www.statcan.gc.ca/tables-tableaux/sumsom/l01/cst01/demo07a-eng.htm
Steinhauser, K.E., & Clipp, E.C. (2000). In search of a good death: Observations of
patients, families, and providers. Annals of Internal Medicine, 132(10), 825-832.
Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=3650642&site=
ehost-live
Stephens, M.A., Kinney, J.M., & Ogrocki, P.K. (1991). Stressors and well-being among
caregivers to older adults with dementia: The in-home versus nursing home
experience. Gerontologist, 31, 217-223.
Thomas, P., Chantoin-Merlet, S., Hazif-Thomas, C., Belmin, J., Montagne, B., Clément,
J., Billon, R. (2002). Complaints of informal caregivers providing home care for
dementia patients: The pixel study. International Journal of Geriatric Psychiatry,
17(11), 1034-1047. doi:10.1002/gps.746
Tolson, M., & Evoy, B. (2005). Regional strategy: Palliative/end-of-life/hospice care
services. Vancouver Coastal Health.
Topf, L., Robinson, C.A., & Bottorff, J.L. (2013). When a desired home death does not
occur: The consequences of broken promises. Journal of Palliative Medicine,
26(8), 875-890. doi:10.1089/jpm.2012.0541
Turcotte, M. (2013). Family caregiving: What are the consequences? (No. 75-006-X).
Ottawa: Statistics Canada.
Turner, A., & Findlay, L. (2012). Informal caregiving for seniors. (Vol. 23, no. 3,
catalogue no. 82-003-X). Ottawa: Statistics Canada.
United Way of the Lower Mainland. (2011). Senior Caregiver/Caregiving grants 2011-12.
Call for applications: Criteria and process.
Vancouver Coastal Health. (2013a). Case management. Retrieved January 30, 2014,
from
https://www.vch.ca/your_health/health_topics/case_management/case_manage
ment
Vancouver Coastal Health. (2013b). Home & community care. Retrieved October 17,
2013, from
http://www.vch.ca/your_health/seniors/home_%26_community_support/
Vancouver Coastal Health. (2013c). Home and community care: Eligibility. Retrieved
January 25, 2014, from
https://www.vch.ca/your_health/health_topics/home_and_community_care/eligibil
ity/eligibility
82
Vancouver Coastal Health. (2013d). Home care nursing. Retrieved January 30, 2014,
from
https://www.vch.ca/your_health/health_topics/home_care_nursing/home_care_n
ursing
Vancouver Coastal Health. (2013e). Quick facts: Snapshot of Vancouver Coastal Health.
Retrieved November 21, 2013, from http://www.vch.ca/about_us/quick-facts/
Vancouver Coastal Health Research Institute. (2012). Fast facts on VCH Research
Institute. Retrieved November 21, 2013, from http://www.vchri.ca/media/fastfacts-vch-research-institute
Vancouver Island Health Authority. (2011). Job details: Patient navigator, colon
screening clinic. Retrieved March 1, 2014, from
https://viha.hua.hrsmart.com/ats/js_job_details.php?reqid=18552
Walker, B.L., Osgood, N.J., Richardson, J.P., & Ephross, P.H. (1998). Staff and elderly
knowledge and attitudes toward elderly sexuality. Educational Gerontology,
24(5), 471-89.
Walkinshaw, E. (2011). Patient navigators becoming the norm in Canada. Canadian
Medical Association Journal, 183(15), E1109-1110. doi:10.1503/cmaj.109-3974
Webster, P.C. (2011). Better home care and better pay for doctors urged at CMA town
hall. Canadian Medical Association Journal, 183(6), E319-320.
doi:10.1503/cmaj.109-3831
Woods, N.F., & Catanzaro, M. (1988). Nursing research: Theory and practice. Mosby,
Philadelphia, PA:
Yin, R.K. (2003). Case study research. design and methods (3rd ed.). Thousand Oaks:
Sage Publications.
83
Appendices
84
Appendix A.
Details for Discourse Analysis Methodology
Discourse analysis is an analytical framework used by researchers to critically
examine the use of text and language, particularly to gain insights into “the ways in
which language is used to pursue political and organizational objectives as well as how
policy documents are interpreted by their intended audience” (Jacobs, 2006, p. 40). In
this capstone, a critical discourse analysis was used to analyze provincial policies
focused on the delivery of end-of-life care for seniors. Analysis was conducted by
considering the three dimensions of the critical discourse analysis framework: the
discursive practice of written language texts to undercover underlying messages and
how this feeds into debate; a text analysis to contextualize the production, distribution
and consumption of text; and social practice, exploring discursive events as instances of
power and ideology (Fairclough, 1995). By this method, it was possible to identify
dominant discourses which prescribe particular care practices either supporting or
restraining the ability of informal caregivers to provide quality end-of-life care to seniors
who wish to die at home.
85
Appendix B.
Details for Case Study Analysis Methodology
Case study analysis allows for exploration of individuals and organizations,
simple through complex interventions, relationships, communities, and programs (Yin,
2003). Descriptive case study analysis can be employed in order to describe the
intervention and the real-life context in which it occurred (Yin, 2003). Based on the
critical components of case study research design (Yin, 2003), study propositions were
developed to focus attention on specific items to be examined within the scope of study;
these are shown in Table 6 below.
Table B1.
Case Study Propositions
Proposition
Source
Informal caregivers are burdened by out-of-pocket medical
expenses related to home care e.g. medications, specialist
treatment or consultations
(HCC, 2012; Keating et al., 2013, p. 7)
Informal caregivers are burdened by out-of-pocket expenses
related to required in-home care e.g. hours capped for home
nursing care
(HCC, 2012)
Informal caregivers have to often pay out-of-pocket for respite
services
(MoH, 2013a; Chappell, 2011, p. 13)
Informal caregivers often experience distress or burnout as a
result of their caregiving duties
(CIHI, 2011b, p. x; HCC, 2012, p. 28;
Statistics Canada, 2010; Turner &
Findlay, 2012, p. 3)
Informal caregivers are often ill-prepared by or do not have
access to help from professional health care providers when
agreeing to take care of a dying senior at home
(Topf et al., 2013, p. 876)
Seniors at end-of-life are not accessing palliative care
programs for which they are eligible
(MoH, 2013f, p. 7)
Seniors at end-of-life experience difficulty in acquiring
necessary medical supplies, equipment, and medications
under the BC Palliative Care Program
(MoH, 2012a, p. 2)
A cross-case synthesis was employed by linking case study data with the
propositions using the criteria found in Table 7. These criteria were chosen based on the
86
home-based care guidelines as provided in the Ministry of Health's 2006 Provincial
Framework for End-of-Life Care. Interpretation of the findings was conducted by
determining how well each case was able to match or meet these guidelines. Word
tables were created to display the data from the individual cases according to this
uniform framework, allowing for exploration of overall patterns and outcomes of interest
in drawing cross-case conclusions (Yin, 2003).
Table B2.
Criteria for Interpreting the Case Study Findings
Criteria
Description
Preparation and Advance
Care Planning
• care providers begin the process of preparing the patient and family for
the end of life and the decisions they will need to make along the way;
• providing families and individuals with information;
• referring to available services;
• deciding on likely members of care team;
• identifying roles of patient and family members;
• determining means of communication and coordination of services;
• provide info and resources to support ACP (understanding of options,
providing instructions for treatment, choices for end-of-life care)*
Pain and Symptom
Management
Psychosocial, Spiritual and
Bereavement Support
Support for Informal
Caregivers
Financial Support
• providing pain and symptom management to patient;
• primary care providers consult with specialist clinicians;
• palliative specialist involvement when necessary
•
•
•
•
provision of these services by community groups;
clarity of roles;
regular communication;
sensitivity and responsiveness to patient and family members' needs
for coping
• access to (flexibility of) respite services;
• access to home support for personal care and household needs;
• around the clock care in near-death stage
• health team assists with BC Palliative Care Benefits Program
enrolment;
• access to program is equitable (availability of medications)*
*starred items denote congruence with 2013 Provincial End-of-Life Care Action Plan
Sources: (MoH, 2006b; MoH, 2013f)
87
Multiple units of analysis were used to provide in-depth information into the
issues under investigation (Woods & Catanzaro, 1988); these included health
authorities’ publicly available strategy documents, reports and descriptions, as well as
verbal accounts from palliative health care professionals working within Vancouver CityCentre’s agencies of Vancouver Coastal Health and Providence Health Care.
Three palliative health care professionals from Vancouver Coastal Health and
four from Providence Health Care were interviewed between November 2013 and
January 2014. These individuals were recruited either directly through email, or by
referral from another health care professional working within the local health area. All
palliative health care workers were told of the purpose of the study and why their input
was being requested. Their input was used to help provide insight and context into endof-life care service delivery, and the local health area’s ability to support end-of-life
seniors and their informal caregivers in ensuring quality home care. Compensation for
participating in interviews was not offered.
Speaking with front line palliative care experts also served to discern the ways in
which current end-of-life policies are effective and where improvements can be realized.
A semi-structured interview format was chosen to cover a sequence of topics in
response to prepared questions, while allowing “openness to changes of sequence and
question forms in order to follow up the answers given and the stories told by the
interviewees” (Kvale, 2007, p. 65). This enabled a measure of flexibility in the discussion
with interview participants, based on individual experiences and stories shared.
Interviews were approximately an hour in length, and occurred in the place of each
participant’s choice. General topics discussed included: the role of the informal
caregiver; information needs; impacts to caregiver’s personal and work life; day-to-day
tasks; medical equipment and medications; and access to medical professionals and
other needed resources.
88
Appendix C.
Sample Interview Schedule: Palliative Health Care
Professionals
Sample Discussion Topic
Sample Questions
The role of the informal caregiver
• In your experience, do you find that families are increasingly
taking up the caregiving role for someone who is at end-of-life?
Why do you say that?
Initial information needs
• Please describe what happens when you have a discussion
with a family about end-of-life care options. How does this
normally initiate? What is discussed?
• What questions do caregivers have when considering whether
or not to provide home care to their family member?
Impact to caregiver’s personal and
work life
• What types of changes do caregivers typically have to make in
order to care for their family member?
Day-to-day tasks
Medical equipment and medications
Additional expenses
• What are the daily tasks that a home caregiver might be
responsible for?
• Please describe the process that is required for a patient and
their caregiver to obtain palliative home care equipment and/or
medication.
• What might informal caregivers have to pay for out-of-pocket
i.e. is there anything not available through the palliative
programs that you find caregivers typically need?
Medical professionals
• After the choice has been made to provide home care to a
person who is at end-of-life, at what stages will caregivers
typically seek your assistance?
• What do they typically need assistance for?
• How do you usually go about helping to get caregivers the help
or information they need?
Other resources
• Beyond government programs, what other resources exist that
can help caregivers provide home care to someone at end-oflife?
• In your opinion, what is needed to ensure caregivers have the
best opportunity to provide home care to a family member who
is at end-of-life?
89
Appendix D.
Details for Interviews with Informal Caregivers
Recruitment of informal caregivers was done through numerous agencies
involved in delivering support programs to informal caregivers. A total of 13 agencies
providing services to family caregivers within the local health area of Vancouver-City
Centre were contacted between November 2013 and January 2014; however, while
many advised they would look into the request, only five were willing to distribute the
information about the study. These organizations used various channels to share the
study details: posting the study information on their website, sharing on their social
media channels, or emailing to specific individuals they felt met the criteria. Potential
interview participants were instructed to contact the principal investigator directly if
interested to participate.
As in speaking with palliative care health professionals, a semi-structured
interview format was employed to gather information while maintaining flexibility in the
discussions based on individuals’ personal experiences and the stories they chose to
share. Interviews were conducted with informal caregivers to assess whether they felt
adequately supported in their role to provide quality home care to a senior at end-of-life.
Data obtained through these interviews has been used to explore caregivers’ positive
and negative experiences of the services and support they required in their role. The
discussions with informal caregivers lasted approximately an hour in length, and all were
conducted in person, at a location of the interview participant’s choosing; this was
typically a coffee shop or a café near to the interviewee’s home or place of work.
General topics discussed included: the informal caregiver’s relationship to person at
end-of-life; day-to-day tasks; medical equipment and medications; additional expenses;
help from medical professionals; impact to personal and work life; and information
needs.
Similar to the analysis of the interviews with palliative health care professionals,
analysis of the data obtained through interviews with informal caregivers was conducted
using thematic analysis. Through this analysis, overarching patterns have been identified
and a rich description of the data set has been provided in order to highlight the
90
predominant or most important themes (Braun & Clarke, 2006) emerging from the
interviews.
91
Appendix E.
Sample Interview Schedule: Informal Caregivers
Discussion Topic
Relationship to person at end-of-life
Day-to-day tasks
Medical equipment and medications
Additional expenses
Sample Questions
• Can you please describe your relationship with the person you
were caring for?
• What were your daily home care tasks?
• What types of equipment and medications were needed by
your family member?
• Please describe the process you went through to obtain those
pieces of equipment and/or medication.
• What, if anything, helped to make that process easier? What
did you find difficult?
• Was there anything that you ended up having to pay for out-ofpocket?
• What were those things? Were you able to afford what you
needed?
Medical professionals
• How often did you seek help or ask for information from a
medical professional?
• What did you typically need assistance for?
• Can you describe how you approached those people? How
easy or challenging was it to get the information or help you
needed?
Impact to personal and work life
• Can you describe what changes you had to make in order to
care for your family member?
Initial information needs
• Please describe what happened when you found out your
family member was at end-of-life. Was there a conversation
with a medical professional? What was discussed?
• Looking back, do you feel you had enough information when
you offered to take care of your family member? Why or why
not?
92
Appendix F.
Ethical Considerations and Approvals
Approvals were obtained from the relevant institutions prior beginning the
research. This included Operational Research Approval from the Vancouver Coastal
Health Authority Research Institute for research conducted at Vancouver General
Hospital (Vancouver Acute), and Institutional approval from the Providence Health Care
Research Institute for St. Paul’s Hospital, as well as approvals from the Office of
Research Ethics at Simon Fraser University.
In order to obtain approvals, a number of ethical considerations were outlined for
ethical submission:
•
Potential risks associated with participating in this study beyond what might
be encountered in the course of daily life were low to none for both informal
caregivers and palliative care experts.
•
The risk of magnitude of harm to the participants resulting from breach of
confidentiality was deemed as low, and was further mitigated by the voluntary
nature to participate in the study, the advance notice of topics to be
discussed during the interviews, and the ability to withdraw from the study at
any time, up until the time data analysis has begun, without consequence.
•
Confidentiality of all research interviewees was maintained, and all were
asked to review and sign informed consent statements prior to participation in
the interviews.
•
Interviews were audio recorded for transcription and analysis purposes. Raw
data was stored securely and were destroyed following data analysis.
Research data will be maintained for a duration of two years from the time the
study is completed, after which time it will be destroyed.
93
Appendix G. Case Study Analysis Word Tables for
Case #1: Vancouver Coastal Health
Criteria
Description
RATING SUMMARY
1. VCH
2. Website text 3. Interviews
Community
on Home &
with palliative
Engagement
Community
care
Report
Care
professionals
Preparation
and Advance
Care
Planning
care providers begin the
process of preparing the patient
and family for the end of life and
the decisions they will need to
make along the way
providing families and
individuals with information
referring to available services
deciding on likely members of
care team
identifying roles of patient and
family members
determining means of
communication and
coordination of services
provide info and resources to
support ACP (understanding of
options, providing instructions
for treatment, choices for endof-life care)
Pain and
Symptom
Management
providing pain and symptom
management to patient
primary care providers consult
with specialist clinicians
palliative specialist involvement
when necessary
Psychosocial,
Spiritual and
Bereavement
Support
provision of these services by
community groups
clarity of roles
regular communication
sensitivity and responsiveness
to patient and family members'
needs for coping
94
Criteria
Description
RATING SUMMARY
1. VCH
2. Website text 3. Interviews
Community
on Home &
with palliative
Engagement
Community
care
Report
Care
professionals
Support for
Informal
Caregivers
Financial
Support
access to (flexibility of) respite
services
access to home support for
personal care and household
needs
around the clock care in neardeath stage
health team assists with BC
Palliative Care Benefits
Program enrolment
access to program is equitable
(availability of medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
95
Criteria
Preparation
and Advance
Care
Planning
Pain and
Symptom
Management
Description
1. VCH Community Engagement Report on a
Regional Palliative/End-of-Life/Hospice Care
Services Strategy
Rating Explanation
care providers begin the
Highlights greater need for families and
process of preparing the
patients to have access to health care
patient and family for the end
providers trained in palliative care, higher levels
of life and the decisions they
of comfort with pallliative care (discussions and
will need to make along the
treatment); experience inconsistent
way
providing families and
Further communication and information
individuals with information
requested by caregivers; preferred methods of
communication varies depending on patient
e.g. family consultations not always desired
referring to available
services
Miscommunication between families/patients,
hospitals and other facilities noted as a
problem
deciding on likely members
of care team
identifying roles of patient
and family members
Same as above
determining means of
communication and
coordination of services
Need for more focus on service coordination;
recommends creating position of one PEHC
Coordinator for each of the HSDAs who would
be responsible for this (suggests more
coordination is needed)
provide info and resources to
support ACP (understanding
of options, providing
instructions for treatment,
choices for end-of-life care)
Not mentioned
providing pain and symptom
management to patient
More education and training needed for family
caregivers
primary care providers
consult with specialist
clinicians
Need for more focus on service coordination;
recommends creating position of one PEHC
Coordinator for each of the HSDAs who would
be responsible for this (suggests more
coordination is needed)
palliative specialist
involvement when necessary
Same as above
Further communication and information
requested by caregivers; preferred methods of
communication varies depending on patient
e.g. family consultations not always desired
96
Criteria
Psychosocial,
Spiritual and
Bereavement
Support
Support for
Informal
Caregivers
Financial
Support
Description
1. VCH Community Engagement Report on a
Regional Palliative/End-of-Life/Hospice Care
Services Strategy
Rating Explanation
provision of these services
Suggests building volunteer capacity to support
by community groups
via respite, in-home care, emotional support
and more
clarity of roles
Social workers able to mediate challenging
situations, provide clarity; however, caregivers
noted greater need to be better educated in
communicating with dying family member,
death and dying process
regular communication
Not mentioned
sensitivity and
Acknowledges that health care providers need
responsiveness to patient
to be senstive in patients and families’ wishes
and family members' needs
in navigating the dying experience but that
for coping
specialized training in these areas is needed;
healthcare staff often overworked and rushed
and therefore not able to be attentive
access to (flexibility of)
Suggests building volunteer capacity to support
respite services
via respite, in-home care, emotional support
and more
access to home support for
Inconsistency of workers coming into the home
personal care and household
is overwhelming for informal caregivers; adds
needs
work and stress
around the clock care in
24-hour nursing care in last days of life
near-death stage
needed, as well as health care professionals
on an emergency basis
health team assists with BC
Not mentioned
Palliative Care Benefits
Program enrolment
access to program is
Not mentioned
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
97
Criteria
Description
2. Website text on Home & Community Care
Rating
Preparation
and Advance
Care
Planning
care providers begin the
process of preparing the
patient and family for the end
of life and the decisions they
will need to make along the
way
providing families and
individuals with information
referring to available
services
Same as above
Case management available to “families who
need help coordinating services to meet their
health care needs”; extent/availability of
assistance unspecified on website
Same as above
deciding on likely members
of care team
identifying roles of patient
and family members
determining means of
communication and
coordination of services
Pain and
Symptom
Management
Same as above
Case management available to “families who
need help coordinating services to meet their
health care needs”; extent/availability of
assistance unspecified on website
Not mentioned
provide info and resources to
support ACP (understanding
of options, providing
instructions for treatment,
choices for end-of-life care)
providing pain and symptom
management to patient
Adult Day Services (fee-based) available to
help with health monitoring and administering
medications; services capped based on
program availability and personal needs
Case management available to “families who
need help coordinating services to meet their
health care needs”; extent/availability of
assistance unspecified on website
Same as above
primary care providers
consult with specialist
clinicians
Psychosocial,
Spiritual and
Bereavement
Support
Explanation
Home Care Nurses provide assessment,
education, counselling, palliative care; all
home care nurses experienced in palliative
care; extent/availability of services unspecified
on website
palliative specialist
involvement when necessary
provision of these services
by community groups
Adult Day Services (fee-based) provides social
programs e.g. discussion and exercise groups;
services capped based on program availability
and personal needs
Home Care Nurses provide assessment,
education, counselling, palliative care; all
home care nurses experienced in palliative
care; extent/availability of services unspecified
on website
Same as above
clarity of roles
regular communication
98
Criteria
Description
2. Website text on Home & Community Care
Rating
Support for
Informal
Caregivers
sensitivity and
responsiveness to patient
and family members' needs
for coping
access to (flexibility of)
respite services
Home Support (costs covered) “provide
assistance with support and relief for your
primary caregiver”; extent/availability of
assistance unspecified on website
Adult Day Services (fee-based) provides help
with personal care e.g. bathing programs;
services capped based on program availability
and personal needs; Home Support (costs
covered) “provide assistance with daily living
activities at home such as bathing, dressing
and grooming…medication administration and
other care needs”; extent/availability of
assistance unspecified on website
Not mentioned
access to home support for
personal care and household
needs
Financial
Support
Explanation
Same as above
around the clock care in
near-death stage
health team assists with BC
Palliative Care Benefits
Program enrolment
Case management team helps to determine
costs and arrange for services;
extent/availability of assistance unspecified on
website; Home Health staff help to determine
needed equipment and how to access/use
From Home Health team: “For the most part
you will be expected to pay for your supplies,
medications and equipment” (for home health
i.e. outside of palliative program); limited
options for having costs covered by other
funding agencies; Choice in Supports for
Independent Living (CSIL) provides direct
funding to patients with high physical care
needs to hire home support workers Instead of
paying a home support agency to provide
services, we provide you with money to hire
your own home support workers (limited
eligibility, outside of palliative program)
access to program is
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
99
Criteria
Description
Preparation
and Advance
Care
Planning
care providers begin the
process of preparing the
patient and family for the end
of life and the decisions they
will need to make along the
way
providing families and
individuals with information
referring to available services
3. Interviews with palliative care professionals
working within Vancouver Coastal Health
Rating
Same as above
If palliative, specialists assigned based on
care needs; if not palliative, seems more
complicated (not enough
collaboration/communication between service
providers)
Same as above
deciding on likely members
of care team
identifying roles of patient
and family members
Done through conversations with family and
patient; attempts to determine family dynamic
and whether home death is realistic
Person within the hospital will often help with
this, but would be useful to have a single point
of contact in most cases; currently, only case
managers or social workers assigned if family
dynamics are problematic versus healthrelated issue
Should be done but can be complicated based
on unpredicable/unknown illness trajectory;
GPs and others not necessarily iniating those
conversations
determining means of
communication and
coordination of services
provide info and resources to
support ACP (understanding
of options, providing
instructions for treatment,
choices for end-of-life care)
Pain and
Symptom
Management
Explanation
This does happen, but often dependent on
sensitivity and health care bias/expertise with
respect to palliation
providing pain and symptom
management to patient
Easier done in hospital than at home;
caregivers in home setting left on own to make
care decisions (can be difficult for some)
If palliative, specialists assigned based on
care needs; if not palliative, seems more
complicated (not enough
collaboration/communication between service
providers)
Palliative health care professionals consulted
often within hospital but perhaps too much e.g.
some basic palliative care could be attempted
by other health professionals before consult
requested
primary care providers
consult with specialist
clinicians
palliative specialist
involvement when necessary
100
Criteria
Description
Psychosocial,
Spiritual and
Bereavement
Support
provision of these services
by community groups
3. Interviews with palliative care professionals
working within Vancouver Coastal Health
Rating
clarity of roles
regular communication
sensitivity and
responsiveness to patient
and family members' needs
for coping
Support for
Informal
Caregivers
Financial
Support
access to (flexibility of)
respite services
access to home support for
personal care and household
needs
around the clock care in
near-death stage
health team assists with BC
Palliative Care Benefits
Program enrolment
Explanation
Offered by organizations like Alzheimer’s
Society and BC Cancer Agency but those are
specific diseases; community groups often
limited to bereavement services
Can be difficult for all members of palliative
team (incl. family and patient) to be clear on
roles, particularly if family desires contrary to
patient wishes; not enough communication
between members of formal care team
(sometimes)
No formal follow up from acute (but not their
role); community support limited; no regular
checks unless part of Home Vive but still
limited with focus on patients only v. family
caregivers
Formal carers trying, but this can be variable
i.e. dependent on health care professional’s
level of expertise, comfort with palliative care
discussions and experience
Some respite services available in community
but onus is on informal caregiver to initiate
Limited support available; capped at maximum
hours per week; conflicting evidence as to
flexibility in requests for service
Resource exists but is not always available;
requires initiation by community nurse
Health team not always aware and/or
encourages families and patients to consider;
“awareness” of program amounts health
professionals does not necessarily translate to
“assisting” with enrolment
Appears equitable as all individuals on
program receive access to same end-of-life
treatment; however, it is required that patients
agree to DNR in order to access program
access to program is
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
101
Appendix H. Detailed Case Study Analysis of
Case #1: Vancouver Coastal Health
Adequate Preparation and Advance Care Planning: Health care services
currently exist within Vancouver Coastal Health to assist elderly patients and families in
preparing for end-of-life, as well as determining whether a home death is a reasonable
option. Home and Community Care offers a number of supports, such as home care
nurses experienced in palliative care who can conduct assessments and provide
education and counselling services to elderly clients (VCH, 2013d). In addition, case
managers are available to help families coordinate services based on their needs (VCH,
2013a). However, these services are restricted to those meeting certain eligibility criteria
relating to citizenship, residency, and care needs (VCH, 2013c); some elderly patients
may therefore be at risk of not receiving adequate support for their life-limiting
conditions.
Discussions about end-of-life are challenging, even for health care professionals
working in palliative care. Families and elderly patients require that care providers be
comfortable to discuss options for treatment and palliation, as well as exhibit greater
sensitivity to their needs in navigating the dying experience (Tolson & Evoy, 2005).
However, health care providers can lack experience to initiate these conversations – in
some cases, because their understanding and training in palliation and comfort
measures is inadequate (Palliative Health Care Professional, interview, 2013, December
4). Many health professionals are predisposed toward life-prolonging measures; as a
result, the information they provide to elderly patients and informal caregivers may not
be suitable or in-line with the patients’ “goals of care.” There is a risk, therefore, that
families and patients may receive advice inappropriate for their specific situation.
Palliative care is a team approach, made up of the elderly patient and the family,
as well as a host of specialists and health care providers. As such, older patients and
informal caregivers may be required to interact with numerous individuals providing care;
this can become overwhelming for families in situations where high levels of care are
necessary. Increased focused on service coordination through a newly created palliative/
end-of-life/hospice coordinator role has been considered to assist elderly patients and
102
families in navigating the complexities of the health care system (Tolson & Evoy, 2005).
It is also important, however, to recognize that “the front line people really are the home
care nurse and the physician” (Palliative Health Care Professional, interview, 2013,
December 3). Because of this, it is crucial for these individuals to have a good
foundation of knowledge with respect to resources and palliative care options available.
However, while elderly patients and their families are heavily reliant on health
professionals for information about palliative options, health care providers are heavily
reliant on palliative professionals to provide consults to older patients. While these
consults are important in deciding likely members of the care team and identifying
appropriate services, it is possible that primary care providers may be unnecessarily
consulting with palliative care units:
We get a lot of consults and people rely on us a lot. Sometimes it’s
frustrating ‘cause you feel like saying, ‘Have you given them anything for
nausea yet?’ ‘Well no, I was waiting for you to come.’ ‘Well, why don’t you
try and maybe with these simple things you won’t need our involvement’
…most physicians should be able to do basic palliative care: basic pain
and nausea management, basic discussing end-of-life care (Palliative
Health Care Professional, interview, 2013, December 3).
This apparent lack of confidence in health care professionals to address palliative issues
can result in a needlessly high number of consults with palliative care teams. This can
detract from the ability of palliative professionals to efficiently provide help to elderly
patients and families.
Lastly, advanced care planning, while emphasized in British Columbia Ministry of
Health policy documents as an area of importance, is not materializing in practice. This
may be due partly to the difficulty in planning for end-of-life given unknown or
unpredictable illness trajectory. However, the importance of advanced care planning is
found neither in the Community Engagement Report on a Regional Palliative/End-ofLife/Hospice Care Services Strategy, nor on Vancouver Coastal Health’s Home and
Community Care web pages; this indicates misalignment between government priorities
and what is happening in practice. For families who have not had discussions about
desired end-of-life treatment for their elderly loved ones, this can result in surprisingly
103
divergent views between patient and family members as to whether a home death is
possible, creating stress and tension between family members:
There’s two ways it can go. One is the patient doesn’t want to go home
and the family wants to take them home but the patient feels safer [in the
palliative care unit]…or the other is the patient wants to go home but the
family doesn’t think they can manage…it gets awful if the family doesn’t
want to do it, if the family’s nervous and the patient wants to be at home
(Palliative Health Care Professional, interview, 2013, December 3).
While a greater focus within the formal health care system to encourage these
discussions is therefore needed, it may also be worthwhile to consider how to build
greater awareness amongst the general public around the importance and gravity of
end-of-life planning.
Effective Pain and Symptom Management: For seniors at end-of-life who
desire a home death, one crucial element of success is proper pain and symptom
management. In discharge planning, it is common for nurses to provide guidance to
informal caregivers in how to administer medications and other kinds of treatment. Adult
Day Services through Vancouver Coastal Health’s Home and Community Care program
can also help with administering medications, albeit a fee-based service which older
patients and/or families would have to pay for.
Managing pain, however, can be complicated. The responsibility to make care
decisions in the home falls to family caregivers and, in cases where this burden
becomes too great or emotionally trying, there is a significant risk that a desired home
death may not occur:
If somebody is at home and being managed and their symptoms are not
enough to bring them into hospital – those are the ones that usually stay
at home and can die at home. If somebody’s at home [with] symptoms
that are severe enough to bring them into hospital? Those are the ones
that are harder to get them home and manage at home (Palliative Health
Care Professional, interview, 2013, December 3).
The responsibility for making the care decisions in the home can either be a nervewracking or manageable experience, depending on the family caregiver’s ability to cope:
“Some people really like that, they like to be in charge, and some people find it very
104
stressful” (Palliative Health Care Professional, interview, 2013, December 3). However,
the ability for informal caregivers to manage pain and symptoms is also dependent on
whether they received enough information from their professional health provider about
how to make decisions and administer treatment in the home.
Finally, while skill-based and emotional challenges are inherent with informal
caregivers attempting to provide care at home, it is possible that not enough is being
done to communicate a realistic expectation of the duties involved. In some cases, a
home death may not be feasible, given the personality of informal caregivers, the
relationship of family members to the elderly individual at end-of-life, and the extent of
responsibilities required in managing pain and symptoms. More straightforward
communication of what is required to achieve a good home death for elderly patients is
needed amongst all involved: patients, families, and professional health care providers.
Provision of Psychosocial, Spiritual and Bereavement Support: With
regards to psychosocial, spiritual and bereavement support, responses to family
members' needs for coping are often reactive versus proactive. For example, while
social workers are highly skilled in helping informal caregivers with their emotional
needs, this generally happens only after elderly patients have been admitted when their
caregivers can no longer manage. Unfortunately, this approach has done little to mitigate
caregiver burnout. When elderly patients who were once at home end up back in
hospital, “it could be sudden decline, worsening of symptoms, but it’s most often
caregiver distress…[self-care] is something that doesn’t happen” (Palliative Health Care
Professional, interview, 2013, December 4).
Palliative volunteers are a valuable source of support for elderly patients and
family members, and currently undergo intensive training in providing bereavement and
follow-up services with informal caregivers; however, the scope of assistance which
volunteers can provide is currently limited. Volunteers with the Vancouver Hospice
Society,
for
example,
“do
not
really help
with
tasks but
simply visit
for
companionship…talking, reading, sitting quietly” (N. Bird, e-mail message to author,
2013, December 9). Vancouver Coastal Health has considered building volunteer
capacity to further support families through increased respite services, emotional
105
support, and in-home care but there is no evidence within the data to suggest significant
advancement in this strategy.
Although palliative care units comprise a host of different specialities, dedicated
counselling services are absent. Home care palliative nurses are available to help
provide counselling, although the extent and availability of these services is subject to
client eligibility requirements. As well, palliative care providers in acute settings provide
some measure of individual counselling, but this is limited to their interaction with
patients “in the moment” rather than on an ongoing basis. In cases where a family
member or elderly patient may desire formal counselling, they would have to pay for this
service out of pocket. Support groups are available through organizations such as the
Alzheimer’s Society and BC Cancer Agency; however, informal caregiving for elderly
patients goes beyond cognitive impairment or cancer, and those caring for seniors
without these conditions remain at a loss for formal counselling. It is also important to
recognize that support groups may be helpful, but are not for everyone: “people who are
hard-wired for stress don’t want that [help or support]…because they’re very
independent and they’re going to do it all themselves and so, they never shared a thing
in their life” (Palliative Health Care Professional, interview, 2013, December 4).
Lastly, none of the data makes significant mention of spiritual services, indicating
that this, too, may be a reactive response to elderly patients’ or informal caregivers’
needs for spiritual support. Limited programming and irregular checks with informal
caregivers mean that elderly patients and their families are largely left on their own to
find means of psychosocial, spiritual and bereavement support.
Support for Informal Caregivers: Support for informal caregivers can be in the
form of respite services, home support for personal care and household needs, as well
as around the clock in-home care when death of an elderly patient is imminent. The
analysis of Vancouver Coastal Health reveals that respite services for informal
caregivers and home support are highly variable. Home support is provided by
Vancouver Coastal Health, based on need; the degree of support provided to families
and elderly patients in the home is determined by a community health nurse and is
subject to the availability of home nursing supports at any given time. Currently, the
maximum allotment for home support is four hours a day or 28 hours per week. Given
106
that many elderly patients require constant care and the competing demands of informal
caregivers, such as work, children or other responsibilities besides caregiving, formal
palliative care workers cite this allowance as inadequate (Palliative Health Care
Professionals, interviews, 2013, December 3 and 19).
For those ineligible to receive home support provided by Vancouver Coastal
Health, nursing assistance through private agencies is available but is costly. Private
nursing can cost up to $10,000 per month for 24-hour, registered nursing care, although
costs vary depending on the qualifications of the care professional – whether that
individual is a care aide, live-in housekeeper, licensed practical nurse, or registered
nurse. However, private nursing agencies do not assign single care workers to individual
families; whoever is assigned to provide care one day may be completely different the
next. This changeability in health care workers can be stressful on elderly patients and
their families, as this inhibits formulation of trust, routine, and expectations around
consistency of care. Private health care workers are also hampered in their ability to
learn the family situation and create a sense of comfort for the person to whom they are
providing care. All of this contributes to what is already an overwhelming situation, and
does little to abate anxiety amongst elderly patients at end-of-life and their families.
Sufficient Financial Support: Financial support to informal caregivers and
seniors at end-of-life is extremely limited. The BC Palliative Care Benefits Program
covers medications and equipment focused on palliation; this is appropriate given that
elderly patients qualify only when their trajectory is six months or less, and when
treatment is aimed at comfort versus prolongation of life. However, this suggests that
there is agreement on goals of care amongst all involved: the elderly patient, family
members, and the palliative care team. This can be challenging when disparate views
exist around desired end-of-life treatment. In order to be eligible for this program, elderly
patients must also sign a Do Not Resuscitate (DNR) order; for personal philosophical,
cultural or religious reasons, some patients and families may not want to agree to this,
as many believe interventions should be taken right up until death. However, without the
DNR form and agreement for strictly palliative measures, older patients at end-of-life are
excluded from receiving any benefits under this program.
107
The Employment Insurance (EI) Compassionate Care Benefit (CCB) provides up
to six weeks of EI benefits to a family caregiver. However, it is restrictive in the sense
that the individual must be employed and therefore eligible to receive employment
insurance. In addition, the family caregiver applying for CCB must show that their regular
weekly earnings from work have significantly decreased before they can receive any
financial assistance. While the program does allow for more than one family caregiver
per patient to apply for benefits, the six-week period of coverage is an absolute and
cannot be extended. This can be challenging, given that end-of-life trajectory is largely a
well-informed guess; if the elderly individual at end-of-life requires care beyond the sixweek period, informal caregivers will not be eligible for any more coverage under this
program.
Lastly, the data analysis showed that equipment is available to elderly patients
for free or rent from the Canadian Red Cross Society; this can help informal caregivers
manage end-of-life care at home without causing undue financial strain. However,
availability is subject to restrictions – for example, patients able to get out of bed on their
own do not qualify for hospital beds, even though having a hospital bed in the home can
make it easier for family members to provide care. This can be limiting for families who
feel they could manage more easily with certain types of equipment, but who cannot
access those pieces due to eligibility constraints.
108
Appendix I. Case Study Analysis Word Tables for
Case #2: Providence Health Care
Criteria
Description
RATING SUMMARY
1. Document
on Palliative
Care at St.
Paul’s
Hospital
Preparation and
Advance Care
Planning
care providers begin the
process of preparing the
patient and family for the end
of life and the decisions they
will need to make along the
way
providing families and
individuals with information
referring to available services
deciding on likely members of
care team
identifying roles of patient and
family members
determining means of
communication and
coordination of services
provide info and resources to
support ACP (understanding
of options, providing
instructions for treatment,
choices for end-of-life care)
Pain and Symptom
Management
providing pain and symptom
management to patient
primary care providers
consult with specialist
clinicians
palliative specialist
involvement when necessary
Psychosocial,
Spiritual and
Bereavement
Support
provision of these services by
community groups
clarity of roles
regular communication
109
2. Website
text on
End-ofLife Care
3. Interviews
with palliative
care
professionals
Criteria
Description
RATING SUMMARY
1. Document
on Palliative
Care at St.
Paul’s
Hospital
Support for
Informal
Caregivers
Financial Support
sensitivity and
responsiveness to patient and
family members' needs for
coping
access to (flexibility of) respite
services
access to home support for
personal care and household
needs
around the clock care in neardeath stage
health team assists with BC
Palliative Care Benefits
Program enrolment
access to program is
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
110
2. Website
text on
End-ofLife Care
3. Interviews
with palliative
care
professionals
Criteria
Description
1. Document on Palliative Care at St. Paul’s
Hospital
Rating
Preparation and
Advance Care
Planning
care providers begin the
process of preparing the
patient and family for the
end of life and the decisions
they will need to make along
the way
providing families and
individuals with information
Explanation
End of life care not specifically mentioned
Explains what is palliative care, the goals of
palliative care (e.g. symptom management)
and where it can be provided; provides a
checklist of what information and forms
patients/families should take home with
them
Describes that homebound palliative
patients will be connected with community
services, home care nursing, community
palliative care services, family doctor;
describes other informational pamphlets
that are available; non-staff practitioners
(forms and instructions available)
Describes options for leaving hospital (e.g.
home, hospice, residential care facility) and
discussion with doctors, nurses, social
worker
Brief description of family meeting,
identifying goals of care, plans for discharge
from hospital; specifically requests for one
family contact to be designated
Identifies family meeting, care team of
doctors, nurses, social worker and other
services which patient should be connected
to if going home; encourages patients to
ask questions about their care and for
clarification; advises that interpreters are
available for those who speak another
language or use sign language
Mentions ‘Care Plan’ as a written plan of the
patient’s needs and wishes, but only
generally and not in any detail
referring to available
services
deciding on likely members
of care team
identifying roles of patient
and family members
determining means of
communication and
coordination of services
provide info and resources
to support ACP
(understanding of options,
providing instructions for
treatment, choices for endof-life care)
111
Criteria
Description
1. Document on Palliative Care at St. Paul’s
Hospital
Rating
Pain and
Symptom
Management
providing pain and symptom
management to patient
Identifies goal to ‘relieve your pain and
other uncomfortable symptoms’ but does
not go into any details
Describes that homebound palliative
patients will be connected with community
services, home care nursing, community
palliative care services, family doctor;
describes other informational pamphlets
that are available; non-staff practitioners
(forms and instructions available)
As above
primary care providers
consult with specialist
clinicians
palliative specialist
involvement when
necessary
Psychosocial,
Spiritual and
Bereavement
Support
provision of these services
by community groups
clarity of roles
Mentions referrals to community services, in
general
Describes access to pastoral (spiritual) care
worker while in Palliative Care Unit (PCU)
Not mentioned
Identifies goal to ‘attend to the tneeds of
your body, mind and spirit’ and ‘give support
to both you and your family’
regular communication
sensitivity and
responsiveness to patient
and family members' needs
for coping
Support for
Informal
Caregivers
Explanation
access to (flexibility of)
respite services
access to home support for
personal care and
household needs
Not mentioned
Describes referral to Home Care Services
and help with going home: home care nurse
visit, occupational therapist to assess
equipment, social worker to discuss
financial issues, pharmacists to review
medication, respiratory therapists for
oxygen needs
Not mentioned
around the clock care in
near-death stage
112
Criteria
Description
1. Document on Palliative Care at St. Paul’s
Hospital
Rating
Financial
Support
health team assists with BC
Palliative Care Benefits
Program enrolment
Explanation
Describes the program and encourages
patients to complete the form before leaving
hospital, as well as DNR form (but calls it
the ‘Provincial No Cardiopulmonary
Resuscitation’ form)
Indicates what program covers, including
equipment, most medications and extra
home support worker hours but does not
specify eligibility other than trajectory of six
months and DNR (but mentions DNR
separately from program form)
access to program is
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
113
Criteria
Description
2. Website text on End-of-Life Care
Rating
Preparation and
Advance Care
Planning
care providers begin the
process of preparing the
patient and family for the
end of life and the
decisions they will need to
make along the way
providing families and
individuals with information
referring to available
services
deciding on likely
members of care team
identifying roles of patient
and family members
determining means of
communication and
coordination of services
provide info and resources
to support ACP
(understanding of options,
providing instructions for
treatment, choices for endof-life care)
Pain and
Symptom
Management
Psychosocial,
Spiritual and
Bereavement
Support
Explanation
Palliative Care Outreach Team (POCT)
avalable to assist ‘in situations with difficult
to manage symptoms, tough decisions and
deciding about best treatments’and ‘support
each person and family in distress about the
illness’; describes goals to identify goals of
care
Describes what palliative care is and goals
of palliative care
Describes Palliative Care Outreach Team
(POCT) involvement
Not mentioned
Not mentioned
Not mentioned
Encourages patients to keep track of their
own symptoms over time and discuss
concerns with family; referes to Canadian
Virtual Hospice for more info on ACP; goals
include having discussions on what is
important to person and family, and future
care planning
Describes this as one goal of palliative care
providing pain and
symptom management to
patient
primary care providers
consult with specialist
clinicians
palliative specialist
involvement when
necessary
Describes team approach to chronic illness
and treatment
Encourages patients to discuss palliative
care with their health care providers;
willingness to involve the Palliative Care
Outreach Team (POCT) to assist
provision of these services
by community groups
clarity of roles
regular communication
Not mentioned
Not mentioned
Not mentioned
114
Criteria
Description
2. Website text on End-of-Life Care
Rating
sensitivity and
responsiveness to patient
and family members'
needs for coping
Support for
Informal
Caregivers
Financial Support
access to (flexibility of)
respite services
access to home support
for personal care and
household needs
around the clock care in
near-death stage
health team assists with
BC Palliative Care Benefits
Program enrolment
access to program is
equitable (availability of
medications)
Explanation
Goals include spiritual and psychological
care of the whole person and fmaily;
palliative care Powerpoint describes
approach to support the family and survivors
after death; however, Powerpoint written
more for medical audience versus general
public (summarizes palliative studies and
evidence versus how/what to expect as a
patient or family member)
Not mentioned
Not mentioned
Not mentioned
Not mentioned
Not mentioned
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
115
Criteria
Description
Preparation and
Advance Care
Planning
care providers begin the
process of preparing the
patient and family for the
end of life and the
decisions they will need to
make along the way
providing families and
individuals with information
referring to available
services
3. Interviews with palliative care professionals
working within Providence Health Care
Rating
As above
Assessments are conducted by palliative
consult nurses to determine what services
are needed; nurses help to make
connections with health service providers
As above
deciding on likely
members of care team
identifying roles of patient
and family members
determining means of
communication and
coordination of services
provide info and resources
to support ACP
(understanding of options,
providing instructions for
treatment, choices for endof-life care)
Pain and
Symptom
Management
Explanation
Consult teams discuss what is needed and
what resources are/are not available if going
home but even more needed to ensure
families have realistic expectations (GPs,
acute care, palliative units, etc.)
Family meetings could occur more often to
help identify goals of care
Acute palliative care connects
patients/families with proper services
This happens but goals of care can change
and may need to be re-evaluated, which can
be complex/complicated
providing pain and
symptom management to
patient
Consults may result in suggestions for
symptom management going to physicians;
may be inadequate if health care provider
inexperienced or does not properly explain
to patient/family; educating family members
on pain and symptom management is
minimal
Consults may result in connecting
patients/families with medical units,
transitional services e.g. connecting to home
care and community nursing
Non-palliative care providers may lack
expertise, experience in when to involve
palliative care; are reliant on palliative
specialist expertise
primary care providers
consult with specialist
clinicians
palliative specialist
involvement when
necessary
116
Criteria
Description
Psychosocial,
Spiritual and
Bereavement
Support
provision of these services
by community groups
3. Interviews with palliative care professionals
working within Providence Health Care
Rating
Support for
Informal
Caregivers
Financial Support
clarity of roles
regular communication
sensitivity and
responsiveness to patient
and family members'
needs for coping
access to (flexibility of)
respite services
access to home support
for personal care and
household needs
around the clock care in
near-death stage
health team assists with
BC Palliative Care Benefits
Program enrolment
access to program is
equitable (availability of
medications)
Legend
Fully meets criterion
Partially meets criterion
Does not meet criterion
117
Explanation
Home Hospice through VCH can be called in
to assist with counselling, paperwork,
financial needs and includes doctors,
nurses, social workers, pastoral care
workers (very limited staff/resource) and
social worker doing assessment needs to
clear service with family and patient; hospice
volunteers also avaialble for peer
counselling for end of life; bereavement
support available; lack of counselling
services
Not mentioned
Not mentioned
Health care workers responsible for teasing
out how well family is coping but often does
not happen (high caseloads, predisposition
to get patients out of wards quickly)
Caregivers encouraged to use respite (can
be reactive versus proactive)
Lack of supports in community; things often
do not go well at support due to not enough
or no supports; health care providers need to
be able to elicit what is going well/not well at
home from family members (learned skill);
community nurses not always palliative
nurses
24-hour nursing at end-of-life not always
available
Willingness to discuss/help complete BC
Palliative and CCB forms (often social
worker to actually help fill out forms)
Patient prognosis is less than six months;
may outlive those six months and either
come off or stay on benefits (reasons for this
unclear); four hours per day/28 hours per
week home support allocation based on
chronic needs and availability of resources
Appendix J.
Detailed Case Study Analysis of Case #2: Providence Health
Care
Adequate Preparation and Advance Care Planning: Through patient consults
conducted by the palliative care team within Providence Health Care, health care
professionals are providing families and elderly individuals with information to help them
prepare for end-of-life and whether a home death is possible for the patient. These
assessments also serve to connect elderly patients with care providers and different
resources, depending on what is needed. For example, one palliative care provider
explains:
In my consult I say things like, ‘Get connected with physiotherapy and
occupational therapy before they go home to assess what their needs
are…home care nursing, home care supports.’ Are they appropriate for
BC Palliative Benefits? Do they need home hospice volunteers? I try to
get this set up before they ever go home (Palliative Health Care
Professional, interview, 2013, December 16).
In addition, the Palliative Care at St. Paul’s Hospital document provides a good
overview of the PCU, what each specialist is responsible for, and the types of
information patients and families should take with them when leaving PCU for home,
hospice or residential care. Through information available in this document and online,
patients are also encouraged to ask questions in their interactions with health
professionals about their care to ensure clarity around what happens after being
discharged from the hospital. Patients can read information about how to monitor their
symptoms and involve others in discussion around palliative care planning: “If you have
concerns about the future let your chronic disease team know that you wish to discuss
this. It is also good to discuss these concerns with your family and those you trust to
speak for you if you should become too sick to speak for yourself” (PHC, 2013a).
In practice, however, this level of detail and information can be inconsistent both
inside and outside of the PCU. Depending with which care team patients and families
may be interacting, they may not be receiving the best or most accurate information; this
can be the result of dealing with health care providers inexperienced in palliative care:
118
I think it’s the nature of where we work in acute care with the rapid
turnover of residents and nurses…people just change over so
fast….there are some people who definitely know what to do, like a lot of
the social workers…but the teams, as a general rule…they know the
paperwork, but they just want somebody from Palliative Care to come in.
It’s almost like they need us to bless it (Palliative Health Care
Professional, interview, 2013, December 16).
While palliative specialists may run the risk of being over-consulted, the rigour in patient
decisions made outside of PCU may be lacking without this palliative consult. This can
result in elderly patients or families receiving inadequate information about the
experience of home death: “Sometimes we actually do go and stop other teams from
sending people home because they think they’re ready to go and we think, ‘What?
They’re just going to bounce back here because they don’t have any supports’”
(Palliative Health Care Professional, interview, 2013, December 16).
Compounding this experience is a tendency for family meetings not taking place
as often they should – typically only when complex family dynamics are involved:
“Sometimes we [the palliative care team] get called in to help clarify goals of care and it’s
like, ‘Well, have you sat down? Have you actually had a family meeting?’ And that often
has not ever happened” (Palliative Health Care Professional, interview, 2013, December
16). More regular family meetings can help to define goals of care, clarifying for elderly
patients, informal caregivers, and all members of the palliative care team what
treatments are possible moving forward:
I think if you had family meetings for everybody – holy smokes! What an
interesting difference that would make. If you had a family meeting within
the first say, 72 hours that you’re here, or at least the first week, you
would figure out what people’s goals are, how they’re struggling, what the
future might look like, what’s important to the patient and family…those
issues which are so central to making a plan for the future (Palliative
Health Care Professional, interview, 2013, December 16).
With respect to end-of-life planning, there was very little to no direction on
advance care directives found in the written data. However, palliative health care experts
within Providence Health Care stressed the importance for families and health providers
to have these discussions, likening the planning process to one as important as that of
expectant mothers:
119
I like to try and introduce to people that our society today encourages and
supports adults once they find out…that they’re pregnant. They
encourage…healthy maternal health, healthy mom-baby health…in
society we frown on those who don’t prepare for…this new life, by the
right choices [and other preparations]…it’s quite the reverse when we
know that we have somebody who is coming to the end of their life…why
don’t we prepare for death the same way? In my perfect world, we
embrace both [palliative care and maternity care] with the same energy
(Palliative Health Care Professional, interview, 2013, December 17).
Death doesn’t happen quickly. We live longer. We live with a lot of comorbidities in the last few years of life. A lot of people don’t make choices
for end-of-life care. They don’t talk about it. There’s not very much ease
within families, of all sorts, to talk about how you envision yourself. Unlike
birthing, where people plan, and have midwives, and get lots of
information…when it comes to dying we don’t do that (Palliative Health
Care Professional, interview, 2014, January 28).
There was acknowledgement, however, that planning for end-of-life can be a difficult
process, beyond the discussion of care goals. A more realistic view is needed around
whether dying at home is possible, given family circumstances and the elderly patient’s
conditions: “Lots of different factors influence the experience of death at home. I think we
need to divorce ourselves from a romanticized version of death at home. Death at home
is good when it can be done, not good when it can’t be done” (Palliative Health Care
Professional, interview, 2014, January 28).
Overall, while planning for end-of-life is an important step, it is not consistently
being done. This is due to hesitancy by families to discuss death and dying, but also
because professional health care providers are not acting in a coordinated enough
manner to ensure these conversations take place.
Effective Pain and Symptom Management: Reducing pain, controlling
symptoms and helping to maximize the quality of elderly patients’ lives are all goals of
Providence Health Care’s end-of-life and palliative care delivery (PHC, 2013a). While
PCU professionals may suggest pain and symptom treatment for elderly patients being
taken care of by other hospital units, there is a risk of treatments being unavailable
where inexperienced health care providers are involved: “So many times the symptom
management isn’t there because [the health care provider outside of PCU] is
120
afraid…they don’t even order them sometimes, what is appropriate” (Palliative Health
Care Professional, interview, 2013, December 16).
As well, pain and symptom management is one of the most difficult things for
family members to do at home for an elderly loved one:
I think we have that expectation that we all can do the same thing…I, as
your caregiver, should be able to give it [medication] to you. And certainly
there are a group of people that will say, ‘I can do that. Just teach me how
to do it and I can do that.’ And there are other people that will be terrified.
We have nurses that don’t want to give the opioids for comfort because
they’re afraid they’re going to kill them [patients]. So how do we have the
expectation that a family member should be okay with that (Palliative
Health Care Professional, interview, 2013, December 16)?
Informal caregivers receive only minimal instruction on how to administer medications for
pain, and limited education around what to do if their elderly loved one experiences
shortness of breath or other symptoms at home. This can exacerbate stress amongst
family caregivers and increase the risk of a return to hospital for greater levels of
professional palliative assistance.
Provision
of
Psychosocial,
Spiritual
and
Bereavement
Support:
Psychosocial, spiritual and bereavement supports for informal caregivers and elderly
patients at end-of-life is critically lacking within Providence Health Care. Information
available through the palliative care document and website highlights these services
very minimally, if at all. It can be argued that all health care workers – whether family
physicians, or those from palliative care, emergency, intensive care, or other medical
units in hospital – are responsible for teasing out how well informal caregivers are
coping, yet this often does not happen due to high caseloads, and a predisposition for
many doctors to quickly discharge patients out of their wards, given limited beds and
high numbers of patients.
Informal caregivers and elderly patients at end-of-life do receive emotional
support in hospital, but in reactive versus proactive ways. Patients and families may
interact with social workers who are very experienced and sensitive to the needs of
those with whom they encounter; however, meeting with a social worker typically only
happens in cases of complex family dynamics or where discharge planning is
121
complicated. Further, psychosocial support and counselling is generally unavailable after
elderly patients and informal caregivers leave the hospital, despite the recognition that
greater levels of emotional support are needed throughout the elderly patient’s lifelimiting illness:
There’s this idea of anticipatory grief. Loss is one of the most difficult
things we deal with as human beings…and the loss doesn’t just happen
at the death. This is, my mother can’t eat anymore, my mother can’t walk
anymore, she can’t talk to me anymore. It’s all along the way. All of those
things are quite psychologically burdensome (Palliative Health Care
Professional, interview, 2013, December 19).
Greater availability of professional counselling can therefore be helpful to those who may
need this type of support.
Support for Informal Caregivers: Access to respite services, home support and
around the clock care in near-death stages are all lacking. Again, determining whether
informal caregivers are coping well or need more help is ultimately the responsibility of
professional health care providers. However, inexperience in or lack of sensitivity around
palliative treatment can lead to cases where a family member needs more help, but has
not been identified as needing help by a health care professional:
I think if you come across as a really confident caregiver no one’s going
to [question it]…I think part of the problem in acute care is get-em-in, getem-out. Certainly, I’m not knocking the teams, but I do sometimes wonder
how come that team that I work so closely with, and I know you’re all
caring, compassionate people, but how did you miss this?...They let it go
(Palliative Health Care Professional, interview, 2013, December 16).
Health care providers need to be able to elicit from family members whether things are
not going well at home, but this is a learned skill that many do not currently have.
It is clear from the data, particularly the interviews with palliative care
professionals within Providence Health Care, that more home care resources are
needed. When elderly patients end up back in hospital it is often as a result of their,
and/or their informal caregivers’, inability to cope at home: “Sometimes that’s just their
disease progressing, but sometimes it’s because it just didn’t go well at home. They
didn’t have enough supports or they had no supports” (Palliative Health Care
122
Professional, interview, 2013, December 16). Part of this problem is the lack of
awareness that supports do exist. This highlights a need for primary health care
providers to have a familiarity of palliative resources that can be provided for elderly care
and end-of-life at home:
It takes more money…more home care nurses to be able to give more
support and…to be able to get equipment into the homes to support these
patients and families…I just see all these families that come in and
they’re absolutely exhausted. Some of them we try to get supports for but
we can’t. Some of them aren’t on supports; they don’t even know they
exist (Palliative Health Care Professional, interview, 2013, December 16).
[Family members] don’t know what’s out there. They don’t know how to
ask for it. They don't maybe necessarily know even that they can ask their
GP [general practitioner] for it…somebody can pick up the phone in the
community and say, ‘Can I have a home care nurse to see my husband?’
But who knows that? (Palliative Health Care Professional, interview,
2013, December 16).
A prime example of this is the inconsistency of availability for 24-hour nursing when
death at home is imminent. This lack of support, particularly at end-of-life, detracts from
informal caregivers’ ability to care for an elderly loved one wishing to die at home.
Sufficient Financial Support: With respect to the BC Palliative Care Benefits
Program and the Employment Insurance Compassionate Care Benefit (CCB), palliative
care professionals working within Providence Health Care are generally aware of and
will encourage patients to apply for these programs before leaving the hospital.
However, these programs are described only briefly in the PCU document and not at all
on the website for end-of-life/palliative care. While health care professionals may be
attuned and willing to help patients complete these forms, eligibility is still confined to
those strictly at end-of-life, which may inhibit those who need certain types of care to
remain at home. One palliative care professional described a case of a patient who
needed a high level of supports at home but was ineligible to receive benefits:
I can’t get her palliative supports out in the community…equipment and
even just maybe the frequency of nursing and kind of supports. ‘Cause
she needs BC Palliative Benefits, but she doesn’t meet the criteria. And
so the family struggles and cares for these people, you know? We see so
many patients here like that. I mean, it’s astounding. It’s amazing how
many people are living out in the community very poorly and don’t have
123
supports….it would be so much better if they did (Palliative Health Care
Professional, interview, 2013, December 16).
124
Appendix K.
Descriptions of Informal Caregiver Interview Participants
Caregiver 1 is a female widower who provided end-of-life care to her elderly
husband when she was 62 years old. Because they had a revenue property and she
was on the verge of retirement, she chose to give up work completely to become his athome caregiver.
Caregiver 2 is a middle-aged woman who is married with children. She and her
brother made the care decisions for their two parents who both fell ill at the same time, in
their late 80s – he with congestive heart failure and type 2 diabetes and she with early
onset Alzheimer’s.
Caregiver 3 is also a middle-aged woman with a husband and children. Her
elderly mother had a cognitive impairment and needed increasing amounts of care over
time. Living in the same home in a separate apartment on the ground floor, the informal
caregiver and her husband chose to continue work and hired full-time, live-in support.
Caregiver 4 is a male widower who chose to give up work to care for his wife
after she was diagnosed with cancer. She received, in his opinion, severely inadequate
cancer treatment. She experienced a home death, surrounded by her husband and
friends.
125
Appendix L.
Detailed Policy Options
Increase the availability and extent of publicly funded formal home support
Both professional palliative health workers and informal caregivers disclosed that
the current levels of home care provided by the local health area are insufficient and not
comprehensive. The allowance of home support each family receives is subject to an
assessment of care needs; however, the current maximum allotment of four hours a day
or 28 hours per week can be unsatisfactory for many elderly patients needing high levels
of care. An increased allowance for in-home personal care and to help with household
needs can help to ensure informal caregivers can better manage with elderly, end-of-life
patients in the home; this can serve to mitigate safety issues with regards to pain and
symptom management, minimize caregiver burden, particularly in later stages of patient
illness, and create greater opportunities for proactive caregiver respite. As well, it is
worthwhile to consider expanding the extent of professional home care to areas such as
emergency or crisis response, or bespoke treatment based on specific illnesses and
required treatment.
However, increasing the availability of publicly funded home support, as well as
expanding home support services, is expected to be costly; high hours of publicly funded
home support, a greater range of in-home treatment options, and more visits in the
home by family physicians will all contribute to these increased costs. Further, greater
levels of administration are required in assigning home care workers to families and
older patients. As well, mitigation measures would need to be determined to ensure
home care supports are not abused or overused. For example, 28 hours maximum per
week may be inadequate for some patients and families, but mechanisms will need to be
considered to ensure that individuals are receiving only the levels of home care they
need.
Provide a single point of contact for elderly end-of-life patients and their families
Because a palliative care team can comprise many medical professionals,
informal caregivers are often left to connect with various specialists and departments,
and coordinate appointments for their elderly loved one based on treatment plans and
126
goals of care. Often, informal caregivers are also responsible for acting as the advocate
for their elderly family members: knowing the medications, negotiating home care, and
speaking up for the patient’s desired end-of-life treatment. A single point of contact for
elderly, end-of-life patients would assist families in this advocacy role by helping them
navigate the health care system, complete applications for social programs such as the
BC Palliative Care Benefits and federal Compassionate Care Benefit programs, and
obtain necessary equipment for the home.
In order to recommend appropriate supports for which the elderly patient and
family may be eligible, this single point of contact would need to be well-informed of
palliative programs available from the local health area and supports available in the
community, and would also require expertise and proficiency in negotiating palliative
care and resources. As well, this individual would be required to have excellent social
and interpersonal skills, as he or she would need to be sensitive to older patients’ and
families’ needs, responding to the family’s situation based on a thorough and personal
understanding of their needs. For these reasons, continuing professional development
for these health professionals is vital in ensuring ongoing standards of care (Brown et
al., 2002). From the research findings, social workers emerged as a key support system,
highly trained in these areas; however, existing staff are already challenged in managing
high caseloads. Therefore, additional hiring or creation of a completely new role would
need to be considered in putting this option into practice.
Increase frequency and reach of family meetings
In the research findings, informal caregivers and elderly palliative patients cited
insensitivity and unresponsiveness of professional care providers to emotional needs as
a challenge. Palliative health care experts also revealed that health providers, in
particular, some family physicians, as well as those from other medical units in hospital,
can be over reliant on their expertise. Additionally, government policy has been focused
on the information needs of health care professionals; perhaps, this was in recognition of
a greater need for training and experience in palliation for professional health providers.
To build capacity and understanding around palliative treatment and services,
family meetings with the broader palliative care team are proposed – not just in cases of
complex family dynamics or discharge, but for all elderly patients arriving in hospital
127
within 72 hours of their arrival, or elderly patients and/or families who have requested
more information about palliative care. As suggested by some palliative care
professionals, scheduling family meetings in this manner would serve to:
•
Clarify goals of care and ensure entire team has a singular understanding of
elderly patients’ end-of-life wishes;
•
Determine how well the family is coping, if at all;
•
Streamline care plans by mitigating miscommunication about what treatments
are and are not possible; and
•
Build capacity and understanding of palliative care and palliation measures
across different hospital teams and amongst various health care
professionals.
In so doing, this can also help to inform next steps in treatment and clarify what home
services are needed by the family upon discharge.
However, because these meetings are meant to involve elderly patients, family
members, and all relevant health care providers, coordinating these schedules is
expected to be extremely challenging, given busy schedules of many professional health
care providers. It may be necessary, therefore, to create a specific scheduling system or
consider conducting meetings via teleconference or internet, versus attempting to meet
only in person.
Create local, community-based services and support networks
Many informal caregivers indicated a need for more help with tasks like
transporting elderly family members to and from appointments, making care decisions,
and accessing counselling, respite and emotional support. Local, community-based
support and care networks for older patients and their families can comprise a number of
resources: a shuttle service for appointments, companionship, assisting in the home to
allow family caregivers to take a break from their duties, even counselling. Expanded
support networks in the community could emulate current best practices of hospice
volunteers, or existing organizations known for providing first-class support to elderly
patients at end-of-life and their families – but the primary attribute is that the creation of
resources and services would be left to those within the community based on their
specific needs.
128
In order to implement this policy, interprofessional meetings will need to be
organized to determine certain details and logistics. For example: what agencies will be
responsible? What services would they provide? What would be the extent of volunteer
duties? What training needs to be provided? As well, coordination of volunteers would
need to be done by a central agency, in which case, involvement of community-based
organizations is required, but their resources may already be restrained. Thus, what
agencies might be willing to accept this responsibility?
129
Was this manual useful for you? yes no
Thank you for your participation!

* Your assessment is very important for improving the work of artificial intelligence, which forms the content of this project

Download PDF

advertisement