Thinking about end-of-life issues is difficult. We don’t like to think about the death of our loved ones, let alone ourselves. Yet at some point we all need to start planning for the tough decisions that inevitably come as the body ages and becomes more fragile and dependent.
We know this. Statistics tell us that a majority of us are highly concerned about the type of end-of life care we or the ones we love will receive; and that most of us desire to be cared for in a manner that minimizes our suffering while remaining sensitive to our unique psycho-social, cultural, and religious needs. But the current reality is that when it comes to end-of-life care, most of us will not get what we hope for. A significant reason for this disconnect is that the end-of-life care system in Canada is fragmented, inaccessible to many, and sporadically supported across the country. In short, end-of-life care in Canada needs renewal.
But we have known this for a while. A 1995 Senate Committee report, “Of Life and Death,” high lighted the importance of making palliative end-of-life care “a top priority in the restructuring of the health care system.”1 Since then, numerous reports and initiatives regarding how we provide such care in Canada have been produced. In part, the motivation for these efforts is simply a natural outgrowth of the value we place upon the dignity of human life. Yet another subtext for this debate has been a growing realization that as the baby-boom generation ages, our end-of-life care systems as presently organized will be stretched beyond capacity. In addition, current debates on the divisive issues of assisted suicide and euthanasia are bringing issues about how we best care for the terminally ill into much sharper focus.
To be sure, there are disagreements about the best allocation of resources, the proper arrangement of our priorities, and more contentious questions over legality and individual autonomy. But there is also a remarkable amount of agreement: most Canadians – across party lines – want to see improvements in end-of-life care in order that those we care about might die in familiar settings connected to a natural community of caregivers and loved ones.
However, this significant consensus has not translated into the front-line change one might expect. A decade after the first studies were articulated, new reports have been issued with recommendations that, save for an updating of statistics and minor modifications, reflect an unchanged narrative: the way we deliver end-of-life care in Canada does not match the desire of most Canadians.
In a sense this report is no different. Most of our recommendations and analysis have their origins in previous reports. Most specifically, this report builds on the 2011 report, “Not to be Forgotten: Care of Vulnerable Canadians,” produced by an all-party committee and signed by 58 MPs.
“Not to be Forgotten” proposed a shift from our current reliance upon acute care facilities for end-of life treatment and highlighted the range of social institutions—from home care, to hospices, to long term care facilities—that provide better quality end-of-life care while being more cost-effective.
What we seek to do in this document, rather than reinventing the wheel, is to re-evaluate the various recommendations drawn from these sources using three lenses:
1. Natural Death: We need to build a social system that supports the desire of Canadians for a natural death, which we understand to mean dying of natural causes in our natural environment surrounded by our natural caregivers.
2. Social Architecture: We need to think of this system in terms of more than health, recognizing that not only the patient but also the natural caregivers need to be the focus of support, and thus the full range of social institutions best equipped for natural deaths need to be made more available to more Canadians.
3. Continuum of Care: We need to think of the delivery of care not as a series of alternatives to be chosen between, but rather as a continuum of care in which there is a seamless continuity of end-of-life care supports and settings as our fellow Canadians and their loved ones travel the journey through to the end of their natural lives.
These three lenses are helpful tools to re-frame and broaden the discussion. Much of the discussion to date has been focused on changing the systems that govern our health: reflecting on how the different levels of government ought to do things differently; communicate with each other; synergize their efforts through “national strategies”; and extend the capacity for care to be delivered and sup ported. All of this remains productive and necessary.
However, if the full potential of our efforts is to be achieved, what is needed is a more innovative ownership of the problem and solutions. A broader recognition needs to be cultivated that preparation for the end of life is part of a well-lived life. And although government has a role, this is as much about creating space for individual Canadians, their natural caregivers, and the many civil society institutions that are well equipped to help.
Constructive cross-partisan discourse—too rarely achieved and celebrated in Canadian politics to day—is what “Not to be Forgotten” achieved in its concern for improving end-of-life care in Canada. Our aim is to build on the good work done by the 2011 Parliamentary Committee and the hundreds of good organizations who are working, in various dimensions, in this difficult and complex field. We want to provide a platform that will contribute to a broader awareness of these issues and increase the momentum to bring about the necessary changes. Our hope is that in some small way, this report will contribute to the common goal of bringing the best care to some of the most vulnerable among us, and continue to make Canada a country we are proud to live in and also unafraid to die in.
Author: Ray Pennings//Executive Vice President at Cardus
Ray Pennings is a co-founder of Cardus and currently serves as its Executive Vice President, working out of the Calgary office. He has long experience in Canadian industrial relations, as well as public policy, political activism, and political affairs.
We would like to acknowledge the dozen leaders who are playing a leading role in providing or researching end-of-life care, who generously gave of their time and expertise to shape this report and its recommendations, with the promise of anonymity. We would like to acknowledge Doug Sikkema, who oversaw the literature and landscape review embedded in this report, together with the various researchers who assisted him, including Cardus*U participants Matthew Bokma and Caleb Heerema. We would also like to recognize Christian Vandergeest, who assisted in the preparation of this report. Finally, we express our gratitude to Kira Lodder for the graphics and typesetting of this report.
The cardo was an ancient north-south road that connected the people of Roman cities to their major public spaces. Cardus’s wide-angle periodicals, policies, and punditry come together for a renewed vision of North American social architecture, up and down the cardo—the Main street.
Canadian Values + Public Opinion
Data from two separate polls reveal that the narrative traced in the “Not to be Forgotten” report of 2011 remains largely unchanged: when it comes to end-of-life care there is still a significant disconnect between the hopes of Canadians and front-line realities. What’s more, most Canadians have come to expect this disconnect, signalling a certain distrust to the current end-of-life care systems in place throughout Canada.
A 2013 Harris Decima Survey2 indicated that among the majority of Canadians who have thought about their own death, the majority (75%) would prefer to die at home, while only 52% expect this to actually happen. The reality, shown by a Canadian Institute for Health Information (CIHI) report, is that almost 70% of Canadians actually die in hospital.3
This disconnect between desires and reality is corroborated by the findings from a Nanos Poll4 conducted in February of 2015, which provides an up-to-date snapshot of public opinion regarding end-of-life care in Canada. Again, the clear message is that although Canadians trust their health care providers, 73% are concerned or somewhat concerned that they will not receive the comfort and support they would hope to receive if they or a loved one was facing a life-threatening illness or nearing death. This disconnect is not only a factor of quality of care, but type of care. A majority of Canadians hope that end-of-life care will respect their personal faith and family’s culture, yet between 40-45% are unsure as to how faith groups, community groups, and cultural groups—all integral parts of a flourishing social architecture—can contribute to the full continuum of end-of-life care.
There are a variety of reasons for the ongoing disconnect between what we hope for and what we will likely receive in terms of end-of-life care, but this report demonstrates that the key drivers include a lack of advance planning; a default use of acute care facilities for delivering required treatments (with inadequate investment in alternative models of care delivery); and a general lack of awareness of available pain management treatments that can be delivered in a way that mitigates most of the physical pain associated with the physical end-of-life process.
The Frontline Reality
Our Changing Experience of Death
Prior to the 1950s, death was a social reality that was more frequently located within the broader community at large.5 However, since the end of World War II, social disintegration, increased mobility, and the medicalization of death have all worked to relocate death and dying from its natural environment within family and community-based institutions to larger, more impersonal acute care facilities. By the mid-century, over half of all deaths took place in hospitals, contrasted to only 30% in the 1930s. This number peaked in 1994 with 77.3% of all Canadian deaths occurring within a hospital setting.6 Yet the point to which we want to draw attention here is not so much about where we die than it is about how we experience death.
The increased medicalization of death has prompted many Canadians to no longer consider death and dying as natural experiences that take place within a familiar social setting under the observation and care of the natural family and local community.7 As noted in “Not to be Forgotten,” the “medical care model,” which has largely supplanted the “community care model,” emphasizes the central role of professional care teams, and the authoritative role of the doctor. In this model, “doctors, nurses, social workers, psychologists, spiritual counselors, and a range of accredited specialists, become the central actors in the patient’s care.”8 This move has required the move to providing end-of-life care at hospitals, which has in turn created a backlash against experiencing life in such a foreign environment. A better approach, we suggest, is not about avoiding the hospital at all costs, but moving toward a more patient-centered approach that would, in turn, have implications for how one might better experience natural death in a hospital setting.
An important consideration that can be easily overlooked in the midst of healthcare statistics is that almost every metric of success in our healthcare system involves the preservation of life. While this is the obvious focus for a healthcare system, it lacks the nuance required for measuring end-of-life care, and may point to an overemphasis on the extension of life. Such an orientation can easily lead to an “over-medicalization” of the dying process. Geoffrey Poitras of Simon Fraser University explains how “medicalization” arose in the 1950s as a way to explain social deviance as a medical problem which could be treated.9 Since then other social realities—like death—have also been subjected to this “medicalization” process. David Field, in the European Journal of Cancer Care, goes on to argue that since this time, “More areas of life are being brought under the scrutiny and control of the medical profession. Thus, experiences which were once seen as a normal part of life, such as pregnancy, child birth, aging, dying and bereavement, have been deemed matters for medical concern and control.”10
This increased medicalization is in tension with the dying process. While health care is focused on prolonging life, palliative care takes place after a terminal diagnosis and instead focuses on pain management and symptom control. As a palliative patient grows closer to death, treatment shifts from curative measures to palliative measures, involving both the patient and his or her caregivers. This process is known as the “continuum of care.”
Further, while extreme medical measures that separate a person from their natural setting are easily justifiable when the patient can expect to return to a normal life embedded in their community after recovery, a palliative patient cannot expect to recover. This suggests that increased focus should be placed on allowing them to die within their natural environment.
Those on all sides can agree that a humane end-of-life treatment plan would accept the inevitability of death, and that providing support to the patient and their loved ones throughout the natural process of dying need not make use of every life-extending technology and treatment just because they are available.
Aging Baby-Boomers: Not Getting What They Want
As numerous reports in the past fifteen years have shown, our current healthcare system is under increasing stress, as one of the most populous generations on record—the baby-boomers—ages and dies. In Canada, the projections suggest that between 2005 and 2036 the number of seniors 65 years and older will increase from 4.2 million to 9.8 million, which would lead to a doubling of the annual expected deaths.11This increase in the number of seniors has led to various efforts to improve efficiencies in Canada’s healthcare system, yet hospitals remain the main provider of end-of-life care for about 70% of Canadians.12
Yet as shown in the Harris Decima and Nanos polls quoted above, this is hardly what most Canadians want. And other reports validate this. D.M. Wilson, in The Journal of Palliative Medicine reports that 70.8% of Albertans prefer to die at home and 14.7% prefer a hospice. Only 7% prefer to die in the hospital.13 Another study found that of the 76% of Canadians who had planned for end-of-life care in 2013, only 15% preferred aggressive medical management, including resuscitation.14 It is import ant to reiterate that deaths within hospitals are not necessarily deaths without palliative care; in fact, in the Atlantic provinces it was shown that 59% of those who died in hospitals received some form of palliative care.15 The problem is that most hospitals are settings that disconnect individuals from their communities, and do not provide for the fulfillment of religious, cultural, and psycho-social needs of patients and caregivers as well as alternative institutions like long-term care facilities, hospices, or one’s home.
While many are not dying in their place of highest preference, it is again important to note that there remains a significant amount of regional variation in the location of death throughout Canada. In 2007, CIHI reported that 58% of Western Canadians died in a hospital, of which 62% were hospitalized at least once during the last year of their life for an average of 30 days.16 Hospital-based palliative care, however, was only received by a small minority (13% to 16%). And especially for those in rural settings, access to hospital-based palliative care was severely limited.
In 2011, CIHI published another report17 on death in the Atlantic provinces from 2007 to 2008. The findings showed that 63% of individuals died in hospitals overall, but 59% of those dying in a hospital received some form of palliative end-of-life care. Still, 71% of those who died spent an aver age of 26 days in the hospital in their last year of life.
It should also be noted here that variation in palliative care is not only due to regional capacity, but can also be due to diverse traditions of minority people-groups with different understandings of death. One example of this is the resistance that many aboriginal people have towards hospital-based end-of-life care. Such resistance is based in an understanding that hospitals often disconnect them from their communities at the most vulnerable moments in life. In the journal Health and Social Care in the Community, researchers interviewed aboriginals from the interior of British Columbia to find out why such resistance existed. One participant remarked: “A person [who] is getting sick […] doesn’t really want to go to [the hospital], because they don’t have any connections, they don’t know anyone. They don’t really want to go there to die, but they’d like a connection.”18 In the report, other participants indicated that death, ideally, should occur in a place determined by the individual, and this is necessary for providing the best care possible.
While it should be noted that these statistics do not cover decedents who received palliative care and moved to a hospital for the last days or hours of life, the consistent finding of this research is that Canadians in various regions and of various ethnic backgrounds desire to die at home or in a palliative care setting.
Counting the Costs
While the number of Canadians dying in hospitals has been slowly decreasing since a peak in 1994—a positive sign that changes are slowly starting to take place—there are still far too many Canadians not receiving the end-of-life care they desire. One commonly advocated solution is to create an integrated model of care where access to end-of-life care is more readily available (both geographically and economically) to all Canadians. Such an integrated model would see hospitals without any palliative care strategies as a “last resort” for dying Canadians, and multiple smaller organizations— ranging from home care and hospices to long term care facilities and hospital-based palliative pro grams— would step in to provide services up until the end of life.
The move to an integrated model of care would not only give more Canadians the death they desire and drastically improve comfort at the end of life, but would also significantly reduce government spending. Currently Canada spends 12% of its gross domestic product on healthcare.19 A growing proportion of this amount is spent on seniors: it has been estimated that more than 40% of total healthcare spending is accounted for by those 65 and older in Canada, a group that comprises only 20% of the population.20 The cost of dying in Canada ranges from as low as $10,000 dollars for a sudden death to between $30,000 and $40,000 for someone with a terminal disease like cancer or chronic obstructive pulmonary disease. However, introduction of hospital-based palliative care is estimated to save between $7,000 to $8,000 dollars per patient.21 In total, hospital-based palliative care could reduce the cost of end-of-life care by 50% or more simply by reducing the number of ICU admissions, diagnostic tests, interventional procedures and overall length of hospital stays.22
The expansion of non-hospital palliative care also provides an economic benefit. CIHI noted that per capita healthcare costs rise from $9,264 for a person younger than one year old, to $12,050 for those aged 75 to 79 and upwards, to $20,0113 for those 80 and older.23 Depending on these numbers, expanding access to quality non-hospital palliative care would have saved between $40 and $345.5 million between 2003 and 2011 in Ontario alone. Projected savings from 2012 to 2036 range from just under $247 million to just over $2.1 billion.24
But not all the costs of palliative care are borne by government healthcare systems. As of 2010, residential hospice palliative care programs were 50% funded by charitable donations.25 This means that even though moving to higher levels of hospice use would cut healthcare costs, it is also financially out of reach for many Canadians.
Another key component of an integrated model of care is providing support for those who wish to die at home, which could actually result in further reduces healthcare spending. While caring for a terminally ill patient in an acute care setting is estimated to cost over 40% more ($1100/patient/day) than providing the care in a hospital based palliative care unit ($630-$770/patient/day), providing at-home care ($100/patient/day) is by far the most cost-effective for government.26 A 2010 study estimated a savings of $35 million for every 10% of patients who are shifted from receiving palliative care in an acute care setting to receiving care at home.27
But for many families, dying at home is also not financially feasible. Currently, Canadian families shoulder 26% of the total cost of palliative care with home-based services, such as nursing and personal care services.28 In addition to financial cost, the time commitments in caring for a loved one who is dying are strenuous for the family members providing care. Family members have been called the “unsung heroes” of our end-of-life care system, performing an estimated $25 billion worth of care.29 It is estimated that providing care for a dying family member requires an average of 54 hours per week, but 64% of care providers polled by the CHPCA indicated they do not have enough time.30
The costs of poor alternatives to hospital care are also more than economic. “Alternative level of care” (ALC) patients in acute care beds waiting to be moved to another setting like residential care or re habilitation—are increasingly composed of seniors. The 2011 CIHI report on Canadian seniors and aging states:
Some of the time spent in emergency departments is the result of beds not being available for those already assessed and requiring inpatient acute care. This may be driven in part by challenges in discharging acute care inpatients experiencing ALC waits. On any given day, more than 5,200 acute care beds across Canada are occupied by ALC patients. Nearly 85% of ALC patients are age 65 or older; many (35%) are older than 85.31
This statistic is crucial because the increased duration of wait times of ALC patients has proven to have adverse effects upon the health of those already dying, and while about 15% of all ALC stays are only a few days, one in five (20%) lasts more than a month.32 Research shows that prolonged hospitalizations are associated with serious adverse outcomes of particular concern to seniors: accelerated functional decline, pressure ulcers, and infections.33
End-of-Life Care and Highly Vulnerable Populations
With regards to provision of government services, two especially vulnerable minority groups are first-generation immigrants and aboriginal peoples. Addressing the needs of these groups is increasingly necessary, given our aging population and the unique vulnerability of our aboriginal peoples and immigrant communities. Increasing support for palliative care and home care may also increase options for culturally sensitive end-of-life care for these groups.
The needs of immigrant communities are growing. The 2011 National Household Survey reported that 6.8 million (20.6%) of the Canadian population were first-generation immigrants. Statistics Canada projected that the first-generation population will continue to rise, reaching between 25% and 28% of the Canadian population.34 Aboriginal groups comprised 1.4 million people.35
Cultural norms need to be taken into account in providing end-of-life care to diverse ethnic com munities. Currently aboriginal communities are not provided end-of-life care that accords with their cultural beliefs and stated desires. Rather than receiving home care, often the dying members of these communities are transferred to regional and urban hospitals; separated from family, friends, and community members; and die in an environment which conflicts with deeply held cultural, familial, and spiritual values.36 Providing end-of-life care to individual aboriginal and immigrant populations will require an understanding and sensitivity to cultural beliefs, as well as a high degree of responsive ness to their expressed needs.
Our End-of-Life Care Landscape
The 2011 CIHI Seniors Report concludes with the following statement:
As age advances, the inevitability of the end of life becomes more salient, and the focus of care may therefore shift from treatment to palliation. As Canada’s population ages, taking a patient-centered approach to planning end-of-life care will be increasingly important. The literature suggests that seniors prefer to die in their own homes. Despite this, palliative care was among the top ten conditions for which seniors were hospitalized in Canada in 2009–2010. Eight out of every ten adults who died in hospital, and who had been receiving palliative care, were seniors. Most deaths in Canada occur in one of four settings: at home, in long-term care, in hospice or in an acute care hospital. In the decade between 1996 and 2006, the proportion of Canadians dying in hospital declined steadily, from 73% to 60%.This downward trend of in-hospital death corresponds with growth in community-based end-of-life care.37
As the report goes on to indicate, Canadians are united in their belief that health care needs to become more patient-centered if it is to improve; however, the only health care that “offers such care consistently, effectively, and across all jurisdictions is palliative care.”38 It must be noted that palliative care is designed to treat those who are dying at any age and is not about prolonging life but about reducing pain and suffering. As such, it is a “patient-centered, family-focused, and community-based care of the whole person.”39 Currently, palliative care strategies are employed in some but not all of our acute care facilities. Yet what many Canadians are unaware of is the fact that hospital-based acute care is only part of a larger continuum of the health care delivery system.
In order to better understand the current situation, it will be helpful to look at the current palliative care landscape through its FOUR main sectors:
• Palliative Care in the Home
• Community Care Hospices
• Long-Term Care Facilities (LTCs)
• Palliative Care in an Intensive Setting40