Consultations on Physician-Assisted Dying - Summary of Results and Key Findings
Part IV – End-of-life Care in Canada
"From an autonomy and informed consent perspective, unless there is available, easily accessible, comprehensive, robust end-of-life care, palliative care, to offer the option of assisted death impedes the exercise of self-determination and autonomy because you haven't been given the option, and even if you have, it isn't available to you in a robust way that can be actualized" -Dr. Thomas Foreman, Director, Champlain Centre for Health Care Ethics, Ottawa Hospital
There was general agreement that assisted dying frameworks must include mechanisms for careful review, and be accompanied by significant efforts to provide suffering individuals with good-quality health and social services. Canadians do not want assisted death to become the preferred option simply because other options, such as high-quality palliative care, are not accessible. Physician-assisted dying must not become an indication of the system’s failure to provide adequate end-of-life care. There appeared to be overall consensus among those who expressed their views to the Panel that a truly informed decision can be made only when the individuals is aware of and understands meaningful alternatives. This section of the Panel’s report examines the nature, quality and availability of these alternatives, and explores their relationship with the legalization of physician-assisted dying.
Meaningful alternatives include healthcare services, and social services and supports. The Panel recognizes that these areas are primarily under provincial and territorial jurisdiction, but feels that a full understanding of these alternatives is essential to any thoughtful consideration of physician-assisted dying. The Panel also recognizes that the federal government can encourage the provinces and territories to take action on matters under their jurisdiction. Should it choose to do so, the Panel suggests that such encouragement follow the principle of “cooperative federalism,” as affirmed by the Supreme Court of Canada on many occasions.
Chapter 13. A Critical Issue: Palliative and End-of-Life Care
The Panel believes that there is a broad consensus among Canadians for greater access to quality palliative care. Most interveners, experts and stakeholders—regardless of their position on physician-assisted dying—shared this view. The Panel heard calls for equal access to quality palliative care across Canada from a long list of groups, including the Canadian Society of Palliative Care Physicians, the College of Family Physicians of Canada, the Canadian HIV/AIDS Legal Network, the Canadian Association for Spiritual Care, the Catholic Civil Rights League, the Evangelical Fellowship of Canada, the Christian Legal Fellowship, Dying with Dignity Canada, as well as from experts and representatives of colleges of physicians and surgeons from across Canada. As Wanda Morris, CEO of Dying with Dignity Canada stated: “
[n]obody should have to choose an assisted death because the medical system has failed to give them other options.”
A. Defining Palliative Care
People living with, or dying from, advanced life-limiting illnesses have unique health care needs. Palliative care services are designed to help them live the remainder of their lives in comfort and dignity. The key components of palliative care are pain relief and symptom management, along with social, psychological, emotional and spiritual supports for patients, families, friends and other caregivers. The World Health Organization (WHO) defines palliative care as follows:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.Footnote 212
The WHO definition makes it clear that the objective of palliative care is to achieve the best possible quality of life for patients. The definition also sheds light on some misconceptions related to palliative care. For one, the definition specifies that the aim of palliative care is neither to accelerate nor to delay death. Also, even though palliative care is more commonly associated with incurable illnesses in near-death situations, it should be mentioned that persons in the earlier stages of illness may also benefit from a palliative approach to improve their quality of life in combination with treatments aimed at curing or resolving aspects of their illness.
Palliative care can be provided not only in hospital, but also in the community, such as at a hospice, long-term care facility, or in the home. Empirical research has found that palliative care is associated with better outcomes for patients (symptom management, quality of life, overall satisfaction), family caregivers (reduced burden) and the healthcare system (reduced hospital admissions).Footnote 213
Most people approaching the end of their lives are primarily cared for by family members, friends and their family physicians.Footnote 214 People with greater personal wealth and resources are often more able to access private services and supports. Where palliative care teams are available, there are specially trained doctors, nurses and other health care providers to provide assistance. Depending on the person’s needs, the palliative care team may include nurses with specialized training, a physician who specializes in palliative medicine, a pharmacist, a social worker, a spiritual counsellor, a bereavement support worker, a home care worker, a nutritionist, a physiotherapist and an occupational therapist.Footnote 215 Trained volunteers and informal caregivers may also be considered part of the team.
B. The State of Palliative Care in Canada
Hospice and palliative care emerged in Canada in the 1970s as greater attention and priority was devoted to managing the pain and other symptoms of cancer patients.Footnote 216 With advances in health care, many Canadians live longer lives. At the same time, the incidence of chronic and life-limiting diseases has also increased,Footnote 217 with close to 70% of all deaths in Canada due to illnesses such as cancer (30%), circulatory diseases (29%) and respiratory diseases (9%).Footnote 218 Many of these people experience pain, discomfort, and generally poor health in the final months and sometimes years of life.Footnote 219 When asked, most Canadians say they would prefer to die at home in the presence of loved ones,Footnote 220 yet almost 70% of deaths in Canada occur in hospital.Footnote 221 Better access to community-based palliative care options could be a way to accommodate Canadians’ preference to die peacefully at home.
Unlike countries with explicit priorities, goals and strategies, Canada does not have a national palliative care strategy, nor do most provinces and territories.Footnote 222 There is a general sense in the healthcare field that there is much room for improvement in terms of equity of access and quality as it relates to palliative care in Canada. The Senate of Canada published studies on palliative care in 1995, 2000, 2005 and 2010, and has recommended the development of a pan-Canadian strategy for a comprehensive system of palliative care.Footnote 223 What the Panel has heard from interveners, experts and Canadians in general throughout its consultations tends to confirm this observation. Some of the key gaps that have been identified are reported below, followed by avenues that governments can explore to move forward on this issue.
It has been reported that as few as 16-30% of Canadians have access to some level of palliative care.Footnote 224 However, empirical evidence about how many Canadians can access and actually receive palliative care at the ends of their lives is limited and the data inexact.Footnote 225 Nevertheless, it is generally accepted that there are wide variations in access and quality, with pockets of excellence contrasted with many areas that are woefully underserved. As such, palliative care in Canada is often described as a “patchwork quilt”Footnote 226 or as “a work in progress.”Footnote 227 Unquestionably, too many Canadians and their families do not have access to good quality palliative care and hence, have less than ideal and sometimes even tragic end-of-life experiences. Populations that are particularly vulnerable and often under-served at the end of life include people living outside of urban centres, indigenous people, children and new Canadians.
By international standards, Canada has fewer doctors specializing in palliative care than comparable countries such as the United States and Australia.Footnote 228 Out of approximately 77,000 physicians in Canada,Footnote 229 a recent survey identified just 51 palliative care specialists, as well as 123 family physicians whose practices focus on palliative care.Footnote 230 The survey also identified another 931 family physicians and specialists (e.g., oncologists, pediatricians) who provide some palliative care as part of their practices, but two-thirds of this group reported having no training in palliative medicine.
Out of approximately 360,000 registered nurses in Canada,Footnote 231 1,348 have certifications in palliative care,Footnote 232 a number that has been relatively constant after almost tripling between 2004 and 2008.Footnote 233
A 2014 survey reported that 23-26% of Canadian general practitioners/family physicians and nurses were very comfortable providing palliative care, 47-55% were somewhat comfortable, and the remainder (22-28%) either not very comfortable or not at all comfortable providing palliative care.Footnote 234
A 2011 survey indicated that only seven of 17 Canadian medical schools had more than ten hours of palliative care in their undergraduate programs.Footnote 235
C. Other End-of-life Care Options
While most of its conversations about end of life focused on palliative care and assisted death, the Panel heard about other choices and decisions that patients are entitled to make to have their wishes and desires respected.
One such option is for Canadians to state their preferences regarding treatments at the end of life in an advance-care plan or directive. Should a person become unable to make their own health care decisions, the advance-care plan provides guidelines to their loved ones and health care providers about their wishes.Footnote 236 In the absence of an advance-care plan (or when the advance-care plan does not address a given situation), an individual acting on the patient’s behalf can also make health care decisions for them. These individuals are commonly called proxies or substitute decision makers.Footnote 237 Another similar option is for an individual to complete a Do Not Resuscitate order. When such an order has been completed, medical professionals will not attempt to perform cardiopulmonary resuscitation if heart or respiratory failure occurs.
Individuals also have the right to refuse a treatment or to withdraw from a treatment already under way, even though the treatment in question could be needed to save, prolong or sustain their life. Similarly, a person has the right to refuse to take nutrition or hydration by any means (orally or otherwise).
Palliative sedation is a treatment that has been broadly defined and interpreted. According to the Canadian Virtual Hospice, palliative sedation may be an option of last resort when usual treatments cannot relieve severe and unbearable symptoms at the end of life. If this is chosen, and after it has been discussed with a competent individual (or the family or substitute decision maker), a medication is administered to provide comfort that cannot be achieved otherwise. Palliative sedation is a proportionate response, such that medications and dosages can be adjusted for varying effects (from calming to full sleep) and can also be reversed, allowing the person to be more awake. The goal of palliative sedation is not to cause or accelerate death, but to ensure that people are comfortable until they die from their disease.
Ultimately, Canadians should be able to make a truly informed choice between physician-assisted death, no medical intervention and excellent palliative care.
Chapter 14. Moving Forward
Disparities in access to palliative care across Canada and the need for a national initiative in this area have long been recognized, as discussed above and evidenced by reports and studies going as far back as 2000.Footnote 238 A relevant recent initiative is The Way Forward, a National Framework.Footnote 239 Led by the Quality End-of-Life Care Coalition of Canada,Footnote 240 managed by the Canadian Hospice Palliative Care Association and funded by the federal government, the initiative aims to guide health care professionals, health systems leaders, program planners and others in implementing an integrated palliative approach to care in their communities and organizations. The initiative could serve as a roadmap for future government funding or at least as a starting point for discussion. The Canadian Medical Association also published a National Call to Action on palliative care in May 2015.Footnote 241
"Given the pressure that the government is under following the Carter decision, this is an extremely important moment for all of us ... to urge the government to actually develop a national palliative care strategy and plan, and to adequately fund it" - Richard Elliott, Executive Director, Canadian HIV/AIDS Legal Network
The Supreme Court decision and the advent of physician-assisted dying in Canada may be the impetus needed to develop and advance a national palliative care initiative. Because responsibility for the delivery of palliative care clearly falls under provincial and territorial jurisdiction, pan-Canadian collaboration would be needed. Many interveners, stakeholders and experts argued that there is a need for uniformity across Canada, which might require a larger role for the federal government. Some stakeholders, such as the Canadian Society of Palliative Care Physicians, called for the development of quality indicators to help track and measure access to palliative care, as part of the reporting and accountability requirements of a physician-assisted dying framework.
A. Federal Role in Support of Improved Palliative and End-of-life Care
Over the years, the federal government has provided some leadership on issues related to palliative and end-of-life care, in accordance with the federal role in health.Footnote 242 Several relevant initiatives are described below.
1. Setting and Administering National Principles for the Healthcare System through the Canada Health Act
The Panel heard during its consultations that one way to make palliative care more readily and equitably available across the country would be to amend the Canada Health Act to specifically include palliative care. Although commonly heard, the proposal appears to reflect a misunderstanding of the Canada Health Act. In essence, the Canada Health Act establishes the criteria and conditions that provinces and territories must meet to be eligible to receive the funding known as Canada Health Transfer. The Actidentifies five main criteria and principles: public administration, comprehensiveness, universality, portability and accessibility. The Canada Health Act also establishes that medically necessary hospital and physician services are subject to the Act and that, as such, they must be available under provincial health insurance plans. The Act does not define or specify medically necessary services; this is left up to the provinces and territories. Amending the Act to include palliative care would again leave it to the provinces and territories to determine not only standards of care but also which treatments and services would be publicly funded. Unless all governments are willing to reopen and renegotiate the Canada Health Act, other options must be contemplated.
2. Assisting in the Financing of Provincial/Territorial Health Care Services through Fiscal Transfers
The federal government commonly funds programs and services delivered by provinces and territories, mainly through four mechanisms: the Canada Health Transfer, the Canada Social Transfer, Equalization, and Territorial Formula Financing. Already the largest major transfer to provinces and territories—worth $32.1 billion in 2014–15Footnote 243—Canada Health Transfer payments are set to grow by 6% through 2016-17 and will continue to grow by at least 3% per year through 2017-2018.Footnote 244 To receive funding under the Canada Health Transfer, provinces and territories must only meet the criteria and conditions outlined in the Canada Health Act; there are no other requirements. As a result, it would be difficult for the federal government to require provinces and territories to provide additional services as part of the existing arrangement. If the newly elected government were to reopen discussions with the provinces and territories on healthcare, palliative care would be an obvious item to include on the agenda.
Another way that the federal government can spur the provinces and territories to take action is by exercising its spending powerFootnote 245 and allocating additional dedicated funding. There are several examples of such funding arrangements in healthcare, although few in recent years.Footnote 246 From 2000 to 2006, for example, the federal government’s Primary Health Care Transition Fund allocated $800 million to the provinces and territories, and other health care organizations for improvements in primary health care. A similar mechanism could spur action on palliative care across Canada. It should be noted that some provinces do not recognize the legitimacy or the constitutionality of the exercise of the federal spending power in areas that fall under provincial jurisdiction. Québec, for instance, has in the past used the term asymmetrical federalism to describe federal spending related to healthcare.
3. Delivering Health Care Services to Specific Groups under Federal Jurisdiction
Under the Constitution, the federal government is responsible for providing health care services to members of First Nations and to the Inuit. It also provides health services to serving members of the Canadian Forces, eligible veterans, refugee claimants and persons in federal prisons. Some groups that appeared before the Panel indicated that the federal government could lead by example by providing improved palliative and end-of-life care to these populations.
4. Providing other Health-Related Functions, such as Public Health and Health Protection Programs and Health Research
The federal government has a number of healthcare responsibilities beyond funding services delivered by the provinces and territories. Health Canada and the Public Health Agency of Canada handle most of these responsibilities. Health Canada helps protect Canadians from unsafe food, health and consumer products; supports the delivery of health care to members of First Nations and the Inuit; promotes innovation in health care; and provides Canadians with information about health. The Public Health Agency of Canada focuses on preventing chronic diseases and injuries, and responding to public health emergencies and infectious disease outbreaks. A third organization, the Canadian Institutes of Health Research, supports research leading to improved health for Canadians, better health services and products and a stronger healthcare system.
The federal government has also supported a number of independent organizations that promote health system improvements and better decision making through knowledge-based activities. The operation of these organizations does not infringe on provincial-territorial responsibilities, as they do not deliver health care services. The Canadian Partnership Against Cancer, for example, leads and implements the Canadian Strategy for Cancer Control. The federal government could establish a similar process and designate an organization to lead a national palliative care strategy, in the spirit of cooperative federalism.
In the absence of an organization dedicated to palliative and end-of-life care, other pan-Canadian organizations currently funded by the federal government could—within the scope of their current mandates—consider activities to accelerate the adoption of best practices in palliative care across Canada.
5. Complementary End-of-Life Programs and Services
Although a few groups argued that a good palliative care system needs to be in place before access to physician-assisted dying should be granted, this option appears logistically complex. Dying with Dignity Canada made it clear that it strongly opposes additional delays, because they would punish those who are already suffering. Several submissions indicated that physician-assisted death and palliative care should not be presented and discussed in an antagonistic fashion.
Based on what the Panel heard, both palliative care and physician-assisted dying should be made available to Canadians in a way that meets the population’s expectations. Doctor Francine Lemire, the Executive Director and Chief Executive Officer of the College of Family Physicians of Canada, expressed this idea quite clearly during her presentation to the Panel:
While we urgently need better access to high-quality palliative care, better palliative care in and of itself does not address what Canadians are telling us about access to end-of-life options, which include medical aid in dying. Numerous polls indicate that a significant majority of Canadians believe medical aid in dying should be an option. And we have a responsibility as health care providers ... as decision makers and advisors, to listen to the public.
B. Ensuring Access to Extended Health Care Benefits, including Pharmacare, Home Care and Disability Supports
While palliative care was one obvious topic raised during the consultations, other health and social programs and services were also discussed. Richard Elliott, Executive Director of the Canadian HIV/AIDS Legal Network, highlighted the need for a national pharmacare plan, stating that it “
has been a terrible gap in our public health insurance system.” Many submissions also described gaps in homecare. The paucity of homecare precludes some individuals from being able to live independently, and limits how and where they can live, work and play. Enhancements to homecare could help alleviate some sources of vulnerability and suffering, potentially reducing some individuals’ desire to seek physician-assisted dying.
The Panel also heard that some solutions, such as disability supports and other social programs and services, can come from outside the healthcare system. As stated by David Baker, a disability rights lawyer: “
[d]isabled people and terminally ill people need to have access to independent living and the full range of support services. Choices about death should not be made because life has been made unbearable through a lack of choices and control.” The expectation is that supports for daily living help ease suffering. Richard Elliott summarized these considerations:
We need to make sure that people actually have adequate basic income and housing. ... [W]e need a national housing strategy, we need a guaranteed annual income, we need proper universal health care, including pharmacare and access to palliative care. ... All of our choices in life are constrained by our circumstances. It doesn’t mean we lose all of our autonomy, but we’re not all 100 percent autonomous, completely unfettered by the circumstances ... in which we live. To the extent possible, we should be doing what we can ... as a matter of social justice and of human rights, to ensure that people have as much autonomy as possible in making those decisions so that their autonomy is not constrained by poverty, is not constrained by homelessness, is not constrained by the fact that they don't have access to the medicines they need to alleviate pain, prevent suffering, ... treat conditions that can be treated, and that their autonomous decision about ending life, for example, is not being driven by the fact that they don't have access to adequate palliative care. ... So I think it would be really important for this Panel to come back and give to the government some considered views not just about specific parameters for when you might get assistance with dying, but the other things that the government should be doing and should have been doing really from the beginning, which is to adequately fund a health system, including palliative care, including universal pharmacare [and] basic minimum social conditions for life that actually mean that people live with dignity. That’s ultimately the underlying structural issue that needs to be addressed here. And the specific parameters about getting assistance in dying [are] really against that larger backdrop. So let’s make that backdrop better. The two really need to go hand-in-hand.
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