This page includes topics related to Palliative Care in Canada - Some of the subjects include:
The first palliative care programs were established in Montreal and Winnipeg hospitals in 1975. Four hundred and fifteen palliative care programs are now included in the 1994 directory of the Canadian Palliative Care Association. Canada has a reputation on the international scene for the development of hospital-based palliative care and for the quality of some of its palliative care professionals. However, many witnesses stated before the Committee that palliative care is still largely unavailable in Canada even in major cities,<$F"Is organized palliative care available throughout Canada? The answer to that question is a categorical "no" [...] also [that] it is not available in some major centres" (Latimer, 4:12)."There are very few people who receive appropriate palliative care services" (St-Germain, 9:23). "The number of patients who are dying who can receive palliative care is minuscule. If they have good hospice care, they do have pain control. We are concerned about the people who do not have palliative care" (Scandiffo, 8:48). "Palliative care in an organized and accessible form is available in any large urban centres in Canada [...] rural areas are the most difficult for service to be provided. The biggest problem has to do not so much with the quantity and placement of service as its connectedness or disconnectedness from other care" (Henteleff, 5:17). "This does not just apply to under-serviced areas. There are major centres where palliative care is not available to all of the people who require it" (McGregor, 4:53). "It is (palliative care) certainly not available in all communities, and especially in smaller communities; palliative care or, frankly, access to psychiatric resources, is difficult" (Rowand, 9:36).>although programs exist in every province.
The purpose of this appendix is to provide detailed information regarding palliative care services in Canada. We will briefly review the definition of palliative care, then analyze the position of palliative care services in the overall Canadian health care system, and describe the present situation in the provinces.
The high degree of specialization of medicine, the perceived anonymity of care, the emphasis on acute care in hospitals, and a tendency to be preoccupied with curing illness over easing suffering, by attending to the total needs of the person, have made many seek alternative approaches:
Many witnesses referred to the Health and Welfare Canada definition of palliative care:
Others referred to the World Health Organization which :
Mount, 5:30
Palliative care associations promote integrated delivery services such as care and support to dying persons and their families through teams of professionals and volunteers; bereavement support to families; and public awareness and education.
The Canadian Palliative Care Association (CPCA) was founded in 1991 and incorporated in 1993. It has a membership of some 250 individuals, provincial associations, and various programs and services organizations. VON Canada, the Canadian Cancer Society, the Canadian AIDS Society and the Canadian Society of Palliative Care Physicians are its four affiliate members. The CPCA receives financial support from Health Canada and it organizes national palliative care conferences every second year, publishes a Directory and promotes palliative care at the national level.
The typical provincial palliative care organization is registered as a charitable and non profit organization and is community-based. Nine out of ten were incorporated after 1990. They are advocates for palliative care policy development, adequate funding, the establishment of standards, and the development and expansion of palliative care services. They support palliative care groups and institutions by providing members education and development opportunities, networking, advocacy and informational services locally and nationally. They are financed through membership fees and charitable donations.
There is a dearth of published information on palliative care in Canada. Material has been provided by witnesses appearing before the Committee or gleaned from their briefs. Various governmental and non-governmental palliative organizations were asked to provide data. Articles are found in specialized journals, however, accurate statistical data is scarce about numbers of programs, institutions, number of patients, comparative costs, and other aspects of palliative care. Such material is not collected by Statistics Canada, the federal Department of Health or palliative care organizations.
The 1994 Canadian Directory of Services Palliative Care and HIV/AIDS lists palliative care services for all provinces and territories. Table I summarizes this information and table II lists the number of provincial palliative care programs for 1981, 1986, 1990, and 1994. For example, there were 55 programs in Ontario in 1981, 11 programs in New Brunswick in 1990, etc.
The information provided in these directories is of limited use as they are "based on self-reporting of services." Some services may not have been reported and some that are in the Directory may not qualify in the absence of verification. It is, therefore, hazardous to make comparisons between provinces. For example, statistics are provided but there is no indication whether they represent a week, a month or, the whole year so that the number of cases may vary dramatically.
The real extent of palliative care programs is not known at this time. The most quoted estimate is that less than five percent of dying people in Canada receive palliative care.<$F "Harry van Bommel's book, published less than a year ago, includes his survey of the situation which indicates that five per cent of patients who request palliative care have it available to them" (Ms. Seguin, 7:40 ). "Only five per cent of dying patients in Canada receive palliative care" (Mount, 5:30-31) "In their book, Health Care in Canada: A Description and Analysis of Canadian Health Services, (1988, 1990), Dr. Ralph Sutherland and Professor Jane Fulton estimated that about 5% of people who are dying receive some form of palliative care service" (van Bommel, 28:19). The full quotation is: "Dr. Ralph Sutherland and Jane Fulton estimate in their 1988 book, Health Care in Canada, that less than five percent of dying people in Canada receive palliative care through formal recognized palliative care programs. They further estimate that perhaps 10% of cancer patients may receive palliative care" (Harry van Bommel, Dying For Care - Hospice Care or Euthanasia, NC Press Toronto, 1992, 33. Finally, the Canadian Palliative Care Association has issued a release, in January 1995, stating that "only a tiny percentage of the population has access to palliative care services - about 5%". >This information was first cited in the Canadian Palliative Care Directory published in Toronto in 1987 by the Palliative Care Foundation from data collected in 1986. <$FScott, "More Money For Palliative Care?" Journal of Palliative Care, 1994, 16.>
To properly delineate the place of palliative care services in the Canadian health care system, we must define the involved jurisdictions and applicable standards and differentiate these services from long-term care. We also must examine issues in their development (such as funding for activities and training of health care professionals).
According to the Constitution Act and its subsequent interpretation health is a provincial jurisdiction in Canada.<$FWith some exceptions such as specific population (native people, military, federal prisoners, residents of the territories).> In practice, responsibility is shared with the federal government. The Canada Health Act defines basic principles. To summarize: "the federal government has [...] the financial resources to provide funding for health services but not the jurisdiction. The provinces have the jurisdiction but do not have sufficient financial resources to do what they choose"<$FAnne Crichton and David Hsu, The Canadian Health Care System: Its Funding and Organization, 1990, 28.> The federal government affects health services through activities by various departments and through its spending power. The federal government can also significantly impact on health delivery by way of legislation or changes to existing Acts or regulations.
There is no single standard for health care programs across Canada. While standards for medical practice are usually defined by medical associations, minimal standards for programs are usually derived from the philosophy and principles guiding an individual program and developed by various stakeholders such as hospital, professional associations, and governments.
In developing standards there is often a dynamic interplay between federal and provincial jurisdictions. The Canadian Council on Health Facilities Accreditation, the Department of Health, the Federal/Provincial Advisory Committee on Institutional and Medical Services<$FIts guidelines program dates back to 1972. "Guidelines are produced by expert working groups of health professionals, some of whom are government representatives. The final draft is reviewed and recommended by the Subcommittee (on Institutional Program Guidelines, composed of federal and provincial governments and professional representatives) for approval by the Advisory Committee" Health and Welfare Canada, Health Services and Promotion Branch, 1989, Palliative Care Services, Report of the Subcommittee on Institutional Guidelines, Guidelines for Establishing Standards, p. iv.> are major players. "Provincial jurisdiction is quite absolute, subject only to rights enshrined in the Charter of Rights and other components of our constitution, and to the exclusion of the limited areas of federal jurisdiction."<$FSutherland and Fulton, Health Care in Canada: A Description and Analysis of Canadian Health Services, Ottawa, The Health Group, 1988, 54.> However, federal legislation ensures Canadians of minimal, universal, and portable national standards in the delivery of health care programs. For palliative care, the following quotation from the Vice President of the Manitoba Hospice Foundation describes the actual process:
Kirk, 17:57
The Medical Director of the Palliative Care Program at St. Boniface Hospital added the following when asked if there are standards to follow for developing palliative care:
Dudgeon, 17:56
Palliative care is recognized as part of a continuum of care and services the objective of which is to improve the quality of one's last days by lessening physical, psycho-social and spiritual pain for terminally ill patients or for patients no longer in need of therapeutic or curative care.
The continuum may begin with family care by a family physician, continue with acute care in an hospital setting, than move on to long-term care and to community care in a home or in a hospice.
Long-term care is part of the same continuum. It is defined by the Canadian Long-Term Care Association as: "an integrated mix of services devoted to respecting personal autonomy, maintaining or promoting health or restoration, and providing social and personal supports as required."<$FBrochure, Canadian Long-Term Care Association.>
Long-term care is delivered "for sustained periods of time either on a continuous or intermittent basis"<$FIbid.>while palliative care is typically aimed at terminally ill patients. The average stay in palliative care services is very low: 19 days in the Maison Michel Sarrazin in Quebec City <$FDionne, 13:16.> and the median at Elizabeth-Bruyère Care Centre in Ottawa is between 15 and 21 days.<$FInterview with Dr. John F. Scott, Director of the Elizabeth-Bruyère Care Centre, December 7, 1994.>
Dr. Wyman, in his testimony, quoted the administrative definition of palliative care services used by the Ontario Medical Association:
Wyman, 20: 72-73
Some proponents of palliative care envision a "seamless" system where services are offered much earlier and patients do not have to relocate to receive appropriate care.
It is difficult to precisely delineate when one type of care begins and when the other finishes. Both offer community-based services and services "in nursing homes, homes for the aged, special care homes and extended care health centres<$FBrochure, Canadian Long-Term Care Association.>" The Ontario Palliative Care Association, in a brief concerning Ontario Bill 173, stated:
The blending of long-term and palliative care is encouraged by the shift of care in provinces from institutions to community-centred care and home care. Many long-term care services have palliative related components in them.
Health care is in a state of flux in Canada making it difficult to collect reliable facts on palliative care services and to expect that they will remain constant for very long. Large deficits have propelled provincial governments into reducing health spending. Health services are pressured to innovate to become more efficient. There is also a trend from hospitalization to community-based care.
In hospitals there is fierce competition by:
Currently, physicians are linked to hospitals and are paid on a fee-for-service structure<$FApproximately 75% of physicians in the 1980s; the rest were salaried. Salaried physicians were "researchers and teachers; diagnostic specialists, anesthesiologists or medical administrators; public health specialists and specialists in occupational medicine." Usually the medical associations determine a fee schedule annually, to be negotiated with their respective provinces. However, some specialists, such as psychiatrists, are paid by sessions, others (pathologists, radiologists) are usually employed by hospitals (Crichton, 1990, 69).> This system has been identified as one factor in health expenditures is rising significantly higher than the overall population increase <$FCrichton, 1990, 121; Lamarche, "The Crisis of Health Services in Canada" 1994, 12.> Witnesses<$F"The position of the College of Family Physicians of Canada is not so much for more funding, but for better distribution ... We believe that the fee-for-service system does not reward family physicians appropriately for the type of care they provide best, including palliative care" (Dr. Perkin, 23:10). "The other specific area that I was requested to comment on was the payment mechanism for palliative care in Ontario. In the mid 1980s, it became apparent to the tariff committee that we did not have appropriate fees to pay for the services of the growing number of physicians providing palliative care." (Dr. Wyman, 20:72).> have identified this form of payment as an obstacle to the development of palliative care, since it severely limits the time available to patients.
The situation is evolving. New Brunswick has innovated in setting up the New Brunswick Extra Mural Hospital which employs a professional medical staff. It is designed as a substitute to institutionalization, and an umbrella to provide for home care programs (see provincial section). A greater interest in preventive medicine has emerged; provinces are integrating some forms of community-based systems into their health care systems, and are creating regional structures for planning and delivering health services<$FA number of reports have been published including: Nova Scotia, 1990, Health Strategy for the Nineties . British Columbia, 1991, Report of The Royal Commission on Health Care and Costs.> Palliative care is more and more considered as an alternative to often excessively costly acute institutionalized care by provinces. At least four provinces have issued policy statements on palliative care, including Nova Scotia in 1988; Ontario in 1993, Alberta in 1993, and Saskatchewan in 1994).
In the 1990s certain aspect of the Canadian health care system are being questioned, including:
The system is one of the most expensive in the G-7 countries.<$FThe most expensive is the United States. Canada's per capita spending is $1915 US, Japan's is $1267 US, Great Britain's is $1035 US. 10% of the Canadian GDP is allocated to health compared to 6.6% to Great Britain and Japan and 8.3% in Italy. (Lamarche, 1994, 4.)> It has difficulties in meeting actual and future needs of the population, is inflationary (the impetus is to provide more services, which are mores sophisticated and more expensive), and contributes marginally to the upgrading of the health of the population.
Decentralization is one of the many options that is being implemented by several provinces to improve the efficiency of the system. Another is reducing high-cost acute care treatment and promoting continuing care, including home care:
These changes may translate into opportunities for palliative care. However, this raises the question of costs and effectiveness of this reorientation:
The extensive use of a large number of volunteers is one of the characteristics of palliative care in Canada, which currently operates within small budgets. Many witnesses believed that palliative care services are cost-effective because most palliative care centres involve an often large number of volunteers. Ms St. Germain, a nurse, stated:
St-Germain, 9:24
However, others doubted that palliative care services are necessarily cheaper. Dr. Elizabeth Latimer of Hamilton Civic Hospital declared that palliative care:
Latimer, 4:15, 4:21
The Director of Bioethics at the Hospital for Sick Children in Toronto reiterates that it is hands-on, not high-tech; it takes more people. (Lynch, 11:27). The President of Wellesley Hospital in Toronto added :
Rowand 9:44
The Executive Director of Maison Michel Sarrazin continues:
Dionne, 13:18
However, there is virtually no comparative data and there is a lack of comprehensive studies. The only studies actually cited were two in the United States and an unspecific reference to some data published in Ontario in 1988.
Another approach to the issue of cost is to consider that the last year of life in cancer patients may represent 75% of the total health care costs of their lifetime,<$FOxford Textbook of Palliative Medicine, 761.> and the claim that 25% of all hospital costs are spent in a patient's last month of life<$FJ. F. Fries, "Reduction of National Morbidity," in Aging and Health: Linking Research and Public Policy>. Costs are high because futile, aggressive and onerous treatments are used to keep the patient alive although some of these treatments may appear rather inappropriate for a dying person and even unethical according to some witnesses. They said that intensive invasive care caused increase in the chance of surviving.
A study done in Quebec in 1975-1976 led to the establishment of the Royal Victoria Palliative Care Unit in Montreal. At that time, palliative care unit hospitalization cost was deemed comparable to an acute care unit. Direct nursing personnel costs were slightly higher but that was compensated by significant savings from proper symptom control and, to a minor extent, by less expensive medication costs. Perhaps that study should be revisited to compare with actual experience over the years. But what is factual for one institution may not be valid for another.
Finally, some witnesses appeared pessimistic that palliative care can be made available while relying on volunteers and public and that it is difficult to innovate within the existing health care system.<$F"We must learn to better distribute our resources in health care [...] 90 per cent of our money are spent in large, acute care hospitals. That is great, but it means that people in chronic care, palliative care, and outreach into the community, are poorly supported" (Senn, 9:17).> However, most witnesses consider that the issues surrounding palliative care are more important than simple dollars and cents<$F"The cost of the health care system ought never, ever, ever to be used as a justification for ending life prematurely" (Rowand, 9:38). "I do not believe that cost has to be the critical factor in palliative care" (Seguin, 7:41). "As a compassionate and caring nation, we cannot afford not to (afford the cost of the extensive palliative care institutions)" (Mcpherson, 8:20). "It has been said that the true measure of a caring society is seen in the way it treats its most frail members" (McGregor, 4:53). "From the sixties and seventies, perhaps even since the war, came the belief in amelioration, the belief that things could constantly improve. The question we need to ask ourselves as a society is where we want to put our money, because many of the high-tech procedures are not paying off in the benefit that had been promised" (Latimer, 4:22)>.
Successful palliative care requires trained health care professionals. According to an inquiry by Dr. Neil Macdonald <$F"Ontario Palliative Care Statement: A Template for the Rest of Canada" Canadian Medical Association Journal, 1993,> none of the 16 Canadian faculties of medicine offers a formal palliative care course, although designated lectures within other courses are available to medical students<$F20 hours at McGill; Dalhousie 16+ ; McMaster 15.5; Calgary 11; UBC, Queens and Western from 1 to 3 hours.>. Only two schools of medicine stated that they have a "definite commitment to increased curriculum time". There are only 18.25 person years devoted to palliative care physician positions in Canadian universities. Dr. Macdonald, considering the lack of attention to palliative care, asks the question: "Why have not the principles of pain management and palliative medicine more clearly informed medical practice? His answer:
Another reason advanced by Dr. Macdonald is the view which is not uncommon in academic circles today that palliative research and education may be regarded as "soft" and lacking in intellectual rigor. Palliative care, he says, struggles for academic recognition: many of its practitioners are not connected with academic centres and it lacks an international communications system.
"Palliative care is a core health service that each community or region must provide", according to Paul Ramsay, Minister of Health, in a letter to the Committee in 1994. Mr. Ramsay said that since 1992, significant new funding has been allocated to palliative care/hospice programs to increase availability of services, train caregivers and volunteers, and develop educational and resource material. These had been among recommendations of the 1991 Report of the British Columbia Royal Commission on Health Care and Costs.
British Columbia reports having spent approximately $50 million on palliative care programs in 1994/95 within a system which is decentralizing by establishing regional/community structures. The Ministry of Health funds palliative care through various programs which link existing hospital and community based services such as home care nursing and the province's one dedicated hospice. Emphasis is placed on symptom management and services appropriate to the evolution of the illness. The province is "looking actively" at providing patients in their homes with drugs and equipment free of charge.<$FThe "home care" has a palliative care component when drugs and equipment are provided and palliative care services by physicians can be billed to the province.>
Dr. Williard P. Johnston, Secretary-Treasurer of the Canadian Physicians for Life and family practitioner in Vancouver, says palliative care in B.C. is only just beginning:
Johnston, 14:31
The President of the British Columbia Hospice/Palliative Care Association, told the Committee:
Coupal 16:36-37
Mr. Horgan, Chaplain of St. Paul's hospital in Vancouver where there is an active palliative care unit said:
Horgan, 14:157
The Vancouver Hospice program provides training in hospice care through Vancouver Community College in two courses (Palliative Concepts for Professionals in Care Facilities and Caring for Persons With a Terminal Illness). A third course, Advanced Hospice Training, will be offered in 1995. The Vancouver Hospice staff also provide Hospice Orientation to all continuing care staff.
The University of Victoria provides a course in palliative care in the School of Nursing; the British Columbia Medical Association has approved palliative medical care as part of the curriculum at the University of British Columbia, School of Medicine. Training material has also been developed by the Victoria Hospice Society and the British Columbia Hospice/Palliative Care Program.
Palliative care services in British Columbia are dependent on volunteers and their budgets are very limited.<$F"The budget of each hospice varies. For the most part, there is no provincial funding. Most of the monies are raised within the community." (Coupal, 16:49)> Medication and supplies are not yet reimbursed by the province for patients wishing to end their days in their home. Some regions are underdeveloped while others offer extensive services. Finally, "the fragmentation of existing services makes it very difficult to plan and to possibly reorganize services to meet the needs of clients, families and health care providers.<$FFax, Carr, Vancouver Hospice Program, December 5, 1994.>
According to the Government of Alberta:
In 1991/92, the Health Unit/Health Facility Partnership was implemented "to strengthen and enhance the delivery of community-based services to support earlier discharge, to prevent admission to health facilities, and to enhance community-based palliative care services." <$FHealth Canada, 1993, 16.> In December, 1993, Alberta Health published Palliative Care: A Policy Framework in which it identified principles by which a continuum of care and support services would be available to terminally ill patients and their families. These principles include individual and family focus; independence and choice; access to palliative care based on an assessment of needs; palliative care to be offered in any setting; integration of care; support of family and community roles; preference given to care in the home; hospital care as required; development of a multidisciplinary body of knowledge; continuity of care; and coordination of services.
Alberta is cost cutting deeply in health care. The province states that since 1991 Alberta Health has been identifying service improvement and cost cutting targets for each sector of the health system. In April, 1995, Regional Health Authorities became responsible for the development of all health care services in their jurisdiction.<$FAlberta Health, 1993, 4.>
Alberta Health states that the government will support palliative care through reallocating dollars from hospitals to the community. The new Regional Health Authorities will allocate these resources in their respective regions. The Palliative Care Policy Framework (1993) and local/regional needs will guide the Regional Health Authorities in the development and funding of palliative care services."<$FLetter, Donald J. Philippon, Deputy Minister, Alberta Health, October 20, 1994.>
The impact of the reform on palliative care services is yet to be evaluated. Mr. Hiebert, who represented the Catholic Health Association of Canada before the Committee, declared that:
Hiebert 14:143
Dr. L. R. Ohlhauser, Registrar of the Alberta College of Physicians and Surgeons, has written to the Committee that "there is now more emphasis on palliative care in both medical education and in practice." Although there is increased emphasis, not all medical practitioners are satisfied. Traditional medical emphasis on cure and doctor directed over client/family focused care is still prevalent in attitudes and even in some of the education according to some witnesses. The Alberta Palliative Care Association is concerned that the local administrators are not sufficiently aware of palliative care needs. The Association is providing them with information.
Palliative care is available in most parts of the province but not across all health care sectors, according to Alberta Health and the Alberta Palliative Care Association. However, palliative care is not always accessible by all individuals in the province and in many areas limited expertise or knowledge of the philosophy of palliative care results in poorly delivered care. Free-standing hospices, as well as volunteer services, and psychosocial supports, are not funded directly by Alberta Health at this time. Free-standing hospices are not funded directly by the province.
In Alberta, expertise in palliative care is available in major cities from major hospitals in Edmonton, the Hospice Calgary Society, the Alberta Cancer Board, palliative care organizations, and various long-term care facilities. The University of Alberta in Edmonton and the University of Calgary provide some palliative care training as part of nursing and medical curricula. There are also two certificate programs for nurses which are related to palliative care. These courses do not completely address the needs of all palliative care clients but focus mostly on clients with malignancies, pain control needs and AIDS. Distance and cost mean that courses are not easily available to nurses outside of the major urban areas.
The Palliative Care Association of Alberta identified numerous barriers to the development of palliative care services.<$FLetter, Sandy Doze, Co-Chair Palliative Care Association of Alberta; Maureen Scott, Co-Chair, March 4, 1994> These limitations summarize the situation in most provinces, according to palliative care advocates:
Financial: funding fitted into categories of long-term and acute care do not address the needs of palliative care patients; lack of a standardized statistical reporting system for reporting palliative care services; high cost of medication and equipment if patients return to their homes; insufficient pharmaceutical budgets in facilities; non-coverage, by the province Drug Benefit List of all palliative care-related medications; insufficient community funding for palliative care services.
Accessibility: time-lag after request for acute care beds and/or technologies, and difficult access to facilities for patients staying at home; private and appropriate environments are rarely available in facilities; inappropriate compensation for physicians involved in palliative care,<$FPhysicians are paid on a fee-for-service basis. Home visits and extra time for a patient are not considered.>; palliative care services are not available everywhere in the province; lack of understanding of palliative care patients' special needs by health administrators.
Education: lack, in palliative care education, of palliative care professionals and volunteers; lack of a specialized palliative care body of knowledge; lack of communication skills of health care providers; and lack of public knowledge of palliative care services.
Legislative: the current Hospital Act/Nursing Home Act places limitations on care levels allowed to specific facilities; lack of advance directives or legislation to ensure consideration of patients' choice.
Coordination: lack of a continuum of services and lack of adequate linking between services including links to specialty palliative care knowledge.
Research/Quality: lack of an evaluation model and standards for palliative care services; lack of research in various palliative care areas, including a focus on outcomes and quality of life for dying individuals.
Ethics: medical model of cure vs. care; service priorities; relation with euthanasia/assisted suicide.
According to Dr. Zach Thomas, President of the Saskatchewan Palliative Care Association:
In 1994, Saskatchewan Health released, in collaboration with the Saskatchewan Palliative Care Association, its Guidelines for Developing an Integrated Palliative Care Service that would extend existing programs and govern the establishment of new ones. It builds on current programs such as a Home Care Program established in 1978 which provides assessment, nursing, volunteer services and care coordination in 45 districts. Another long-term program, Special Care Home services "is provided by 171 special care homes and 99 hospitals. Approximately 93% of long-term care beds are in special care homes. Most facilities are operated by non-profit boards. 85% of long-term care residents have heavy care needs."<$FHealth Canada, 1993, 26.>
Funding for palliative care services is provided through the Health District which oversees:
The Saskatchewan Palliative Care Association promotes the advancement of palliative care services in the province through partnership with Saskatchewan Health to develop the provincial palliative care policy. It held a workshop in 1994 to facilitate the implementation of this policy throughout the province. It advocates enhancement and development of palliative care programs in Health Districts.
The Saskatchewan Palliative Care Association stated the provincial health care system is a world leader [in] realizing the significance of palliative care as a prime example of the "Wellness Model" of care." Funds are provided to support a "broad spectrum of palliative care initiatives," including "full benefit palliative care coverage and introduction of free supplies for palliative care persons in the community." The actual services provided are:
While initial palliative care programs were directed towards cancer patients, they are increasingly available to patients suffering from all types of diseases, including HIV/AIDS. The Association also promotes the establishment of a Provincial Palliative Care registry which would be a first of its kind anywhere, and would greatly enhance planning for service delivery and research initiatives.
The Saskatchewan Palliative Care Association contributes to numerous educational initiatives at all levels in the provinces such as an educational training program of community caregivers in rural areas; it also provides information and resources (phone calls, literature, books, videos, the Association newsletter, etc.. Training for physicians and nurses exists in Regina and Saskatoon. District medical societies and departments of Continuing Education (medical and nursing) organize and provide educational opportunities for physicians, nurses and other care-givers.
The Association identifies "management of pain, resolution of psychosocial problems and meeting of spiritual needs" as high priority needs to be met, as well as improving the awareness of both the caregivers and the public in general concerning palliative care programs, adequate provision of beds for long term care of palliative care patients in their own communities, continuous education, development of a body of knowledge in palliative care, and full integration in the health care delivery system leading to the creation of a "smooth flow system without seams and gaps so that persons can receive optimum care at the most appropriate location."
Dr. Thomas, president of the Saskatchewan Palliative Care Association is optimistic. He stated that the "health care reform initiatives have greatly benefited the development of palliative care services" in Saskatchewan, "as the health care services in each Health District come under one unified administration structure, this has facilitated: need based planning, team approach, appropriate resource allocation, and coordinated delivery. This has brought "wholesomeness" to the care being provided and thereby preventing fragmentation and sectorial considerations.<$FIbid.>
There are two palliative care centres in Manitoba; one is at the Riverview Hospital and the other at St. Boniface Hospital. The latter has about 200 active cases on their palliative home care program, which offers a telephone help-line. The Riverview Hospital also offers a home care program. According to Dr. Deborah Dudgeon, Medical Director of the Palliative Care Program at St. Boniface Hospital, most pain problems are managed by general practitioners. She added:
Dudgeon, 17:53
Manitoba Health provides palliative care-related services such as home care (therapy, oxygen, dialysis, etc.) and respite care (respite to caring family through short-term admission to a personal care home).
James C. Mcrae, Manitoba Minister of Health, wrote to the Committee that:
Dr. Peter Kirk, Vice President of the Manitoba Hospice Foundation, and Department Head of Family Medicine at the University of Manitoba told the Committee:
Kirk, 17:53.
Dr. Dudgeon considers that palliative care is given a low priority in the overall health care structure of Manitoba. For her, the province has not given any official or unofficial encouragement to the advancement of palliative care. The two major clients' needs which are not met are: home care support, and absence of knowledgeable physicians and nurses in the community for assessment and treatment of patients. One of the major barriers to the development of palliative care is the insufficient funding for human resources and education.<$FFax, Dudgeon, St-Boniface General Hospital, November 30, 1994.>
The Ontario Government is making significant changes to its health care system. In December 1992, the Ministry of Health announced an annual $4.8 million redirection of funds for:
The Ontario Palliative Care Association stresses that: "the most outstanding feature of the whole process of these initiatives was the key concept of partnership with many diverse groups sharing a common interest in improving palliative care delivery in Ontario."<$FIbid.>
Recently, the Ministry of Health has been focusing on the community-based service sector. With Bill 173, multi-services agencies will be created to manage and coordinate service delivery. "With the implementation of this Act, enhanced services for palliative care patients will be available in the community. This will allow for more flexibility in planning for services needed for palliative care patients at home."<$FIbid.>
According to the Ontario Palliative Care Association:
On June 15, 1994, Ms. Heather M. Balfour, of the Community Hospice Association of Ontario, described to the Committee the organization of hospice programs affiliated to her organization in Ontario:
Balfour 10:5.
The first Ontario hospice was created in 1979 in Windsor. In 1989, there were eight hospices in the province. (Most of the 60 affiliated hospices were created in the 1990s) Ms. Balfour expects that more hospice programs will be developed.
In December, 1992, the Ministry of Health provided funds for 30-hour courses for service providers and family physicians. It is also planned that 124 family physicians will receive formal education in palliative care as well as practicum in a palliative care setting. The five medical schools in the province share the responsibility for this program. Training is also available for volunteers.
Although progress is being made, the development of palliative care in Ontario must overcome a traditional absence of government policy, lack of financial support, professional and public ignorance and apathy. According to Ms. Balfour hospices lack staff 95% of persons working there are volunteers. The Association's view is that:
Quebec has a unique system where some doctors receive fixed salaries. This is an improvement over the fee-for-scheduled service system of other provinces wherein billable time for palliative work is a major problem. The building of multidisciplinary palliative care teams is thus facilated. According to Dr. Mount:
Mount 5:39
The originality of the Quebec model is: "the willingness to integrate health and social services in a common process of opening care practices to the more social dimensions of illness, misery and suffering."<$FRapport de la Commission d'enquête sur les services de santé et les services sociaux, (Commission Rochon) 1988, 400-401.>
Dr. Louis Dionne, Executive Director of the Maison Michel Sarrazin, provided the Committee with a positive portrait of palliative care services in Quebec:
Dionne, 13:22
La Maison Michel Sarrazin operates a home-care program in collaboration with local health centres and the Centre locaux de services communautaire. L'Association québécoise des soins palliatifs stated in its brief: palliative care services are implemented in all regions in Quebec, however, they are not well enough known and are badly operated."<$FL'Association québécoise des soins palliatifs, November 17, 1994.>
The palliative care service of the Royal Victoria in Montreal was created in 1974. It was the first service to integrate a home maintenance program, a consultative service for all hospital's patients, an external clinic, a bereavement program for families, and a specialized hospital unit which included teaching and research activities. It is the first in the world to be integrated into a short-term hospital. In St-Boniface's Hospital, in Manitoba Dr. Paul Henteleff, the president of the Canadian Palliative Care Association was the first, in Canada, to open a palliative care unit. The Royal Victoria palliative care service is still, after 20 years, an international reference model. Finally, in Montreal, l'Entraide Ville-Marie was the first home care service to be organized in Canada.
In 1991, the McGill Medicine Faculty and its Oncology Department, created the Palliative Care, Medicine, McGill division to maintain and facilitate the development of clinical programs and to ensure minimal palliative care standards in all participating hospitals. They also have the responsibility to devise a pre-doctoral curriculum, a post-doctoral teaching program and continuous medical training, including the organization, every second year, of the Care for Terminally Ill patients International Congress. There also is a clinical and psycho-social research program with affiliated institutions.
The Maison Michel Sarrazin created with l'Université Laval "La chaire de soins palliatifs de l'Université Laval" in 1992 to foster the development of teaching and research in palliative care. Activities are included in the curriculum of the 1st year as well as the 4th year for medical students.
The Quebec government strongly supports palliative care services and is geared toward providing a proactive response to the population's needs, according to Dr. Dionne. He further stated that education in palliative care is provided within the Quebec city region to almost all generalists and specialists. There is room to extend education and training opportunities to all health care professionals.
Dr. Dionne pointed to further research on the control of pain and especially suffering related to the psycho-social situation of the patient. He also believes that the public should be provided with current information on palliative care and other related issues.
Dr. Sydney Grant, Medical Director for the New Brunswick Extra-Mural Hospital and Medical Director of the Palliative Care Unit at the Dr. Everett Chalmers Hospital in Fredericton told the Committee "there is unofficial encouragement in our province in the sense that we have palliative care units in our major hospitals and that palliative care directors (when providing palliative care to patients) are paid on a fee-for-session basis."<$FFax, Haslam, December 8, 1994.> He also states that "there is enough funding in this province for palliative care"<$FIbid.> The following exchange with Reverend Kenneth Weir of New Brunswick is also worth noting:
Weir, 24:28-29
The New Brunswick Extra-Mural Hospital is responsible for palliative and acute care programs, as well as for a long-term home health program in New Brunswick. It was established in 1981 to address interrelated major health problems such as growth and aging of the population, high costs of construction and operations for hospital/care institutions, and a high prevalence of long-term degenerative conditions.
The New Brunswick Extra-Mural Hospital is a hospital corporation under the New Brunswick Hospital Act, patients are admitted, cared for and discharged by physicians, the staff is all health care professionals, and all patients have the status of hospitalized patients for insured services provided under the provincial legislation. Its objectives are to provide:
1) an alternative to hospital admission<R>2) an alternative or postponement of admission to nursing homes<R>3) long-term continuous home health care to chronic invalids, disabled of all ages, and terminally ill persons
Major services such as nursing (on a 24-hours basis), dietary, respiratory and occupational therapies, physiotherapy and social work (home makers, meals-on-wheels and sick room supplies), x-ray and laboratory services are offered through other institutions. <$FNew Brunswick Extra-Mural Hospital, Summary of Operations, 6.> The target population is the provincial population of New Brunswick., i.e. "those persons whose illnesses do not, or no longer, require the 24-hour surveillance, high technology, and the concentration of diagnostic and treatment services characteristic of the modern active treatment hospital".
Dr. Grant points to some resistance on the part of physicians to become involved in palliative care because of a lack of awareness of palliative care services and philosophy. For him, the main priority is public education on palliative care and death and dying issues. He also refers to a substantial need for respite care.
Ms. Brenda Haslam, Chair of the New Brunswick Palliative Care Association and Board Member of the Canadian Palliative Care Association agrees that the chief need is education for health care professionals and the general public. Stronger support services, including respite care are required.
In 1991, the province had the highest cancer mortality rate in Canada for women and the second highest for men, according to Statistics Canada. In 1993, there were 2,300 cancer deaths and 4,700 new cancer cases. The first palliative care programs in the province were developed to meet the needs of dying cancer patients.
Nova Scotia was one of the first provinces, in the mid-eighties, to adopt guidelines for palliative care services<$FNova Scotia Palliative Care Association 1994, (A) 3.>. The Government of Nova Scotia has adopted in principle a modification to its physicians' compensation system. The new arrangement is based on a session-fee scheme and is applicable to doctors practising in palliative care. The provincial Metropolitan Hospital recommended the establishment of a coordinated program of palliative care services into a provincial program of comprehensive oncology services available everywhere.
Palliative care services are "initiated and supported by community efforts in all sectors"<$FIbid. 1994 (B) 5. >. There is also a palliative care service (6 beds, a consultation service and a home care service) funded by the province in the Camp Hill Medical Centre in Halifax.
"There are 16 hours in the undergraduate medical curriculum specifically assigned to palliative care at Dalhousie University School of Medicine, while the Camp Hill Medical Centre, in Halifax, is affiliated with Dalhousie University as a teaching institution. Medical students may choose to do elective or selective rotations within the Palliative Care Service, and family medical residents may choose to do an elective in palliative care; in 1995, training periods will also be available for nurses."<$FLetter, Ina Cummings, November 3, 1994.>
Most palliative care services are situated in the Halifax Metro area and are accessible to a minority of patients according to the Nova Scotia Hospice/Palliative Care Association. Funding throughout Nova Scotia is considered "fragmentary and inconsistent" by Dr. Ina Cummings. She identifies education and resources as the major barriers to the development of palliative care in the province.
Ten beds are available in the province for palliative care. The Prince Edward Home, a long-term care facility, provides eight of them. A part-time medical specialist and two on-call physicians with palliative care training provide services. The average length of stay is 30 days and there often is a waiting list. The Prince Edward Home does not provide a 24 hour home care service. It can rely on approximately 200 volunteers. The Western Hospital provides 2 other beds in its palliative care unit. Referrals are made by family, health professionals and home care workers.<$FIsland Hospice Association, 1994, 19.>
In July, 1994, The Island Hospice Association identified limitations and gaps in the delivery of palliative care services in Prince Edward Island. They identified the problems as follows:
No official government policy on palliative care services.
No central information or referral to services and a "fragmented system of limited, unequal and unpredictable access to palliative care services [...] a convoluted entry point to available services".
Limited home care support, and no outpatient, consultation or formal educational services. Most resources are in the Charlottetown area.
A lack of professional and public education concerning availability of palliative care services. Patients of modest means are forced to rely exclusively on family physicians, who may have neither the time nor the expertise required to manage complex physical problems or to coordinate all the support required for the patients and their family.
A lack of formalized physicians' consultation service, which leads to large differences in pain and symptom management.
Limited after-hours support available: current home care programs are built on a model of short-term convalescent and long-term maintenance care for the elderly and the disabled.
A lack of alternative choices to institutional care.<$FIbid. 5-6.>
There is an eight bed facility at St. Clare's Mercy Hospital in St. John's and Dr. Margaret Scott's position as Provincial Palliative Care Consultant is funded by the Memorial University of Newfoundland and the Newfoundland Cancer Foundation. Dr. Scott says that local clinics and hospitals are developing palliative care services: "St.-Clare's has extended its service to acute care consultations; and the Cancer Foundation is establishing a designated interdisciplinary team. Funding for St.-Clare's palliative care service was $650,000 in 1993 (all other programs were part of the provincial Department of Health global budget). However, Dr. Scott did not have the average cost for palliative care beds in a hospital, hospice, or home care.<$FFax, Margaret Scott., December 2, 1994; accompanying text from Joan Davis, Assistant Deputy Minister (ADM) of Health, and input from E. Davis, Chief Executive Officer, Health Care Corporation of St. John's.>
The Newfoundland and Labrador government includes palliative care within its program of Continuing care but makes no special allocations for it. In a letter the provincial Minister of Health said the province "does not fund programs - funding is from institutional global budgets. A facility can set its own budget for specific programs within their global allocation." <$FLetter, Newfoundland and Labrador Minister of Health, November 14, 1994.>
The Newfoundland and Labrador Minister of Health, Lloyd G. Matthews, said in his letter:
Joan Davis, Assistant Deputy Minister of Health, identifies five gaps in service delivery: "availability of physicians who are willing to provide services in an individual home; access to services across geographic areas of the province; availability of equipment such as the pump for continuous subcutaneous infusion of medications (CSCI) for pain management; the home support often needed exceeds the available financial resources; and support and counselling for the family is very limited." Dr. Scott adds that some patients are not referred soon enough and that some health care professionals do not perceive palliative care as a therapeutic option.<$FFax, Margaret Scott, December 2, 1994; accompanying text from Joan Davis, Assistant Deputy Minister of Health, and input from E. Davis, Chief Executive Officer, Health Care Corporation of St. John's.>
Dr. Scott identified three major issues for the near future: "professional attitude, knowledge and availability; public awareness of palliative care; and ethical and research issues at all levels." She recommends emphasis on palliative care in undergraduate and postgraduate education, physicians' continuing education, and public debate.
The Northwest Territories does not provide separate funding for palliative care: "funding for palliative care cannot be isolated from the rest of the health care budget; it would however be very small in comparison to the overall health care budget."<$FLetter, Elaine Berthelet, Acting Deputy Minister, October 11, 1994.>
The Department of Health and Social Services stated that the Northwest Territories encourages the advancement of palliative care education through "a contract for gerontology services; education is one of the roles of the gerontologist and topics relating to palliative care have been included in the past for health professionals and community members."<$FIbid.> The Department said individual facilities provide training to their staff.
According to Joy Kajiwara, Director Continuing Care, Health and Social Services for the Yukon, "unofficial support is provided through funding for hospice [care] incorporated in global funding for hospital, operating budget for Home Care and continuing care facilities and contribution agreements to hospice."<$FLetter, Kajiwara, Continuing Care, Health and Social Services, Yukon, November 2, 1994.>
Information regarding the current status of palliative care in the provinces was provided by provincial health departments' officials and by representatives of palliative care associations who responded to an interview by telephone and filled out a questionnaire describing palliative care in their province, and by witnesses who appeared before the Committee.
Respondents felt the commitment to palliative care was substantial in four provinces: Saskatchewan, Ontario, Quebec and New Brunswick, while respondents felt that a low priority was given to palliative care in Manitoba and Prince Edward Island. Respondents from other provinces either expressed their concerns about the future of these services or stressed considerable gaps in services.
To summarize, the situation of palliative care in Canada reflects the current health care situation. It is characterized by change and great expectations as well as concern for the future since health care services are in a process of decentralization.
In 1994, a Select Committee of the House of Lords was struck to consider the "ethical, legal and clinical implications of a person's right to withhold consent to life-prolonging treatment and the position of persons who are no longer able to give or withhold consent; and to consider whether and in what circumstances actions that have as their intention or likely consequence the shortening of another person's life may be justified on the grounds that they accord with that person's wishes or with that person's best interests...". In addition, in the United States, several states had appointed task forces to analyze and make recommendations to the state legislatures with respect to end of life issues. The complete list of recommendations of the Medical Ethics Committee of the House of Lords and the New York State Task Force on Life and the Law have been reproduced below.
House of Lords Select Committee on Medical Ethics: Recommendations - January 1994
We recommend that there should be no change in the law to permit euthanasia.
We strongly endorse the right of the competent patient to refuse consent to any medical treatment.
If an individual refusal of treatment by a competent patient os overruled by the Court, full reasons should be given.
We strongly commend the development and growth of palliative care services in hospices, in hospitals and in the community.
Double effect is not in our view a reason for withholding treatment that would give relief, as long as the doctor acts in accordance with responsible medical practice with the objective of relieving pain or distress, and without the intention to kill.
Treatment-limiting decisions should be made jointly by all involved in the care of a patient, on the basis that treatment may be judged inappropriate if it will add nothing to the patient's well-being as a person.
We recommend that a definition of pvs and a code of practice relating to its management should be developed.
Development and acceptance of the idea that, in certain circumstances, some treatments may be inappropriate and need not be given, should make it unnecessary in the future to consider the withdrawal of nutrition and hydration, except where its administration is in itself evidently burdensome to the patient.
Treatment-limiting decisions should not be determined by considerations of resource availability.
Rejection of euthanasia as an option for the individual entails a compelling social responsibility to care adequately for those who are elderly, dying or disabled.
Palliative care should be made more widely available.
Research into pain relief and symptom control should be adequately supported.
Training of health-care professionals should prepare them for ethical responsibilities.
Long-term care of dependent people should have special regard to maintenance of individual dignity.
We support proposals for a new judicial forum with power to make decisions about medical treatment for incompetent patients.
We do not recommend the creation of a new offence of "mercy killing".
We strongly endorse the recommendation of a previous Select Committee that the mandatory life sentence for murder should be abolished.
We recommend no change in the law on assisted suicide.
We commend the development of advance directives, but conclude that legislation for advance directives generally is unnecessary.
We recommend that a code of practice on advance directives should be developed.
We do not favour the more widespread development of a system of proxy decision-making.
The principles identified by the Task Force are set forth below. The Task Force believes that these principles will offer important guidance for physicians while respecting the need for professional judgment in formulating treatment recommendations.<R>
Physicians have a professional obligation to provide appropriate pain relief and palliative care.
Physicians have a professional obligation to assess and treat depression or refer patients for treatment.
Physicians should not refrain from discussing a patient's suicidal thoughts, and indeed should explore, discuss, and respond to a patient's indications of suicidal thinking. This is an important aspect of care and also may facilitate prevention of suicide.
Physicians should not perform euthanasia or assist a patient to commit suicide. However, the provision of medication that may hasten a patient's death is ethically and professionally acceptable, provided the medication is not intended to cause the patient's death or to assist the patient to commit suicide, and the medication is provided in accord with accepted medical standards.
A physician may appropriately provide medication in the face of a known risk of suicide, provided that the benefits of the medication outweigh the risk and the physician has considered the comparable benefits and risks of alternative treatment options.
The provision of medication used by a patient to commit suicide does not, in itself, establish that the physician intended to assist the patient to commit suicide. Rather, an evaluation of the physician's intent must take into account a range of factors, such as the physician's reasons for providing the specific amount and type of medication, and whether the amount and type of medication could have served a legitimate medical purpose for the particular patient in light of identified treatment goals.
1. Patients' participation in treatment decisions contributes to their sense of self and well-being. Physicians should seek patients' participation in decisions about withdrawing or withholding life-sustaining treatment early enough in the course of illness to give patients a meaningful opportunity to have their wishes and values respected. (p. 153)
2. Health care professionals have a duty to offer effective pain relief and symptom palliation to patients when necessary, in accord with sound medical judgment and the most advanced approaches available. (p. 158)
3. Physicians and nurses must be aware that psychological dependence on pain medication rarely occurs in terminally ill patients. While physical dependence is somewhat more common, proper adjustment of medication can minimize any negative effects. Concerns about psychological or physical dependence should not prevent patients from receiving appropriate palliative treatments. (p. 160)
4. The provision of appropriate pain relief rarely poses a serious risk of respiratory depression. Moreover, the provision of pain medication is ethically and professionally acceptable even when such treatment may hasten the patient's death, if the medication is intended to alleviate pain and severe discomfort, not to cause death. (p. 162)
5. The education of health care professionals about pain relief and palliative care must be improved. Training in pain relief and palliative care should be included in the curriculum of nursing schools, medical schools, residencies, and continuing education for health care professionals. In addition, biomedical research facilities should engage in further research in the physiology of pain and its appropriate relief, both at the basic and the clinical levels. (p. 165)
6. Hospitals and other health care institutions should explore ways to promote effective pain relief and palliative care and to remove existing barriers to this care. (p. 167)
7. Public education is essential to improve pain relief practices. Nurses and physicians should create an atmosphere that will encourage patients to seek relief of pain. To the extent possible, strategies for pain relief should give patients a maximal sense of involvement and control. (p. 169)
8. Insurance companies and others responsible for health care financing should promote effective pain and symptom management and address barriers that exist for some patients. (p. 170)
9. New York State statutes regulations should be modified to improve the availability of medically necessary analgesic medications, including opioids. This should be done in a balanced manner that acknowledges the importance of avoiding drug diversion. (p. 171)
10. Health care professionals should be familiar with the characteristics of major depression and other common psychiatric illnesses, as well as the possibility for treatment. They must be sensitive to the special factors complicating the diagnosis of these conditions among the elderly and the terminally ill. Physicians must also be trained to distinguish major clinical depression from the sadness and temporary reactive depression that often accompany terminal illness. Major clinical depression is generally treatable and can be treated effectively even in the absence of improvement in the underlying disease. Patients should also receive appropriate treatment for less severe depression that often accompanies terminal illness. (p. 175)
11. It is common for terminally ill patients to have suicidal ideation, although patients rarely act on such thoughts. Physicians should create an atmosphere within which patients feel comfortable expressing suicidal thoughts. Discussion with a physician or other health care professionals about suicide does not prompts suicide; on the contrary, talking with health care professionals often decreases the risk of suicide. (p. 177)
12. When a patient requests assisted suicide or euthanasia, a health care professional should explore the significance of the request, recognize the patient's suffering, and seek to discover the factors leading to the request. These factors may include insufficient symptom control, clinical depression, inadequate social support, concern about burdening family or others, a sense of hopelessness, spiritual despair, loss of self-esteem, or fear of abandonment. These issues should be addressed in a process that involves both family members and health care professionals. (p. 179)
The Special Committee learned early in its study that the Netherlands' experience with euthanasia and assisted suicide was particularly controversial in Canada. In part, this was probably because of misunderstandings as to the status and definition of euthanasia in the Netherlands. Euthanasia and assisted suicide are criminal offences under the equivalent of our Criminal Code, but neither action is prosecuted if certain conditions are met and safeguards observed. Because of differences in the structure of the criminal law, this situation would not be possible in Canada and can be difficult for Canadians to grasp. The legal situation and the definition of euthanasia in the Netherlands are discussed in detail in section 2.0 of this paper.
Partly as a result of legal and definitional differences, some witnesses said that euthanasia was performed far more often there than was officially admitted. Others suggested that the introduction of semi-legalized euthanasia had inhibited the development of good palliative care, in contrast to England where euthanasia is illegal and there is an extensive network of hospices. Still other witnesses argued that the Dutch example supports the "slippery slope" argument: that any condonation of euthanasia or assisted suicide detracts from the absolute value of life and will inevitably lead to its increasing prevalence among both consenting and non-consenting patients. Particular concern was expressed for the elderly or disabled, who might feel social or emotional pressure to request euthanasia so as not to be a burden on their family or society.
In order to deal with these concerns, the Committee held a video-conference on October 25, 1994 with a number of Dutch legal and medical experts experienced in the issues of euthanasia and assisted suicide.<$FSee Appendix A for a list of participants.> The video-conference included two sessions lasting more than six hours. The following paper is based on the results of those discussions, as well as on background documentation published in both the Netherlands and Canada.
In his introductory address to the video-conference, Dr. Gerrit van der Wal addressed criticisms of the Dutch system and described the concerns about euthanasia and assisted suicide that exist in the Netherlands itself:
van der Wal 20:10-11
Although it seems probable that the approach of the Netherlands to euthanasia policy will continue to generate controversy, there is one point on which there appears to be consensus. At no point was it suggested to the Committee that the Netherlands model could be successfully transferred to Canada. There is much to learn from the Netherlands, if only because the Dutch approach has resulted in better data on euthanasia being available than in societies where euthanasia remains illegal. However, Dutch experts are the first to point out that the Netherlands' approach to euthanasia evolved from specific aspects of Dutch culture, and is not transferable. Dr. van Delden, one of the participants in the video-conference, has put it as follows:
1.1 The Cultural Setting
The Netherlands has a population of 15 million people, and had 129,000 deaths in 1990, the year the van der Maas study was undertaken (see section 3.0 for a description of this study). The Royal Dutch Medical Association has noted that a variety of social factors led to the current view on euthanasia: increasing emphasis on patient decision-making, and an openness on the part of doctors to discuss with their patients their condition, treatment and prognosis; an increasing emphasis on personal autonomy; and the focus of Dutch churches, other than the Roman Catholic Church, on moral choices made by the individual.<$FHouse of Lords, Report of the Select Committee on Medical Ethics, London, 31 January 1994 Appendix 3, pp. 64-66.> In 1991, the religious affiliation of the population aged 18 years and over was 34 per cent Roman Catholic, 17 per cent Dutch Reformed Church, 8 per cent Reformed Churches, 5 per cent other religious affiliation, and 37 per cent with no religious affiliation.<$FThe Statesman's Year Book, edited by Brian Hunter, 130th edition, 1993-94, pp. 998-999.>
Commentators on the Dutch cultural milieu invariably mention an entrenched pattern of openly discussing difficult issues.
Nieuwenkamp 21:31
Dr. van Delden has put it as follows: "I can safely say that Dutch society is one without extremes. In a sense almost everyone belongs to the middle class, and this probably has some bearing upon the fact that as a society we do not operate in a very antagonistic or legalistic way. Ours is a society characterized by the philosophy of "talking it over again," of trying to reach consensus.<$FJ.J.M. van Delden, "Euthanasia in the Netherlands: the Medical Scene", in Euthanasia in the Netherlands: A Model for Canada?, p. 23.>
From the Dutch point of view, the difference between their experience and that of other countries is largely the openness with which the Dutch discuss the issue of euthanasia. The information that they receive from other countries indicates that euthanasia, by the Dutch definition, is being practised clandestinely .
Legemaate 21:32
1.2 The Health Care System
The Dutch are proud of their health care system, which is highly developed and universally available. In 1991, the following figures applied:
The total cost of health care was 51.4 billion guilders, or 9.6% of the gross national product. <$FIn Canada, health expenditures levelled off at 10.1% of Gross Domestic Product (GDP) in both 1992 and 1993. (Health Canada, National Health Expenditures in Canada, 1975-1993, p. 3).>
There were 165 hospitals which supplied modern health care with state of the art technology. There are 60,000 beds for a population of 15 million. Most of the health care institutions are private, non-profit institutions.
Every Dutch citizen was registered with one of the 6388 huisartsen or family physicians (GP's). Most primary care is provided by the G.P. in the patient's home, or in an office in the physician's home. The family physician lives in the same neighbourhood as his patients, makes house calls when the patient is too ill to come to the office, and normally has the entire family in his care. 75 per cent of the Dutch see their G.P. at least once a year.
There is a mixed system with private insurance and national health insurance under the Health Insurance Act. About 60 per cent of all inhabitants are insured under the latter scheme for virtually all health care expenses.
Only 2 percent are uninsured, but even they are covered by the Exceptional Medical Expenses (Compensation) Act which provides for a national insurance scheme under which everyone is insured regardless of income. The Act covers serious medical risks (such as a stay in hospital longer than one year and admittance to a nursing home) which cannot be borne by the patient personally and for which it is difficult to obtain insurance cover.
There is a legal duty imposed on all health care professionals to provide necessary care. Refusing or discharging a patient for economic reasons is a criminal offence.<$Fvan Delden, "Euthanasia in the Netherlands", pp.23-24.>
Even though nearly all Dutch people are insured Dr. Bakker did caution the committee that economic considerations must be kept in mind.
Bakker 21:67
In the vast majority of cases, the patient-physician relationship is longstanding, perhaps 10 or 20 or 30 years, at the time a request for euthanasia is made.<$FMishara 2:36>
The Royal Dutch Medical Association has a membership of 25,000, plus an indirect association with 8,000 to 10,000 physicians. The Dutch Physicians' League, an organization of doctors opposed to euthanasia, has a membership of about 650 physicians. There are approximately 40,000 doctors in the Netherlands in total<$FDillman 21:25; House of Lords, Appendix 3, pp. 64-66.> and some belong to both organizations.<$FBakker 21:36>
Even within the Dutch Physicians League, there are differing viewpoints on the best approach to opposing euthanasia. Dr. Zbigniew Zylicz, for example, is trained in the British school of palliative care, and the founder and medical director of the Hospice Rosenheuvel. His reason for founding the hospice was to prevent euthanasia through good palliative care.
Zylicz makes no secret of his ardent opposition to euthanasia. He is one of the 600 doctors who are members of the Nederlands Arstenverbond (NAV), or Dutch Physicians' League, which split from the Royal Dutch Medical Association over its stand on abortion and euthanasia.
But Zylicz disagrees with the NAV's anti-euthanasia tactics which consist, in part, of mud-slinging against mainstream Dutch physicians and the use of what he calls questionable research data. The NAV's tactics are too radical, and only reinforce the polarized views on the subject, Zylicz said. <$FMullens, "A place where euthanasia is talked about but is not offered", in Euthanasia: Dying for leadership, p. 33.>
The role of nurses in the health care system, and more particularly in the issue of euthanasia, was not completely clarified by the video-conference. The one nurse who participated indicated that a nurse's role in decision-making could vary considerably depending upon the physician and head nurse involved:
Vlaming 21:20
There also seemed to be some disagreement about whether a nurse's personal views on euthanasia could affect her or his career, not dissimilar to the debate that takes place in Canada about the effect of a nurse's views on abortion on her or his career.
Vlaming 21:69
In response to a question about how many nurses in Holland are pro-euthanasia or anti-euthanasia she replied as follows:
21:70-71
When Mrs. Vlaming was asked to expand on what the nurses felt were the main issues regarding euthanasia she responded:
Vlaming 21:23
1.3 The Nursing Home System
The nursing home physician is a member of a distinct medical specialty, with its own licensing authorities and a separate training regime of approximately three years after a doctor has received his basic qualifications.<$FDillman 21:63>
van der Wal 21:37
1.4 Pain Control and Palliative Care
A number of witnesses before the committee suggested that the Dutch approach to euthanasia had resulted in the underdevelopment of palliative care and hospices on the British model. Alternatively, they suggested that the demand for euthanasia in the Netherlands resulted from deficiencies in palliative care treatment. A majority of the Dutch themselves feel that these are both characterizations of the situation are inaccurate.
The government summary of the Remmelink Report refers to the importance of terminal, or palliative care:
By terminal care, the commission means the whole of assistance and care on behalf of dying humans and their next of kin. Optimal care for someone dying implies that the doctor has knowledge of adequate treatment for pain, of alternatives for the treatment of complaints about unbearable pain and awareness of the moment at which he must allow the process of dying to run its natural course.<$FThe Netherlands, Ministry of Welfare, Health and Culture, "Medical Practice with Regard to Euthanasia and Related Medical Decisions in the Netherlands: Results of an Inquiry and the Government View", VDB 92-034, p. 8.>
During the video-conference, Dr. Heintz suggested that the number of patients who actually receive euthanasia is fairly low, notwithstanding its availability, indicates a high standard of palliative care both in the hospital and in the home situation.<$FHeintz 21:17> The number of cancer patients who have euthanasia or assisted suicide in the Netherlands is in the range of 5 per cent, which is compatible with what the Committee was told about the percentage of patients in Canada whose pain cannot be controlled.<$Fvan Delden 21:24>
At the heart of the Dutch approach to end-of-life issues is the question of autonomy and personal choice. When the House of Lords Select Committee on Medical Ethics visited the Netherlands to discuss the issue of euthanasia, the Deputy Head of the Medical Ethics Section of the Dutch Ministry of Welfare, Health and Culture, observed:
Dame Cicely Saunders [the head of the British hospice movement] had said that she would, if necessary, render patients into a state of pharmaceutical oblivion, but that for many this was not an acceptable condition. People who did not share Dame Cicely's Christian belief might prefer not to die in such a condition, but to choose euthanasia instead.<$FHouse of Lords, op. cit., p. 67.>
While the Dutch do not have the British system of hospices, it is a deliberate policy rather than a sign of neglect. The Dutch system believe in bringing palliative care to the patient rather than the patient to palliative care.<$Fvan Delden, "Euthanasia in the Netherlands", p. 24.> On the whole it integrates palliative care into other aspects of the health care infrastructure. For example, a system of Comprehensive Cancer Centres covers the whole country. At these centres, health care organizations, hospitals, GPs and nursing homes can obtain advice or consultation from all the cancer specialists, including the palliative care specialists.<$FHeintz 21:28>
As Dr. van Delden noted during the videoconference:
van Delden 21:28
Some physicians who are opposed to euthanasia agree that palliative care must be approached differently in the Netherlands. As Dr. Zbigniew Zylicz, the founder and medical director of the Hospice Rosenheuvel, notes:
In Britain, there is more of a tradition of hospitalization, of institutionalization for dying. It is different here. Dutch people are used to dying at home. In Holland, statistics show that 42 per cent of patients die at home, with fully available home nursing care, compared to only about 20 per cent in Canada and Britain. . . . . To create more institutions will not help. We do not need here in Holland 40 or 50 hospices. We need a new way of thinking. What we need here is 30 to 50 consultants on palliative care who can work with the doctors in the community, visit patients in their homes. We need university training programs to teach the advanced methods of pain and symptom control<$FMullens, "A place where euthanasia is talked about, but not offered, in Euthanasia , op. cit., pp. 33-34>
Other physicians who are opposed to euthanasia believe that there is a need for more palliative medicine in Holland but that it has been hindered because of economic motives. Dr. Karl Gunning, a Dutch physician whose testimony the committee heard before the video-conference, commented:
Gunning 17:91
1.5 What the Doctors Say
Dr. Dirkyan Bakker was the only participant in the video conference who stated that he was against euthanasia for personal reasons:
Bakker 21:36-37
The Committee was also told that, for those physicians who will perform euthanasia, it is always a difficult act.
Leenen 21:67-68
When the Dutch panel was asked if physicians ever said "Never again" after performing euthanasia, one replied:
De Heer 21:68
One of the participants in the video-conference was Professor Leo Meijers, the Advocate General, Supreme Court of the Netherlands, who described his role as an independent scientific advisor of the Supreme Court. Another was Mr. Eugene Sutorius, a defense counsel specializing for the last ten years in Dutch law on euthanasia, a deputy judge in the Court of Appeal in Amsterdam and a member of the Ethics Committee of the Royal Dutch Medical Association.
As Mr. Sutorius pointed out during the video-conference,
Sutorius 21:29
Trial by jury, for example, is unknown in the Netherlands. Procedures for the administration of justice are mainly embodied in the Code of Civil Procedure and the Code of Criminal Procedure, although provisions relating to administrative procedure are found in a variety of statutes. Sixty-two cantonal and 19 district courts are courts of first instance. From district courts, appeals lie to five regional Courts of Appeal and then to the Supreme Court. All judicial appointments are made by the Crown.
The Supreme Court at the Hague has several divisions, each consisting of five judges headed by an advocate-general for a total of 24 justices. Known as the Court of Cassation (the power to quash), the Supreme Court hears appeals involving procedural errors or mistakes of law. If the Supreme Court allows an appeal on a point of law, it may be necessary to send the case back to a trial court to review how the facts of the case relate to the law as restated by the Supreme Court. The lower courts are autonomous and not bound by Supreme Court decisions. However, if they do not follow the legal principles established by the Supreme Court, their decisions will naturally be appealed to the Supreme Court. Hence, they tend to follow the precedents established by the Supreme Court even though not legally bound to do so.<$FLeenen 21:33.>
Criminal proceedings may be instituted only by the Department of Public Prosecutions. It is composed of the Advocate-General, the Solicitor-General and the advocates general at the Supreme Court; five attorneys-general, advocates-general and solicitors-general at the courts of appeal; 19 chief public prosecutors, and traffic magistrates attached to district and cantonal courts for a total of 250. The department is structured hierarchically in the same manner as the judicial system. The Advocate-General is independent and is appointed for life. He is consulted by the Supreme Court in all cases brought before it and may initiate an appeal "in the interests of law" on his own initiative.<$FGeorge Thomas Kurian, Encyclopedia of the First World , Vol. II, pp. 775-6; >
The Department of Public Prosecutions has considerable independence. Dutch law recognizes the principle of opportunism as opposed to the principle of legality. This means that a public prosecutor is not bound to prosecute except on the express order of a court of appeal, the minister of justice or the procurator general. Mr. Sutorius emphasized the importance of the prosecutor's role in Holland:
Sutorius 21:39
It is this discretion on the part of the individual prosecutor and, ultimately, on the part of the Minister of Justice, that permits the unique Dutch approach to euthanasia and assisted suicide. Although both acts remain illegal under the Criminal Code, it is universally understood that no prosecutions will be initiated if certain conditions are met. In Canada, prosecutors have considerable discretion as to whether or not to initiate a prosecution depending upon their assessment of the likelihood of a conviction, but none to refuse a prosecution on "public interest" grounds where they are convinced that a criminal act has taken place and is provable. As well, with certain specific exemptions, criminal prosecutions are initiated by provincial prosecutors, and the imposition of national guidelines would be extremely difficult.
2.1 Definitions
As Mr. Sutorius pointed out during the video-conference, "it is not easy to translate [Dutch] concepts into proper and meaningful definitions which [Canadians] would understand"<$FSutorius 21:39>, and this leads to numerous misunderstandings and misinterpretations of the Dutch situation.
Euthanasia is defined as a criminal offence under Article 293 of the Netherlands Criminal Code: "Anyone who takes the life of another person at that other's express and serious request, will be punished with a prison sentence of a maximum of twelve years, or a category five fine."
Assistance in committing suicide is defined as a criminal offence under Article 294 of the Netherlands Criminal Code: "Anyone who deliberately incites another to commit suicide, assists him in so doing or provides the means for him so to do will, if suicide follows, be punished with a prison sentence of a maximum of three years, or a category four fine."
Three important points are implied by these definitions. Firstly, euthanasia and assisted suicide are acts; they are defined as doing something, usually handing over or administering a drug. They are not defined as refraining from action — that is, not starting or stopping a treatment (not even by the action of changing the switch of a ventilator). Secondly, euthanasia and assisted suicide are defined as voluntary (at request), thereby excluding particular patients, such as newborn infants or comatose patients. Thirdly, the term "intentionally" is usually interpreted as "with the primary intention of". Thus the treatment of pain, for example by high doses of morphine, with the secondary effect of shortening the life span, is not considered to be euthanasia.<$FGerrit van der Wal and Robert J.M. Dillman, "Euthanasia in the Netherlands," British Medical Journal 1994; 308: 1346, at 1346.>
Although assisted suicide and euthanasia have different legal consequences, a moral distinction between the two acts is not usually made in the Netherlands. In both cases, the physician has to comply with same procedural and substantive requirements.<$FProfessor J. Legemaate, "Legal Aspects of Euthanasia and Assisted Suicide in the Netherlands 1973-94", a paper presented at the Euroconference on euthanasia and assisted suicide, Maastricht, June 10-11, 1994, p. 1 (to be published in the Cambridge Quarterly of Healthcare Ethics).>
Finally, article 40 of the Code states: "It is a defence to a criminal charge if the accused was compelled to action by overmacht." The defence of overmacht was described by Dr. Gerrit van der Wal during the video-conference:
van der Wal 21:9
As Professor H.J.J. Leenen, Professor Emeritus of Social Medicine and Health Law, pointed out, the term force majeure is a concept used in civil, or private, law in North America, but not in criminal law. Therefore, he suggested that it would be better to use the term "necessity", a concept familiar to the Canadian criminal law.<$FLeenen 21:14, The defence of necessity arose in Canada during the recent Latimer case.>
A recent paper on the defence of necessity describes the common-law situation as follows:
In theory, then, the defence of necessity is not precluded when the accused is charged with what in effect amounts to a mercy-killing, even when ... the deceased did not consent to the act. However, even if the accused is a physician and the deceased his patient who had pleaded for a lethal injection to end his misery, the public policy of the common law is that the defence of necessity cannot be allowed to undermine the prohibition against active voluntary euthanasia (or for that matter, physician-assisted suicide). In fact, in none of the small handful of mercy-killing cases against physicians has the accused even raised a necessity defence.
The policy is illustrated by the unreported 1992 English case of R. v. Cox, in which the accused-physician was charged with attempted murder after he gave a lethal dose of potassium chloride to a 70-year-old patient who had begged him to end her life. The patient was dying of rheumatoid arthritis, complicated by gastric ulcers, gangrene and body sores; and near-fatal doses of heroin were unable to relieve her agony. (The reason that Dr. Cox was not charged with murder was that the patient was so near death that the pathologist could not prove that the injection of potassium chloride had caused the death).
Still, the accused did not seek to excuse his act on the grounds of (medical) necessity... The accused was therefore left without a defence to the charge, and the trial judge accordingly instructed the jury that the evidence of guilt was overwhelming and that it had no option but to convict. The jury complied, although a number were in tears when the verdict was announced. Dr. Cox received a one year suspended sentence, and although reprimanded by the General Medical Council he was not stricken from the medical roles.
In sum, although the defence of medical necessity has been recognized in abortion cases, the Cox case illustrates the unwritten common law rule that it is not available in euthanasia cases. In the Netherlands, on the other hand, the judiciary has carved out what amounts to a defence of medical necessity in cases involving physicians who either give lethal injections to or assist the suicide of consenting patients.<$FSneiderman and Verhoef, pp. 6-9>
Another term used to describe the defence of necessity is noedtoestand, which is technically translated as "situation of necessity". "However, in the case of euthanasia the "necessity" which has been recognized by the Dutch courts is not a general necessity but specifically a medical necessity, measured in terms of the state of medical knowledge and the professional norms of doctors, and it seems clear that no one but a doctor can successfully invoke it.<$FJohn Griffiths, University of Groningen, Faculty of Law, unpublished paper, p. 1.> In brief, the Dutch defence of noedtoestand recognizes a situation in which a doctor is faced with a situation of emergency, and committing a crime is considered a lesser evil than adhering to the letter of the law. There is no reasonable alternative to breaking the law because the intent of the doctor is to relieve suffering and there is no alternative method.<$FBarney Sneiderman, "Euthanasia: Law Reform and Social Policy", in Euthanasia in the Netherlands: A Model for Canada , p. 9.>
2.2 Judicial Interpretations
Starting with the Postma case in 1973, a series of prosecutions against physicians accused of euthanasia or assisted suicide resulted in judicial and medical guidelines outlining the circumstances in which such acts would be acceptable in the Netherlands. In the Postma case, a doctor was found guilty of giving her 79 year-old mother a lethal injection after rep