QUALITY END-OF-LIFE CARE:
THE RIGHT OF EVERY CANADIAN
Subcommittee to update "Of Life and Death"
FINAL REPORT
Of Life and Death contained 16 appendices, describing the information received by the Committee, either from witnesses or other sources. Update 2000 updates the information that is relevant to the unanimous 1995 recommendations.
A. Palliative Care in Canada - Provincial Update
1. British Columbia Ministry of Health and Minister Responsible for Seniors
Organization
In 1997 responsibility for the direct management of most health services was transferred from the Ministry of Health to 11 Regional Health Boards, 34 Community Health Councils, and 7 Community Health Services Societies (health authorities). Palliative care is among the services planned and delivered regionally and locally.
Palliative care continues to be defined as a core service with continuity of care as a guiding principle regardless of the setting. The health authorities are expected to provide an integrated network of palliative services to clients and their families across a continuum of care: medical, hospital, or community.
Services
Through budgets allocated to the health authorities, the Ministry funds palliative care services, both hospital and community-based, such as home care nursing, home support workers, rehabilitation, and bereavement counselling. The former funding arrangement for the Hospital and Partnership program is now annualized in the health authorities' base funding. All health authorities are currently reviewing their palliative care plans. Communities in British Columbia vary in the range and comprehensiveness of available palliative care services.
As of July 1999 the Ministry provided operating funds for 5 free-standing hospices with 42 beds. Several hospice projects are in the proposal stage, but many rural hospice programs continue to rely on community fund raising.
Post-1995 Initiatives
In 1997 the British Columbia Hospice Palliative Care Association developed a continuum of care model as a blueprint for communities involved in coordination. Health authorities are using this model as the basis for planning.
The 1999 report entitled Continuing Care: Community for Life reviewed continuing care and recommended the removal of financial barriers to care in the community; especially the disincentive for community palliative care caused by the cost of drugs and medical supplies.
2. Alberta Health and Wellness
Organization
Since 1995 the regional health authorities have responsibility for hospitals, continuing care facilities, community health services, and public health programs. They deliver health services in the regions and work with local communities to deliver health services to local residents. There are currently 17 authorities covering the province. All regional health authorities are expected to provide palliative care as a core health service.
Services
Alberta Health and Wellness provides funding for allocation by the regional authorities to programs such as palliative care. Regional authorities make their decisions on the basis of assessments of local needs.
The Edmonton Palliative Care Program, started in June 1995, is the largest in the province, with 56 beds providing long term palliative care for patients unable to be looked after at home but too stable to require admission to the acute palliative care units. These continuing care palliative care beds are distributed among four community hospitals in the city. Its palliative care consultation teams are also available on a 24-hour basis to provide consultation services to patients at home, in acute care facilities, and in emergency rooms. Calgary has organized services slightly differently. Palliative care consultation teams assist with pain and symptom management, and also arrange for movement among suitable care settings. Palliative care services are available though home care, hospitals, and two residential hospices. The free-standing hospices are not funded directly and have daily rates.
In 1997 Alberta Health and Wellness established the Long Term Care Review Advisory Committee to address four priority issues: home care, drug strategies, accommodation policies, and health-related support programs. Palliative care was one of the crosscutting elements considered in this review.
The provincial home care program currently covers palliative care clients beyond the $3000 per month limit imposed on other clients. Some medical supplies are available with minimal or no charge.
Post-1995 Initiatives
Alberta Health and Wellness implemented a Palliative Drug Coverage Program in February 1999. It has an annual budget estimated at $3 million.
The Ministry has developed and funded a guide for caregivers for release in 2000.
Organization
Since 1993, when the district health boards were formed with the authority to provide all health services, Saskatchewan Health works with them to provide an integrated continuum of client centred services. Funding is allocated on the basis of health needs assessments and service planning conducted by the districts. While all of the 32 district health boards aim to provide palliative care, there are still some inconsistencies in services.
Services
Palliative care is provided through home care, long-term care, and acute care services. In districts without designated hospital beds, places in special care homes can be used for end-stage palliative care without the usual user charges. Urban centres like Saskatoon and Regina have large palliative care programs with interdisciplinary teams and 24-hour response teams.
There is strong support for palliative services at home, and these have increased significantly as financial barriers have been reduced or removed. Thus, the provincial drug plan provides drugs without charge to people designated as palliative by physicians or by case management assessments. In addition, the required dietary supplements and all required basic supplies, such as medical dressings, are now available at home or in special care homes, just as in hospitals.
Post-1995 Initiatives
In 1999 the Saskatchewan Palliative Care Association held a conference aimed at increasing physician knowledge of palliative care.
Organization
Since 1997 funding flows from Manitoba Health through 13 regional health authorities that provide a broad range of programs and services along the care continuum. Palliative care in the home and in the hospital is designated as a core category of service for provision by the regional health authorities.
Services
Because there is an expectation that palliative care is provided as a core service, Manitoba Health is working with the regional authorities to develop an accountability measure for service expectations in this area. Since 1999 the Department, through a special palliative care initiative, has targeted funding to all regions to enable them to assess the current status and future needs of palliative care services.
While Winnipeg has the largest palliative care capacity, with 20 beds at the St. Boniface General Hospital and 30 beds at the Riverview Health Centre, acute care beds are available in other hospitals throughout the province. The Winnipeg Regional Health Authority has also received funding to develop 24-hour response teams, specialized home care services, and different ways of remunerating physicians for their palliative care work.
Home care is a well-developed program that is intended to cover palliative care in its comprehensive approach with few limits on eligibility and no user fees. However, Manitoba Health is working with the regional authorities to further enhance home-based palliative care and to reduce financial barriers to drugs and supplies.
There are two free-standing hospices supported by volunteers. These are organized by the Palliative Care Coordinating Network and the Manitoba Hospice Palliative Care Association.
Post-1995 Initiatives
Since 1998, there have been ongoing efforts to establish a new fee structure for physicians who provide palliative care counselling to patients and their families.
Manitoba Health is currently drafting a Palliative Care Policy Framework in conjunction with the regional authorities.
The May 2000 budget has indicated an expansion of Pharmacare to include coverage for palliative drugs.
5. Ontario Ministry of Health and Long-Term Care
Organization
The Ministry of Health and Long-Term Care retains the responsibility for palliative care services provided in hospitals, in long-term care facilities, and in the community by varied service providers.
Services
In hospitals, interdisciplinary teams provide palliative care in special units or on an outreach basis. Access to specialized in-hospital palliative care beds was considered by the Health Services Restructuring Commission. It recommended that 0.41 beds per 1000 population (75 years and over) be identified for palliative care from the 8.23 beds per 1000 population for continuing care beds.
In the community, visiting professional health care and homemaking services are provided through 43 Community Care Access Centres. The CCACs are responsible for arranging home nursing care, professional therapies, and homemaking services. They also manage the process for admission to long-term care facilities. In addition, there are 86 community hospice organizations across the province, most supported by voluntary service organizations.
The Ministry funds training sessions for staff of nursing homes, homes for the aged, Community Care Access Centres and other community service organizations and for physicians. In addition, it funds a Volunteer Visiting Hospice Initiative for hospice organizations to train and supervise volunteer visiting services and bereavement counselling services in the community.
The Ministry funds several supportive housing programs for people with HIV/AIDS. Access to personal support and homemaking services is available on a 24-hour per day basis.
The Ministry funds the salaries and administrative costs of local coordinators of pain and symptom management teams. They are employed by services agencies like the Victorian Order of Nurses. They coordinate a list of volunteers who have expertise on pain control.
Post-1995 Initiatives
In April 1999, the Ministry began a two-year pilot project to fund physicians to provide in-home services through an arrangement other than fee-for-service. The care model is to be evaluated from the perspective of patients, families and service providers.
6. Quebec Ministry of Health and Social Services
Organization
The 18 regional boards established by the province continue to plan, organize, coordinate, and ultimately allocate resources to health and social programs and services according to particular needs and priorities. Palliative care, like other types of care, is provided on the basis of needs assessment and other factors.
Services
Within each region, hospitals are organized to provide acute palliative care from their global budgets. Some larger hospitals in urban areas have designated palliative care beds, day care units, multidisciplinary teams of nurses, occupational therapists, physiotherapists, social workers, pastoral services, psychologist, psychiatrist, dietician, and volunteers, as well as bereavement counselling. In the non-urban areas of the province, the provision of this range of services is difficult.
The local community service centres (CLSC) coordinate community and home based palliative care. After referral from a physician or designated health care professional, a CLSC can evaluate individual palliative care requirements and either provide the services or refer the individual to an appropriate agency. For example, the CLSC can arrange for home care nursing, homemaker services, medical and psycho-social counselling, and nutritional counselling. In larger centres it may have a palliative care team including nurses, social worker, physiotherapist, nutritionist, and respiratory expertise. It can ensure that help is available for assistance with daily living and for family support. It can organize the provision of materials, equipment, and some drugs.
The centres for residential and long-term care also have palliative care services. Supplies and medication are usually provided through the provincial insurance plan.
Post-1995 Initiatives
In May 2000, at its annual congress, the Quebec Palliative Care Association released a report on the state of end-of-life care in the province. This work was funded by the province and will now lead to the development of a working group to establish a comprehensive provincial policy on palliative care.
7. New Brunswick Health and Wellness
Organization
In 1996 the administration of the Extra-Mural Hospital Corporation (EMH) was transferred to the eight Regional Hospital Corporations. Since that time, there have been some adjustments as hospital standards and EMH standards and programs have overlapped but the impact on palliative care services has been minimal.
Services
Most hospitals still have designated palliative care beds and services. Hospice programs that provide volunteer and counselling support are also available.
The Extra-Mural Program is well developed for provision of palliative care and continues to provide services in people's homes, as well as in other locations outside the formal institutional setting of a hospital. There are about 30 sites for service delivery located throughout the province. The program is financially accessible and provides access to multidisciplinary care with no limits on visits after assessment of needs. If there is no insurance coverage, palliative care drugs and supplies are provided without financial restrictions. The families of dying patients are also viewed as clients.
Post-1995 Initiatives
In 2000, reorganization of the departments covering health and social services brought changes for the shared homemaker services. Although the budget is limited, it is expected that palliative care clients at home will continue to be a priority.
8. Nova Scotia Department of Health
Organization
In 1994 regionalization in Nova Scotia was implemented and the Central, Eastern, Northern, and Western Regional Health Boards were created. Joint planning from 1996 to 1997 resulted in the transfer of responsibility for hospitals and public health services from the health department to the Regional Health Boards. Long-term care remains the responsibility of the Department of Health. In 2000 the four regions will be further divided into nine health districts to encourage more community participation.
Services
The regions often have designated units and dedicated palliative care nursing programs to provide acute care services for palliative care, but the largest palliative care programs are in Halifax and Sydney. In Halifax, the Queen Elizabeth II Health Sciences Centre offers a six-bed inpatient unit, in-hospital consultation services, clinic follow-up of ambulatory patients, home consultation services, and bereavement support. In Sydney, the Cape Breton Health Care Complex also has a mobile consultation team available to nursing homes and private homes.
Nova Scotia has made palliative care one of its priority areas for development. In 1998 a task force presented 39 recommendations on an integrated model of palliative care to the Department of Health. The focus of the recommendations was that palliative services should be available to clients in all settings, and that palliative consultation teams of physicians, nurses, social workers, and pharmacists be available to patients and primary care providers in acute care, home care, and long-term care.
Palliative care as part of continuing care remains a problem. Palliative care services through hospices that are primarily staffed by volunteers are scattered through the province. The 1998 provincial consultation involved multiple stakeholders who noted that the high level of palliative care offered in nursing homes needs to be more integrated with acute and home care.
There have been several changes affecting health professionals. Sessional fees for palliative care consultation physicians promote greater accessibility to physicians in all sectors. Palliative care at Dalhousie Medical School and the schools of nursing at Dalhousie and St. Martina's is integrated throughout the entire program.
Post-1995 Initiatives
A collaborative demonstration project funded through the federal Health Transition Fund and organized between Nova Scotia and Prince Edward Island is addressing palliative services in rural settings. In particular, it is looking at the needs of formal and informal caregivers in rural areas.
In 2000 the Working Group examining the issue of deaths at home released a brochure entitled "Expected Death in the Home," and will also release a booklet on preparing for unexpected death at home. This document, prepared in cooperation with the RCMP and other emergency response personnel, will provide advice to families and communities on issues to be addressed at end-of-life.
9. Prince Edward Island Health and Social Services
Organization
The Department of Health and Social Services works with five Regional Health Authorities to establish the overall goals and objectives for the system, develop policies, and allocate funding to services including palliative care.
Services
Palliative care services are offered through acute care, long-term care, and home care. Hospice Associations provide volunteer support. There is an eight-bed inpatient palliative care unit at Prince Edward Home, a continuing care facility, with services provided by physicians with palliative care training. Most of the seven hospitals have designated beds and most of the five regions have multidisciplinary palliative care committees.
A 1997 review of hospice palliative care identified some limitations and gaps: inconsistent and fragmented services across the province; limited accessibility as most resources are in the Queens Region; limited availability of after-hours support; less than optimal knowledge and skills about hospice palliative care practice; and the need for greater integration of formal and informal palliative care supports.
A Provincial Palliative Care Advisory Committee has recently been established to respond to this report by developing an implementation plan and by facilitating information sharing with respect to initiatives related to palliative care.
Post-1995 Initiatives
The PEI/NS Rural Palliative Care Project, funded through the Health Transition Fund, is examining a model of rural home care in East Prince Health Region and Southern Kings Health Region. A key component involves support and education for those providing palliative care. It will develop, implement, and evaluate an overall education curriculum and program for physicians, nurses, pharmacists, and others on the rural primary care team. This is scheduled for completion in late 2000.
A family and patient resource manual entitled "Caring for a Loved One at Home" has been developed.
A federally funded Tele-Home Care Technology Project in the West Prince Health Region will enable a dying person and their family to have live visual and audio contact with health professionals up to 24-hours per day.
A policy regarding "Pronouncement of Death in the Home for an Unexpected" Death has been developed in cooperation with the Island Hospice Association.
10. Newfoundland and Labrador Department of Health and Community Services
Organization
Since 1994 the delivery of institutional and community health services has been provided under thirteen regional governance structures and one provincial board for cancer care, the Newfoundland Cancer Treatment and Research Foundation. The intent was to have two health authorities in each region, one for institutions and one for the community.
Services
The six Regional Institutional Boards can offer palliative care through beds located in institutional settings such as acute care or long-term care centres. On April 1, 1998 the mandate of the four Health and Community Services Boards and two Integrated Health Boards was broadened. They now receive global funding for palliative care in the community from the Department of Health and Community Services.
The Health Care Corporation of St. Johns has the most extensive palliative care program. It includes an eight-bed in-patient palliative care unit as well as comprehensive consultative service encompassing institutional and community care for pain and symptom. Other Regional Institutional Boards have limited access to palliative care beds.
The Newfoundland Cancer Treatment and Research Foundation also has a palliative care service which conducts outpatient pain and symptom management clinics. Along with the Health Care Corporation of St. Johns, it is a provincial resource on palliative care, providing referrals, liaison, and educational services as required.
Physician education and training in palliative care is provided through three designated days in the undergraduate medical curriculum at Memorial University, a one month rotation for Family Practice Residents at the Health Care Corporation in St John's, and some time for Family Practice Residents at the Newfoundland Cancer Treatment and Research Foundation. For other professionals, the Provincial Palliative Care Committee supports various educational initiatives including an annual conference.
Post-1995 Initiatives
The Department, in consultation with regional representatives, is currently conducting a provincial survey and national scan on palliative care issues. This will be followed by the development of a Provincial Framework for Palliative Care Services, including standards of care, policies and protocols.
B. Major Canadian Developments and Events in End-of-Life Health Care Since 1995
April 1999 - A new, one-year post-graduate program of added competence in palliative care was jointly accredited by the College of Family Physicians of Canada and the Royal College of Physicians and Surgeons of Canada. By February 2000, 7 of the 16 medical colleges had applied for the new program.
1999 - The Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association, and Catholic Health Association approved the Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care. Among other issues, this addresses decisions about initiating, continuing, withholding, or withdrawing care or treatment.
September 1998 - All health ministers identified continuing care, which encompasses palliative care within home, community, and institutionalized long-term care, as one priority for collaborative action. This commitment was reaffirmed in 1999.
Spring 1998 - The National Advisory Council on Aging, a federal order-in-council body, devoted an issue of its newsletter, Expression, to the theme of palliative care and seniors.
1998 - The Canadian Palliative Care Association, with funding from the Canadian Breast Cancer Initiative, achieved consensus on 70 percent of the national guidelines and standards for end-of-life care. This process continues the update of the 1989 "Guidelines for Establishing Standards, Palliative Care Services," originally produced by the federal health department's Subcommittee on Institutional Programs.
March 1997 - Health Canada supported a symposium on palliative care with provincial and territorial participants. The subsequent report is titled Proceedings of the Invitational Symposium on Palliative Care: Provincial and Territorial Trends and Issues in Community-Based Programming.
February 1997 - The federal budget announced the Health Transition Fund of $150 million over three years. This initiative supported several home-based palliative care projects in selected provinces.
C. Legislative Proposals Introduced in Parliament in Response to the Unanimous Recommendations
Bill S-13 |
Senator Carstairs |
Bill S-29 |
Senator Lavoie-Roux |
Bill S-2 |
Senator Carstairs |
D. Citations for Advance Directives Legislation in Canada
In the past five years three provinces -- Alberta, Saskatchewan and Newfoundland -- have passed and brought into force new legislation; the Yukon and Ontario have significantly amended their legislation; British Columbia has proclaimed its 1993 legislation; and Prince Edward Island has passed legislation which is not yet in force.
British Columbia |
Representation Agreement Act, R.S.B.C.
1996, c. 405 |
Alberta |
Personal Directives Act, S.A. 1996, c. P-4.03 |
Saskatchewan |
The Health Care Directives and Substitute Health Care Decision Makers Act, S.S. 1997, c. H-0.001 |
Manitoba |
Health Care Directives Act, C.C.S.M. c.H27 |
Ontario |
Substitute Decisions Act, 1992,
S.O. 1992, c.30 |
Quebec |
Arts. 10-25, Quebec Civil Code |
New Brunswick |
No legislation, but the Department of Justice is apparently developing attorney for personal care legislation. |
Nova Scotia |
Medical Consent Act, R.S.N.S. 1989, c. 279 |
Prince Edward Island |
Consent to Treatment and Health Care Directives Act, S.P.E.I. 1996, c. 10. Not yet in force. |
Newfoundland |
Advance Health Care Directives Act, S.N. 1995, c. A-4.1 |
Yukon |
Health Act, S.Y. 1989-90, c. 36, s. 45; as amended by S.Y. 1995, c. 8, ss. 19 & 20 |
Northwest Territories |
No legislation |
Nunavut |
No legislation |
E. Sources for Sample Directives
The University of Toronto Joint Centre for Bioethics has a living will form on its website, together with useful information about living wills, their legality in the various provinces, and the factors that should be taken into consideration when constructing either a proxy or instructive direction. See the Joint Centre for Bioethics home page at: http://www.utoronto.ca/jcb.
A. WITNESSES APPEARING BEFORE THE SUBCOMMITTEE
Witnesses | Issue No. | Date |
Alberta Life Foundation Calgary, Alberta ð Mr. James Mahony |
6
|
March 20, 2000
|
Alliance for Life Ontario Guelph, Ontario ð Ms. Jacki Jeffs, Executive Director. |
6
|
March 20, 2000
|
Barreau du Québec Montreal, Québec ð Me Suzanne Vadboncoeur, Director, Research and legislation Division; ð Me Edith Deleury, Professor, Université Laval; ð Me Jean-Pierre Ménard. |
7
|
March 21, 2000
|
Campaign Life Coalition Ottawa, Ontario ð Mr. Peter Ryan, Director (New Brunswick). |
6
|
March 20, 2000
|
Canadian Healthcare Association Ottawa, Ontario ð Sharon Sholzberg-Gray, President and CEO |
3 |
February 22, 2000
|
Canadian Medical Association Ottawa, Ontario ð Dr. Gordon L. Crelinsten, Chair, Committee on Ethics |
3
|
February 22, 2000
|
Canadian Nurses Association Ottawa, Ontario ð Sharon Nield, Manager, Nursing Policy and Regulatory Support |
3
|
February 22, 2000
|
Canadian Palliative Care Association Ottawa, Ontario and the Association québécoise de soins palliatifs Montréal, Québec ð Dr. Bernard Lapointe, President |
2
|
February 15, 2000
|
Canadian Pharmacists Association Ottawa, Ontario ð Mr. Jeff Poston, Executive Director |
3
|
February 22, 2000
|
Care in Dying Ottawa, Ontario ð Mr. Mark Cameron, coordinator ð Dr. Joseph Ayoub, oncologist, Institut du cancer de Montréal |
6
|
March 20, 2000
|
Catholic Health Association of Canada Ottawa, Ontario ð Sister Annette Noël, Vice Chair, Board of Directors ð Dr. Elizabeth Latimer, Professor, Dept. of Family Medicine, McMaster University ð Dr. Richard Haughian, President |
7
|
March 21, 2000
|
Prof. Harvey Max Chochinov Winnipeg, Manitoba University of Manitoba |
4
|
February 28, 2000
|
College of Family Physicians of Canada Mississauga, Ontario ð Dr. Richard MacLachlan, Head |
2
|
February 15, 2000
|
Council of Canadians with Disabilities Winnipeg, Manitoba ð Mr. Hugh Scher, Chair, Human Rights Committee. |
6
|
March 20, 2000
|
Council on Ageing of Ottawa-Carleton Ottawa, Ontario ð Prof. David Bernhardt, President; ð Marian Chapman, Chair "Of Life and Death" Update Task Force. |
5
|
February 29, 2000
|
Department of Health Canada Ottawa, Ontario ð The Honourable Allan Rock, P.C., M.P., Minister of Health; ð Cliff Halliwell, Director General, Applied Research and Analysis Directorate, Information, Analysis and Connectivity Branch; ð Barbara Ouellet, Director of Home Care and Pharmaceuticals, Health Care Directorate, Policy and Consultation Branch; ð Dr. Christina Mills, Director, Cancer Bureau, Laboratory Centre for Disease Control Health Protection Branch |
10
|
May 15, 2000
|
Department of Health Canada Ottawa, Ontario ð Barbara Ouellet, Director ð Nancy Garrard, Director, Division of Aging and Seniors, Health Promotion and Programs Branch ð Dr. Christina Mills, Director, Cancer Bureau, Laboratory Centre for Disease Control, Health Protection Branch; ð Leslie Gaudette, Section Head, Treatment and Palliation Section, Cancer Control Assessment and Surveillance Division, Cancer Bureau, Laboratory Centre for Disease Control, Health Protection Branch; ð Debra Gillis, Director, Health Programs Support Division, Medical Services Branch; ð Cliff Halliwell, Director General, Applied Research & Analysis Directorate, Information, Analysis and Connectivity Branch |
4
|
February 28, 2000
|
Department of Health Canada Ottawa, Ontario ð Carole Bouchard, Manager, Office of Controlled Substances; ð Dr. Brian Gillespie, Senior Medical Advisor, Bureau of Pharmaceutical Assessment. |
6
|
March 20, 2000
|
Prof. Jocelyn Downie Halifax, Nova Scotia Dalhousie University (Nova Scotia) |
1
|
February 14, 2000
|
Elizabeth Bruyère Centre Ottawa, Ontario ð Maryse Bouvette, nurse, Palliative Care Program ð Dr. Cori Schroder, Palliative Care Program; ð Dr. Ray Viola, Palliative Care Program; ð Diane Hupé, Vice President, Palliative Care Program. |
4
|
February 28, 2000
|
Euthanasia Prevention Coalition of Ontario London, Ontario ð Mr. Alex Schadenberg, Executive Director. |
6
|
March 20, 2000
|
Virginia (Ginny) Jarvis Ottawa, Ontario Palliative Care Nurse Consultant, Ottawa Hospital |
9
|
April 4, 2000
|
Dr. Neil MacDonald Montreal, Québec Centre for Bioethics, Clinical Research Institute of Montreal |
8
|
March 28, 2000
|
Dr. Douglas Martin Toronto, Ontario University of Toronto |
5
|
February 29, 2000
|
Medical Research Council of Canada Ottawa, Ontario ð Dr. Henry Friesen, President |
8
|
March 28, 2000
|
Prof. Brian Mishara Montreal, Québec Department of Psychology, Université du Québec à Montréal |
8
|
March 28, 2000
|
Office of the Chief Coroner of Ontario Toronto, Ontario ð Dr. James G. Young, Chief Coroner |
8
|
March 28, 2000
|
Russel Ogden New Westminster, B.C. |
8 |
March 28, 2000 |
Dr. David Roy Montreal, Québec Clinical Research Institute of Montreal |
9
|
April 4, 2000
|
Royal College of Physicians and Surgeons Ottawa, Ontario ð Dr. Michel Brazeau, Chief Executive Officer ð Dr. Henry Dinsdale, Past Chief Executive Officer |
3
|
February 22, 2000
|
Dr. Peter Singer Toronto, Ontario University of Toronto |
4
|
February 28, 2000
|
Prof. Barney Sneiderman Winnipeg, Manitoba University of Manitoba |
1 | February 14, 2000 |
B. BRIEF SUBMITTED TO THE SUBCOMMITTEE
The following brief was received from an organization that did not appear before the Subcommittee.
Physicians and Scientists for a Healthy World
Nepean, Ontario
C. MATERIALS RECEIVED BY THE SUBCOMMITTEE
Books
Cassel, Christine; and Marilyn Field. Approaching Death, Improving Care at the End of Life, Washington, D.C.: National Academy Press, 1997.
Cassel, Christine and Kathleen Foley. Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine, Millbank Reports, December 1999.
Comité Consultatif National déthique. End of Life, Ending Life, Euthanasia, Paris, France, January 2000.
MacDonald, Neil, editor. Palliative Medicine A Case-Based Manual, Oxford University Press, 1998.
Fisher, Rory; Margaret Ross; and Michael MacLean, editors. A Guide to End-of-Life Care for Seniors, Ottawa: University of Toronto, University of Ottawa, and Health Canada, 2000.
Articles
Bowman, Kerry; Douglas Martin; and Peter Singer. "Quality end-of-life care," Journal of Evaluation in Clinical Practice, 6 (2000) Blackwell Science.
Chochinov; Harvey Max; and Douglas Tataryn, Jennifer Clinch, Deborah Dudgeon. "Will to Live in the Terminally Ill," The Lancet, 354:9181 (September 1999) 816-819.
Ganzini, Linda; Heidi Nelson; Terri Schmidt; Dale Kraemer; Molly Delorit; and Melinda Lee. "Physicians Experiences with the Oregon Death with Dignity Act," The New England Journal of Medicine, 342(8) (February 24, 2000) 557-563.
Goode, Erica. "Terminal Cancer Patients Will to Live is Found to Fluctuate," New York Times, September 4, 1999.
Groenewoud, Johanna; Agnes Van des Heide; Bregje Onwuteaka-Philipsen; Dick Willems; Paul Van der Maas; and Gerrit Van der Wal. "Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands," The New England Journal of Medicine, 342(8) (February 24, 2000) 551-556.
Hoffman, Brian F.. "Advance Directives: Principles, Problems and Solutions for Physicians," Annals, Royal College of Physicians and Surgeons of Canada, 30:3 (April 1997) 169-173.
Hogan, D.B.; C. Patterson; E. Boustcha; P. McGann; J. Morin; K. Rockwood; and D. Strang. "Writing Terminal Educational Objectives for Royal College of Physicians and Surgeons of Canada Accredited Training Programs in Geriatric Medicine," Annals, Royal College of Physicians and Surgeons of Canada, 28:5 (August 1995) 291-296.
Kinsella, Douglas and Marja Verhoef. "Determinants of Canadian Physicians Opinions about Legalized Physician-Assisted Suicide: A National Survey," Annals, Royal College of Physicians and Surgeons of Canada, 32:4 (June 1999) 211-215.
Last, John. "Medicine and Literature: Passion, Compassion, Confusion, and Other Emotions in Stories of Sickness and Healers," Annals, Royal College of Physicians and Surgeons of Canada, 32:8 (December 1999) 449-452.
Latimer, Elizabeth. "Ethical Care at the End of Life," Journal of the American Medical Association, 158(13) (June 1998) 1741-1747.
Latimer, Elizabeth; John McDonald; and John Krauser. "Excerpts from OMA Colloquium on Care of the Dying Patient -- Toward the Provision of Effective Palliative Care in Ontario, Ontario Medical Review, (July/August 1998) 22-28.
MacDonald, Neil. "Summary of Do Not Resuscitate Form for Province of British Columbia," Annals, Royal College of Physicians and Surgeons of Canada, 33:1 (February 2000) 25.
Mishara, Brian. "Synthesis of Research and Evidence on Factors Affecting the Desire of Terminally Ill or Seriously Chronically Ill Persons to Hasten Death," OMEGA: Journal of Death and Dying, 39(1) (1999) 1-70.
Nielsen, Torsten. "Guidelines for Legalized Euthanasia in Canada: A Proposal," Annals, Royal College of Physicians and Surgeons of Canada, 31:7 (October 1998).
"Physician-Assisted Suicide and Euthanasia in Practice", The New England Journal of Medicine, 342(8) (February 2000) 583-584.
Sneiderman, Barney. "The Case of Robert Latimer: A Commentary on Crime and Punishment," Alberta Law Review 37:4 (1999).
Somerville, Margaret. "Guidelines for Legalized Euthanasia in Canada: A Rejection of a Proposal," Annals, Royal College of Physicians and Surgeons of Canada, 32:1 (February 1999) 8-10.
Sullivan, Amy; Katrina Hedberg; and David Fleming. "Legalized Physicians-Assisted Suicide in Oregon The Second Year," The New England Journal of Medicine, 342(8), (February 24, 2000) 598-604.
SUPPORT Principal Investigators. "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients," Journal of the American Medical Association 274(20), (November 22/29 1995) 1591-1598.
Trevor-Deutsch; Burleigh; and Robert F. Nelson. "Refusal of Treatment, Leading to Death: Towards Optimization of Informed Consent," Annals, Royal College of Physicians and Surgeons of Canada, 29:8 (December 1996) 487-489.
Trollope-Kumar, Karen. "Suffering and Healing," Annals, Royal College of Physicians and Surgeons of Canada, 29:8 (December 1996) 485-486.
Young, James. "A Coroners View Regarding the 'Right to Die' Debate," A Coroners View, 425-439.
Government Publications
Canada, Health Canada. Palliative Care: Info Sheet for Seniors, Division of Aging and Seniors.
Canada, National Advisory Council on Aging. Expression, Newsletter of the National Advisory Council on Aging, Vol. 11, Number 3, Spring 1998.
Unpublished Documents
Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association and Catholic Health Association of Canada. "Joint Statement on Resuscitative Interventions" (Update1995), October 1995.
---. "Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care," 1999.
Canadian Palliative Care Association. "Canadian Agenda for Research in Palliative Care," A Report by the National Research Advisory Committee of the Canadian Palliative Care Association, March 31, 1999.
Ogden, Russel. "Non-Physician Assisted Suicide: The Technological Imperative of the Deathing Counterculture."
APPENDIX III: TERMINOLOGY
(Excerpt from the 1995 Report Of Life and Death)
For the purposes of its study the Subcommittee chose to use the same terminology defined in the 1995 Report. The following are the relevant definitions:
"Palliative care" is care aimed at alleviating suffering - physical, emotional, psychosocial, or spiritual - rather than curing. It is concerned with the comfort of the suffering individual.
"Total sedation" is the practice of rendering a person totally unconscious through the administration of drugs without potentially shortening life.
"Treatment aimed at the alleviation of suffering that may shorten life" is the administration of sufficient amounts of drugs to control suffering even though this may shorten life.
"Withholding of life-sustaining treatment" is not starting treatment that has the potential to sustain the life of a patient.
"Withdrawal of life-sustaining treatment" is stopping treatment that has the potential to sustain the life of a patient.
"Advance directive", referred to as mandate in the Quebec Civil Code, and also commonly known as a living will, is a document executed by a competent individual concerning health care decisions to be made in the event that the individual becomes incompetent to make such decisions. Advance directives can be divided into two categories - instruction directives and proxy directives. The latter are also known as durable powers of attorney for health care. In an instruction directive, an individual sets out what or how health care decisions are to be made in the event that he or she becomes incompetent. In a proxy directive, an individual sets out who is to make health care decisions in the event that he or she becomes incompetent. A valid advance directive is one completed according to the requirements set out in the relevant legislation. Throughout this Report, when the expression advance directive is used, validity is assumed unless otherwise indicated.
"Futile Treatment" is treatment that in the opinion of the health care team will be completely ineffective. This term does not include treatment that may be effective but whose results are deemed undesirable.
"Free and informed consent" means the voluntary agreement by a person who in the possession and exercise of sufficient mental capacity, as defined by an appropriate medical professional, makes an intelligent choice as to treatment options. It supposes knowledge about the consequences of having or not having the treatment and about possible alternatives. The consent must be free from coercion, duress and mistake.