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Open Letter Calling for a National Right to Palliative Care in Canada
- April 12, 2016
- BakerLaw
To:
The Honourable Justin Trudeau (Prime Minister of Canada)
The Honourable Jody Wilson-Raybould (Minister of Justice and the Attorney General of Canada)
The Honourable Dr. Jane Philpott (Minister of Health)
Dear Ministers:
We are calling on you to include a legislated right to palliative care in your legislative response to Carter v. Canada. In receiving the Special Joint Committee’s report on physician-assisted dying you stated that “It is important that we protect people’s choices and freedoms in a way that makes sure our society protects the most vulnerable.” We agree. Assured access to high quality palliative care should always be one of the choices available to all Canadians as they face avoidable suffering[2].
Canada is a signatory to the World Health Assembly resolution WHA67.19 calling for Strengthening of palliative care as a component of comprehensive care throughout the life course. The resolution acknowledges that “palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care”[3].
The Parliament of Canada passed a motion M-456 on May 28, 2014 to establish a Pan-Canadian Palliative and End-of-life Care Strategy. Despite all-party support for the resolution, access to palliative care has not materially improved. This is why the right to palliative care must be legislated[4].
One way to ensure universal access of palliative care is to list it as a medically necessary service in the Canada Health Act. Alternatively, the right may be included as part of the legislative response to Carter v. Canada as it was in Bill 52, the Quebec Act respecting end of life[5]. The World Health Assembly acknowledged that palliative care must be integrated into the healthcare system to ensure access, writing at page 2 of its resolution: “Realizing the urgent need to include palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care”.
Regardless of how it is accomplished, there must be recognition that access to palliative care should be a fundamental right. The Council of Canadian with Disabilities and the Canadian Association for Community Living are preparing to file a constitutional challenge based on the exclusion of palliative care from the list of medically necessary insured services in the Canada Health Act which results in palliative care being neither reasonably accessible nor available on uniform terms and conditions to all Canadians.
The lack of access to quality palliative care was canvassed in the recent discourse on physician assisted dying. Indeed, research shows that one of the reasons given by those seeking assisted death was lack of alternative treatment and care options. The inadequacy of palliative care services was a factor in Canada’s mediocre ranking among high-income peers in the Quality of Death Index 2015 published by the Economist Intelligence Unit which also found in its review of 80 countries that “National policies are vital for extending access to palliative care”. Canada’s overall ranking was 11th, a drop from 9th five years ago and 18th in palliative care access[6].
In his book Being Mortal, writer and surgeon Atul Gawande writes: “Our ultimate goal, after all, is not a good death but a good life to the very end”. That is the promise of quality palliative care for any Canadian who needs it regardless of circumstance or geography.
Quality of Life is a collaboration of community based organizations who endorse this initiative calling for a legislated right to palliative care.
Respectfully submitted:
Canadian Association for Community Living
Council of Canadian with Disabilities
National Pensioners Federation
Congress of Union Retirees of Canada
Canadian Society of Palliative Care Physicians
Palliative Care medical professionals and ethicists:
- Dr. Eric Wasylenko, MD CCFP BSc MHSc (bioethics); Clinical Lecturer, Division of Palliative Medicine, Department of Oncology, University of Calgary; Clinical Lecturer, John Dossetor Health Ethics Centre, University of Alberta
- Dr Jessica Simon, FRCPC; Associate Professor, Division Head Palliative Medicine, Oncology
- Gary E. Frank, Nurse Consultant Palliative Care
- Jean Fergusson Nurse Consultant Palliative Care
- Dr. Patrick R. Mayo, Clinical Practice Leader – palliative care, pharmacology
- Dr. Linda Fong, MD, FCFP Hospice physician
- Janet M. Vandale, RN Nurse Clinician, Palliative Care Consult Service–Acute Care Foothills Medical Centre
- Lori MacIsaac Clinical Nurse Specialist, Palliative Care Consult Service
- Dr. Amanda Roze des Ordons, MD, FRCPC, MMEd Critical Care Medicine, Palliative Care Clinical Assistant Professor, University of Calgary
- Dr. Vincent Thai Associate Clinical Professor, Palliative Care Medicine Department of Oncology University of Alberta Hospital
- Dr. Tessa Van Rooi, MD CCFP Family doctor
As a Palliative Care Specialist in Canada, I am disappointed at the lack of resources being put into furthering palliative care access to people facing life limiting illness. I specialize in non-cancer palliative care (as I also am an Internal Medicine Specialist). I feel that the resources to: educate patients,families, and health care providers, provide symptom care in the last years of life, provide adequate end of life support, and to support patients in physical, emotional, spiritual and social realms have not been adequately provided by our governing bodies. I am very disappointed in the short sighted allocation of time and resources to PHD (physician hastened death), rather than to improve our country’s palliative care resources.
I am a Clinical Nurse Specialist in Palliative Care, practising in Calgary, Alberta. We are very well resourced here, and able to provide expertise in Palliative Care to people in any setting. Meanwhile, in central Ontario, a relative of mine is dying of age and dementia. In my conversations with family, I have learned that there have been no discussions with family about the fact that he is dying, no planning to ensure a dignified and comfortable death, an inappropriate use of life-prolonging measures that serve no purpose at this stage and only add to his discomfort, and no comfort for a confused and anguished family. My family knew virtually nothing about how palliative care can help. I cringe when I think of what could have been done for my relative to ensure a peaceful death, but the resources were not there for him where he lives. This is why I and my colleagues are endorsing this letter: every Canadian should have the right to – and an access to resources for – quality palliative and end of life care.
As a palliative care nurse consultant practicing in the Alberta South Zone, knowing that access to quality palliative care resources means so much to the patients and families for whom we care. If our government would direct the same kind of dollars to the education and promotion of palliative care as seems to be allocated for P.A.D., more patients and their loved ones could have access to this valuable and compassionate service during a diificult time. By limiting this resource people are effectively being denied to die well, to keep living until the body has come to its natural end. In a developed country like Canada, lack of access to palliative care for all its citizens should instead spur on our government leaders to seek ways to remedy that shame.
I’m 68. My mother died 7 years ago at 89. She was well prepared and had all her legal ducks in a row in advance. I had to submit her legal requests to the ethics committee at Burlington Hosp to have her taken off medication etc and put in palliative care. Still, I hired her at-home caregiver and two helpers to spend all day with her there for each day before she died ( as I was in BC and had already spent a great deal of time with her before she went into the hospital). A nurse in the cardiac ward had called me to tell me what was happening with her veins and what the doctors were attempting, and said ” if she were my mother, I wouldn’t let her go through that”. So out came my mom’s living will, or whatever it was called then. She died peacefully on the day I held a big community garden party at my home. She had said to me, ‘when I die, hold a party’ – and she left her body a half-hour before the party began.
The thing is, she was not afraid to talk openly of death and wishes from the time she was 60 and onward. So what is needed is education, classes, workshops, societies, groups, whatever it takes to get people to open up and face death honestly and openly ahead of time. It’s a great area for the right people to find employment and open various death-related businesses.
In my neck of the woods in BC, my husband and I have just joined the local Burial Society. A small legal cemetary in the forest, a legal-sized hole dug by friends and family while having a digging party, a shroud, a body, badda -boom – dust to dust. Recently, at a digging party, the daughter of the deceased got into the finished hole and took a selfie. Doesn’t mean there isn’t grief. Just means lighten up. We are thinking someone could have a shroud business – knit, tie-died, woven, crocheted, seasonal patterns,- death can be approached with lightheartedness. It needs to be talked about openly. Everywhere. All the time. Billboards. Commercials. Facebook posts. At least my generation will be approaching death with a new attitude.
There should be no medical aid in dying law should exist,without a universal access to high quality palliative care.
As a palliative care physician with,29 years of experience ,I still see the specialty of palliative care is marginalized by the medical community.
Terminal patients are still told that they are “not ready” for palliative care.
Presently in Canada ,dependent on the region, we are still seeing only the tip of the iceberg in dying patients and their families.
We still believe and practice that palliative care is more about life then about death and our multidisciplinary teams should be given the resources to do our compassionate work.
Michael Dworkind MDCM.CCFP.FCFP.