C anadian Physicians for Life - Palliative Care Discussion Board
May 2000 - Testimony at recent Senate Subcommittee hearings to update " Of Life and Death " confirmed the urgent need for improved end-of-life care in Canada. This bulletin board is intended to promote discussion, and especially to seek solutions and input for effective legislation, on the topic of palliative care.
Dr. H. Robert C. Pankratz
Abbotsford, BC - President, Canadian Physicians for Life
In the current battle against physician assisted death or euthanasia of any kind there are many approaches to take. I believe that the most eloquent answer to the current push for death on demand is the Hospice movement and the understanding and availability of excellent Palliative care. The general population seems woefully under informed about the ability of modern medicine to alleviate symptoms in the last days of life. People are also confused as to the difference between mercy killing and letting someone go when the time is appropriate. As we counter the arguments of the protagonists of euthanasia, revealing the truth, if we don't also show how "warm science" can overcome the pain and fears of dying, we will not win over the hearts and minds of the very people we wish to rescue. It is my vision to have a Hospice volunteer and a Physician well trained in Palliative care at every deathbed.
Physicians need to play an active role in informing patients and the general public that no one needs mercy killing and no one need die abandoned or miserable. Our society needs to embrace the alternative of true compassionate care -- compassion literally meaning "to suffer along with". Only then will our society become truly humane.
We are developing a series of hyperlinks and resources to help us all be better informed. A short summary of anti-euthanasia arguments is available from CPL entitled "Refuting the Rhetoric".
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Dr. Peter Singer
Toronto, ON - University of Toronto Centre for Bioethics
In addition to pulling end-of-life care together as a single concept, we need to move beyond understanding to some improvement strategies, linked closely to the idea of organizational and health systems' accountability and performance. Those are the things that will ultimately drive the system towards quality end-of-life care.
If I am trying to teach a group of medical students or residents how to approach a dying patient who is in front of us, I can talk about advanced directives, I can talk about life-sustaining treatments, I can talk about pain, but those are little pieces of the puzzle, and they still do not have a comprehensive way to think about it, like they have a comprehensive way to think about heart failure.
What we need to do is to step back and ask what our goal is here. Our goal is to ensure that the patient in front of us receives quality end-of-life care. We do not want to think about dealing with the access issue only as an issue of increased specialist services but, rather, we also want to build the skills of front-line doctors and nurses who are caring for those 222,000 people who die annually in Canada, their own core competencies in end of life. Every practicing physician or nurse who deals with dying people, while not a palliative care expert specialist certified by their college, should have the same level of core skills in end-of-life care as they do in treating people with health care or any other problem.
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Dr. Margaret Cottle
Vancouver, BC - Palliative care physician
At a recent meeting of Christian physicians, dentists, and spouses jointly sponsored by The Christian Medical and Dental Society of Canada and Focus on the Family (Canada) held at Harrison Hot Springs, B.C., we had a well-attended group meeting which began to address some of these issues pertaining to end of life care. Some suggest that we need to propose "pro-active" legislation in order to establish access to quality Palliative Care as a standard part of basic medical care. There are several forms that such guidelines could take including both ends of the spectrum from very general to extremely specific. We hope this discussion group will explore some of these different forms and see if we can come to some sort of broad consensus on some recommendations we might make to our parliamentarians. Please join in adding your comments and suggestions! Thank you in advance for taking the time to contribute to this important initiative! Blessings, Margaret Cottle, M.D.
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Raymond Viola
MD, MSc, CCFP- Acting Director, University of Ottawa Institute of Palliative Care
Health care progresses and improves because research and evaluation occur. When these do not occur, health care languishes and becomes irrelevant to the population it serves. Research may be simple, such as clinical observation and documentation, or it may be quite elaborate, such as multi-centre randomized control trials.
For continuing progress to occur in the care of the dying and their families, there is now a need to carry out a much larger volume of research and to plan studies that provide valid, reliable, and generalizable evidence pertinent to the care of the dying. There is a need for this research to be done in Canada so that it can be applicable to the Canadian health care system and to society. Along the same lines, programs also need to participate in high quality evaluation processes for the services they provide.
Obstacles to palliative care research are numerous and include the belief that research with dying persons and their families cannot be done; ethical concerns that such research should not be done; the lack of adequate, specific funding for research in palliative care; the lack of trained researchers in the field; limited access by researchers to enough dying persons to carry out the studies; and the lack of relevant, practical and validated outcome measures.
Research with and for dying persons can and should be done. Otherwise, we will never know how to improve the care of the dying and their families and how best to address the complexities and the interactions between the physical, psychological, social, and spiritual aspects of suffering.
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Dr. Harvey Chochinov
Department of Psychiatry, University of Manitoba
Much of the discussions during Senate committee hearings talked about the hurdles and difficulties euthanasia and assisted suicide create in this discussion, and about it being one of the impediments to moving the palliative care agenda forward. There are two others which we have not discussed. The first is, perhaps, a lack of political will. Unfortunately, in end-of-life care, we do not have a vocal constituency. The dead are no longer here to speak, the dying often cannot speak, and the bereaved are often too overcome by their loss to speak. That is a problem.
The second issue is that of funding and funding for research. Research funding is necessary to generate knowledge, and knowledge defines the ceiling. The level of care can only rise as high as that ceiling. Let there be no confusion. There was some discussion wherein we were told there was not enough funding and then later on that, perhaps, there was enough funding. I will be the tie breaker: There is insufficient funding for end-of-life care research.
End-of-life care issues, even the most seemingly difficult of issues, can be studied and addressed in an objective fashion. Palliative care research on a broad range of issues is desperately needed if we are to avoid care that is guided either by ignorance or desperation. Quality end-of-life care research provides the knowledge upon which clinicians can base their decision-making, enabling palliative interventions that are sensitive to the needs of dying patients and their families.
Many of the studies that have been done thus far have looked at trying to determine what is the extent of the problem. What is lacking in the area of research, and what very much needs to be moved into, is the whole area of interventional research. At this point in time, there are no randomized, controlled trials of anti-depressants among the terminally ill. There are a few smaller trials that have shown them to be efficacious, but a good, randomized, controlled trial is yet to be done. We still have a long way to go in doing the proper intervention trials.
That is probably true in palliative care in general. The focus in the literature has been to try to define the scope of the problem, whether in terms of symptom management or the extent of existential suffering, and so on. What is lacking is research into the domain of interventions.
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