Early Days
The Event:
In 1985, Mr J.C., (false initials) was a 43 year old Canadian business man, who had been on dialysis for 3 years. During most of this time he was on a waiting list for cadaver kidney transplantation. He found the dialysis life seriously frustrating so he decided he would try something different. He advertised in a national newspaper that he would give $10,000 dollars to any healthy person who would give him a kidney. The story was picked up by the national media and within a few days he had made contact with about 200 potential donors.
What he had proposed was actually against Canadian law. "Fine, then, but I totally disagree with the idea that I cannot buy a kidney if another person wishes to sell me one. It is a free society, isn't it? I see it as just another paternalistic denial of basic human rights all round, and had no intention to lead anyone into a false situation or legal compromise. But I will now ask for someone to give me a kidney out of love! Would that suit you, eh?" The physician said, "No, even that is no good. We would not do a potential 'mutilating operation' to remove a kidney from someone whom you did not previously know or who did not know you. Our policy is to use kidneys from living donors only if they are family members or have a strong emotional attachment - what we call genetic or emotional ties." Mr J.C.'s level of indignation rose another notch. "And who, pray tell me, gave you the right to make the rules by which my life has now to be lived? I suppose this is just another example of the arrogance which you doctors show towards those who challenge your control of things ...!"
There the matter rested for a while. He then presented a list of six persons, from across Canada, who were prepared to give him a kidney out of love. Each had written a clear expression of intent, with statements that they knew what they were doing, that no money would be accepted, and they had no ill health nor, specifically, any mental problems such as depression.. J.C. now challenged the physicians to declare to each of these six potential donors why their wish to give a kidney would not be honoured, and to give those reasons in writing.
The renal transplant team had much discussion over this impasse and a new policy was hammered out. Unrelated living donors would be accepted, even in the absence of genetic or emotional ties, if the potential donor agreed to:
a) an initial physical and psychiatric assessment which would be repeated six months later; and
b) if a potential donor had a spouse, a letter of agreement from the spouse was asked for (but not made a binding condition).
L.C. still said that this policy was an attempt to make things difficult for potential donors, all of whom lived in other parts of Canada, and who would have to pay for the whole process. Nevertheless, he agreed. Several potential donors had an initial assessment.
L.C., in fact, received a well-matched cadaver kidney 5 ½ months later. He did well post-operatively. Another dialysis patient was overheard to say, "... one way to jump the line, huh?"
I then resolved to change career into Health Ethics and it evolved through various stages (after deciding that I would a) apply for 6 moths sabbatical leave, granted by Dean Douglas Wilson, and b) resign from the Divisional of Nephrology and Immunology). The following is an account of evolution through various developmental stages, namely: 1) The Innominate Committee, (1985) which led to the 2) The Joint Faculties Bioethics Project (JFBP) in 1986 under Dean Douglas Wilson., then 3) The Health Ethics Centre in 1990 or 1991 (I think) and then renamed 4) The John Dossetor Health Ethics Centre, in 1997 (I think) under Dean Lorne Tyrrell.
The Innominate Committee:
This was a group of people whom I knew would help in debating the ethics of patients' decision-making -- which seemed to be a real dilemma for those facing the end of life decisions of advanced renal failure and the choice of dialysis and or transplantation. This was coupled with the fact that it seemed to many care-givers (nurses and family members, as well as physicians and other advisors) that they, not infrequently, made what seemed to be wrong decisions. The Innominate Committee met and discussed specific individual patient's decisions without trying to influence or change the decision that the patients made with their healthcare professionals. It consisted of:
- Professor Janet Storch, F. of Nursing, (subsequently Dean of Nursing, Calgary, and then moving to University of Victoria
- Donna Smith, Nurse Director, WMHSC
- David Schiff, Pediatrician, WMHSC
- Rev. Doug Cossor, chaplain, Cross Cancer Institute
- Justice Ellen Picard, Faculty of Law, and Director of Health Law Institute
- Glenn Griener, Dept of Philosopy, U. of A.
- And others, variously, at a later date: Rev. Cullene Bryant, Richard Fraser. Q.C., Margaret Shone - all come to mind.
We were also aware of initiatives in other Canadian universities and had contact with most of them, They were:
- Medical Ethics Program, University of Calgary (Dr. T. Douglas Kinsella - now deceased)
- Cardinal Carter Centre for Bioethics, CSB, Toronto (Rev. John Gallagher)
- Centre for Professional and Applied Ethics, U; Manitoba, Winnipeg (Dr. Arthur Schafer)
- Center for Bioethics,, Clinical Research Inst. Montreal, (Dr. David J. Roy)
- Groupe de recherché en ethique medicale, U. Laval (Dr. Guy Durand)
- Institute Ethics and Human Values, London, ON (Dr. Abbyan Lynch)
- McGill Centre (Dr. Margaret Somerville) - not quite sure when that started
In the preparatory few months, before taking 'a Sabbatical in Medical Ethics'. I was in touch with, and later visited, Dr. Raanan Gillan in London, U.K., (editor of the Journal of Medical Ethics), Dr. Kenneth Boyd, in Edinburgh, Scotland, and Ian Kennedy, at Kings College, London, U.K.
From January to June, 1986, I took a sabbatical leave from the U. of Alberta and spent time at
- Clinical Research Institute, Montreal (David Roy and John …) - in January, 1986
- UCSF Medical School, San Francisco, (Albert Jonsen) - February-March
- Hastings Institute, Hastings, New York, (Dr. Daniel Callahan, Strachan Donnelley, and others) -March-June
- Kennedy Institute of Ethics, Georgetown Univ., Washington (Robert Veatch, Ed. Pelligrino)- 2 week course in June, 1986
At the end of this valuable experience, a proposal was submitted to the Dean of Medicine and Dentistry for formation of a Joint Faculties Bioethics Project which was approved even though the nature of the inter-faculty responsibilities and long term funding were left undecided.
The next step was to plan the teaching of medical ethics to medical students, and for this Glenn Griener was invaluable. We also interacted with Rev. Tom Daley of St Joseph's College, U. of A. We developed a series of lectures, insisting that the clinical specialists in the practice of each discipline be the main presenter though each session was then devoted to ethical dilemmas of that particular speciality, which were then discussed in class. This seemed to be successful.
Another early milestone was a meeting on Bioethics arranged with the collaboration of the Hastings Center, N. Y. Indeed, the conference was called the Hastings Center North Conference from May 16-29: 1989, at Chateau Lake Louise. There were 170 registrants, which was very good for an ethics conference. Dr Dan Callahan gave two talks and the rest of the program covered a broad series of ethics issues in Health Care, including its inter-disciplinary nature. They had had a number of joint conferences around the world but this was the best -- so they were generous enough to say after the dust settled!
From the start there was strong interaction with members of the faculties of Nursing (esp. Profs. Janet Kerr, Janet Storch, Vangie Bergum, Wendy Austin), Pharmacy, Rehabilitation Medicine, and Law (esp. the Health Law Institute, Ellen Picard, Profs Gerald Robertson and Tim Caulfield).
Professor Vangie Bergum was the lead in an inter-disciplinary research project - supported generously by Social Sciences and Humanities Research Council of Canada, which resulted in a publication in 2005 from University Publishing Group Inc. (ISBN 1-55572-060-9) entitled "Relational Ethics, The Full Meaning of Respect". [My own account -- "Beyond the Hippocratic Oath" - is more biographical but the sub-title is 'A memoir on the rise of modern Medical Ethics'.]
I moved to Ottawa in 1998 and feel distanced from evolving situations at the University of Alberta - though still proud to be a Professor Emeritus of the F.of M-D.
John B. Dossetor, Emeritus Prof. (Med. & Bioethics, Univ. of A) OC, BM, BCh (Oxon), Ph.D.(McGillO, FACP, FRCP, FRCPS)