The father of palliative care in Canada, physician Balfour Mount on the legacy of Cicely Saunders, the start of palliative care, and the true meaning of medical aid in dying
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鈥淭he suffering of people at the end of life has been enough to legalize euthanasia and physician-assisted suicide but interestingly, not enough to mandate excellence in palliative care for all Canadians. This is an ongoing need and in my view, a tragedy.鈥�
By Devon Phillips. Balfour Mount, deeply committed to palliative care, has been instrumental in in the establishment of palliative care services, research and teaching in Canada. He is the founding Director of the Royal Victoria Hospital Palliative Care Service, Palliative Care 平特五不中, and the 平特五不中 Programs in Integrated Whole Person Care. Dr. Mount is the Eric M. Flanders Emeritus Professor of Palliative Care at 平特五不中.听 In 1985, he was made a Member of the Order of Canada in recognition of 鈥渉aving founded the first Palliative Care Service at Montreal's Royal Victoria Hospital." In 2003, he was promoted to Officer in recognition of being "the father of palliative care in North America." In 1988, he was made an Officer of the National Order of Quebec. I met with Bal in his home in Montreal, Quebec, where he surrounds himself with books, art, music and his beloved dogs.
Q: What does being the founding father of palliative care mean to you?
A: I have been writing a book for a number of years and just this morning I wrote about Cicely Saunders鈥� death. What it means to me is having had the privilege of being a devoted disciple of Saint Cicely. I called her that once in a meeting and she came up to me afterward and said, 鈥淥h incidentally, if you ever call me Saint Cicely again in public, I shall kill you!鈥� She was wonderful! I think the international community owes her a great deal for having transformed healthcare around the world. I am so grateful to have known her.
Q: When did you first meet Cicely Saunders?
A: I remember the millisecond! I heard of St. Christopher鈥檚 Hospice in London through the Elizabeth Kubler-Ross book, 鈥淥n Death and Dying鈥�, published in 1970. We had done our study at the Royal Victoria Hospital and I knew we had a problem. 听In my report to the Board at the Vic, I wanted to make some suggestions on how care could be improved, so I phoned Dr. Saunders at St. Christopher鈥檚 Hospice. After telling her who I was, I said, 鈥淐ould I come for a visit?鈥� And she said, 鈥淚 could not possibly consider that now, I am on my way to lunch. Call me in an hour!鈥� Click! So I called back and she said, 鈥淚 know you. You want to come to London with your wife, see a few plays, have a quick look around the hospice and go home. Well, I won鈥檛 have it!听 I鈥檒l tell you what, leave your wife at home, be prepared to stay for a week, role your sleeves up and work hard, and I鈥檒l have you.鈥� That鈥檚 when I fell in love with Cicely. I visited in the second week of September 1973. I was deeply impressed by St. Christopher鈥檚, by Cicely, Mary Banes, Terese Vanier, Tom West and the galaxy of superstars she had assembled, including the wonderful nursing staff.
Q: It sounds like Cicely was a very strong character and also a good friend.
A: Both! She was a very strong leader, a clear thinker, discerning, and had a good sense of humour.听 She was insightful, and she knew what she wanted and she got it, but not without a lot of hard work. Her other remarkable advantage was that she started out as a nurse and then became a social worker and then, so that she could fulfill her dream, she went to medical school and became a physician. So she was a one-person team! This gave her a broad experience with the whole person needs of both patient and family. We became very close friends.
Q: What was your first visit to St. Christopher鈥檚 Hospice like?
A: The first morning at St. Christopher鈥檚 I was taken around the wards by Mary Banes. I was blown away by the team, their thoughtfulness, the patients, the building, everything! At tea time that afternoon, I was ushered into a seat across from Cicely鈥檚 desk and she said, 鈥淲hat will you have for tea? Sherry or scotch? I am having scotch!鈥� I had sherry. I sat there across the desk from this towering figure and wondered what I should call her, so I said, 鈥淲hat do people call you? She stiffened, and said, 鈥淢y friends call me Cicely. Others call me Dr. Saunders.鈥� And I was wondering, 鈥淲hich category am I in?鈥� She said, 鈥淪teady boy, I said my friends call me Cicely. you may call me Dr. Saunders.鈥澨� So, having been put in my place, I rolled up my sleeves and spent a wonderful week at St Christopher鈥檚. By the end of that week, I really understood what they were about, what they were doing and why they were doing it. I had met all the key players and taken part in the care. As I was going out the door, she said, 鈥淥h incidentally, you may call me Cicely.鈥� During the following decades, we kept up a close relationship, through visits here and there, and all over the world at meetings, and through continual letters and phone calls and emails.
Q: How did you transplant what you learned at St. Christopher鈥檚 in London to the Royal Victoria Hospital in Montreal?
A: While I realized there was a better way to provide end-of-life care, I also realized that for the 80% of Canadians who die in institutions, we could not afford a sufficient number of first-rate hospices to serve our population. So I made a proposal for a program at the Vic and the Board agreed to a 2-year pilot project. That鈥檚 the short version of a much longer story! The pilot project was 1975-1976.听The service consisted of a home care program that cared for about 100 patients in the community daily, an inpatient ward, a consultation service to the active treatment programs, a bereavement follow-up team to follow families judged at higher risk for bereavement problems, as well as research and teaching. So it was a comprehensive service.
Q: Was the Vic ahead of its time in accepting this pilot project?
A: Yes. The RVH PCS was a first, much to the credit of the Vic administration. At the time, the Vic was one of the foremost teaching hospitals in Canada, and was short of both budget and beds, so for them to agree to this pilot project was quite exceptional. The other thing that was new was calling it a 鈥淧alliative Care Service鈥� because that term had not been used before. My francophone colleagues said that we could not use the term 鈥渉ospice鈥� because in France the word had a pejorative connotation that suggested a dumping ground of mediocrity of care, signifying the worst of nursing homes.
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Q: How did you come up the term 鈥減alliative care鈥�?
A: I was having a shower one day and I thought, 鈥淲hat are our goals and how can they be conveyed? The answer was 鈥減alliative care鈥�. The etymology of the word was perfect. It means 鈥渢o improve the quality of鈥�. I ran it by past Cicely and Robert Twycross in the UK and neither of them were impressed. So, I got particular pleasure when, a few years later, the Royal College of London and Edinburgh chose the term 鈥淧alliative Medicine鈥� as its new specialty.
Q: What was Cicely Saunder鈥檚 most important contribution to end-of-life care?
A: Her most significant contribution was the concept of听鈥渢otal pain鈥�, based on her observation that suffering may be related to the pathophysiology of the disease, it is always modified by the psychosocial, existential and spiritual aspects of suffering. This was a major breakthrough. In terms of the control of pain, one needed to consider each of those domains, and if you did, you could almost always get total pain control. Also important was her observation that the patient and family need to be considered together as the unit of care. 听These are Cicely鈥檚 enduring contributions; so much flows from them.
This thinking was and still is revolutionary in the healthcare system a half century after Cicely wrote about it because it is still the case that Western healthcare is aimed at four things: investigating, diagnosing, prolonging life and curing.听 The kind of care defined by her fundamental goals is not even thought of in our healthcare system. Too frequently it isn鈥檛 considered in Quebec because of shrinking budgets that demand that family doctors have only a few minutes to see a new patient. It鈥檚 crazy.
Q: In picking up the torch from Cicely, you had to create a new environment at the Vic and fight for what you needed. 听What was that process like?
A: It was very challenging,听but we had strong support from key individuals. I learned that you don鈥檛 need to convince the world, you need to convince a small number of key individual decision-makers.
Q: What about the other physicians at the RVH at this time?
A: Without physicians Ina Cummings and John Scott, none of this would have happened, partly because I still had my own research programs in urology and a surgical practice. Ina and John were the heart and soul of our program.
Q: John Scott and nurse Sue Britton from the early days of palliative care at the Vic say that you never took no for an answer.
A: If that鈥檚 true 鈥� it must have been my Cicely gene!听 However, I completely deny all stories they may have told you about me!
Q:听 Were there other factors at the Vic PCS that contributed to the Palliative Care model?
A: The pilot project started in 1975 and that allowed us to set up the palliative care service, but by the early 80s, we created Palliative Care 平特五不中 which is a consortium of programs in a number of hospitals. 听So it was not the Vic alone. Palliative Care 平特五不中 is critical to research and teaching.听 We got an additional big boost when Kappy Flanders funded 平特五不中鈥檚 Eric M. Flanders Chair in Palliative Care. The third thing we did was to initiate research and teaching programs known as the 平特五不中 Programs in Whole Person Care. The fourth aspect of the 平特五不中 contribution has been the biennial International Congresses on Palliative Care.
Q: You have explained the demands and rewards in setting up palliative care services and how our healthcare system is currently failing to support the implementation of palliative care in many instances. Now the bill permitting medial aid in dying has been passed. 听What would you say to people who support medical aid in dying?
A: The first thing I would say is that the very name of that intervention, 鈥渕edical aid in dying鈥�, is misleading rhetoric. Medical aid in dying is what I have been doing for 50 years. This bill is not talking about medical aid in dying really, it is not talking about ending the suffering, but instead, ending the sufferer. We are talking about legalizing killing people. We have to be clear what this is. 听I am totally in favour听of medical aid in dying.听 I have spent my professional life working toward that end.听 But, I do not support euthanasia and assisted suicide.
Q: Can you talk about what you mean by medical aid in dying.
A: The chartered accountant that I admitted on the palliative care unit is an example that comes to mind. He came in with his wife. He had advanced cancer. They were lovely, articulate people and a devoted couple with two adult sons. She said, 鈥淚鈥檒l speak for my husband because he has suffered terribly, he is so tired and we really want this to end.鈥� I said, 鈥淚 am glad you are here, give me a few days to get to know what this suffering is about and then let鈥檚 sit down again.鈥� Later that afternoon, after his wife had left the PCU, I went to his bedside for a visit and after chatting for a while said 鈥淵ou know, I don鈥檛 see you as a person who wants to die. I see you as a person who wants to live but without the discomfort you have had鈥�, and then this man in his late 50s started to cry. He said, 鈥淵ou are right but I don鈥檛 want to be a burden to my wife,鈥� to which I responded, 鈥淚t can be a big job to care for people at home, but that鈥檚 why we have a Palliative Care Unit. Your wife and your sons can come in when they feel up to it. You are not a burden for us.听 You are why we are here.鈥� His comfort levels and quality of life were superb within a day or two. There was no more talk about his desire for death. 听There was talk about what interested him and the sources of his quality of life. We had removed his fear of being 鈥渁 burden鈥�. 听Every time I see the words 鈥渕edical aid in dying鈥�, I think of him. Medical aid in dying was what this gentleman received, but it was certainly not euthanasia or assisted suicide.
Q: Where does palliative sedation fit in the discussion of end-of-life care?
A: Palliative sedation means sedation to obtain complete comfort using individually optimized doses of medication.听 It is an available option and does not require new legislation since the goal is, as in all palliative care, optimal quality of life.听 It has been used when there is existential anguish in the presence of life-limiting disease.
Q: How do you respond to people who equate medical aid in dying with freedom of choice or autonomy? What do you find problematic with this way of thinking?
A: In meeting the needs of society, the needs of the whole community and in particular the most vulnerable sometimes trump those of the individual.听 For example, if you have Ebola or another infectious disease, you may be placed in quarantine.听 You don鈥檛 simply say, 鈥淲ell whose life is it anyway?鈥澨� We have the quarantine option and that is a societal right. The rights of the vulnerable trump the rights of the individual. Another concern to keep in mind is the fact that it is cheaper to kill people than to take care of them, so in a society that is budget-stretched and short of beds, euthanasia is one way of saving money. A further important issue is what it does to the physician-patient relationship. Why was it that Hippocrates, with the small therapeutic armamentarium he had available at the time, troubled to make the point that physicians must never willfully shorten a patient鈥檚 life?
Q: Do you have any last thoughts you would like to share about palliative care?
A: An area of enquiry that holds particular potential in our field is the relevance of the inner life or spiritual domain to suffering and quality of life.听 The contribution of the existential domain to our perception of reality is undergoing renewed scrutiny as the interface between 鈥渟cience and religion鈥� shifts in light of the emerging questions posed by quantum physics, with its continual reshaping of our understanding of consciousness and its role in how we perceive reality. While palliative care is relevant throughout life, 鈥渨hole person鈥� research in the-end-of-life setting is likely to offer rich rewards as concepts that are independent of creed and systems of belief, such that consciousness, biocentrism and non-duality are increasingly understood.
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