Palliative care physician John Scott on the revolutionary nature of palliative care in the 1970s and the evolution of end-of-life care over the last 40 years
“We were convinced that we had a message that we had to tell the rest of the world. I think physicians were threatened, partly by that enthusiasm. We were going beyond the bounds of being physicians; we were advocates for something that meant big, big change for how we dealt with death and dying.”
By Devon Phillips. John Scott considers himself, along with the others who were shaking up the system in the 1970s, as a warrior of palliative care. And warriors have an abundance of life force. John completed his master’s degree in theology while working as a palliative care physician and heading up Canada’s first palliative care university division. Then, to take a break from the hectic life of academia and clinical medicine, he and his wife had eight children and ran an organic farm. Nine years later, he returned to palliative care with as much passion and commitment as when he first started in 1975. I met with John in his office at the Ottawa Civic Hospital, Ottawa, Ontario.
Q: You have had a lot of “firsts” in your life. You were there when the first palliative care unit opened with Balfour Mount in 1975. What was that like?
A: So I was this really young kid when I first got involved. I was a Toronto graduate who then went to the University of Montreal to do my internship. I wanted to work in a French Canadian place and my friends thought I was crazy. This was 1972, 1973. And after three months I was begging people to let me go to McGill because I was so exhausted. I didn’t know what language I was speaking! And the prof who was with me at the time said I am not going to let you - do you realize you have just said all of that in French!
Back in the summer of 1974, Bal Mount had just been to St Christopher’s Hospice and he decided to develop palliative care. So he approached Ina Cummings and then she turned to me and said, “I think I am going to do this, would you take on my family practice?” So then I got to hear indirectly about this whole palliative care plan. In addition, I was head over heels in love with this young nurse who turned out to be one of the original nurses on the palliative care unit and so I was showing great interest in this new project! But she eventually rejected me. So I was very interested in it but did not think palliative care was for me.
But then in 1975, Bal gave me a call and said, “we need you”. And he tells me, in typical Bal charismatic fashion, that I was the only person they could have. Bal does not mean to exaggerate but in the moment he is right over the top about everything. And at first I said, “absolutely no way. I am not going to do palliative care because I have another plan in mind”, but suddenly it was all shifting. So by early 1975, I was already starting to close down the practice. I went to a 3-week program at Yale which was the only other palliative care program in North America and then I went to St Christopher’s for five weeks in early spring of 1975, all for training purposes, to get ready to come and pretend that we were expert consultants at the Royal Victoria Hospital.
Q: How did Bal recruit you?
A: Bal called me on the phone and he booked me to come in and see him so I said, “okay, I might as well go ahead”. And then he forgot, so when I arrived the secretary did not know I was coming. Again, this was typical of Bal. And then we revealed ourselves to each other very quickly because he was late for the operating room and as soon as I walked in the door, he threw a green outfit at me and told me to put it on. So the two of us undressed in front of each other having never met each other before! So there was nothing hidden at our first meeting. Then I went into the OR with him and as he did the procedure he told me all about this new project.
Q: Do you remember what the procedure was?
A: Yes! And I remember being horrified because the patient was under spinal and could hear everything! But Bal was a typical surgeon so when he was in surgery, he was not sensitive to psychosocial things and he started talking about death and dying. And I was actually hyperventilating because I was so worried that this patient thought Bal was talking about him!
And then Bal took me into a little room and he got an old Kodak slide projector and projected 15 slides of St Christopher’s and he began to tell me why he was so excited by what St Christopher’s was doing. So literally there was a little patch on the wall, we were huddled in this little tiny room and I felt my life was actually being turned upside down. I mean he is a wonderful guy who can convince anyone of anything but that was not it. It was about the message of what he was saying. It was like, click! I think this is what I am supposed to be doing!
Q: What was your role at the Royal Victoria hospital in the 70s?
A: Along with Ina Cummings, we were the two day-to-day physicians doing palliative care. Bal was a full-time surgeon, busy beyond belief with all kinds of stuff. He was the promoter, the salesman, the one who got the money. And he helped with some on-call on the weekends but we did all the clinical work. They were very exciting times. The government had given funding to the Royal Vic and we had two years to prove that this program was worth the extra money. I remember that there wasn’t much money and there was no way to fund me so I actually made $9,300 per year for that year, it was 1975 but still- that was still low salary even then!
I was right into end-of-life care. This was exactly what I wanted to do - something distinctive and new when there were all these taboos about death and dying. I was also very active in the church and the spirituality component was of great interest to me.
Q: So how long were you at the Royal Victoria hospital?
A: Two and half years. I started doing the theology in my spare time on the side and then went to Toronto to finish the theological work. Those two and half years Bal was still a full time surgeon. It was only after I left that he started clinical work. Ina and I used to say, “oh no, don’t let Bal do palliative care work full time. He needs to do surgery!” But we were wrong, he was excellent. I mean his energy and his passion remained the same but his ability to be sensitive and be a very good bedside palliative care doctor really surprised Ina and I.
Q: What does it take to be a really good bedside palliative care doctor?
A: Most palliative care doctors are fairly quiet, soft spoken, but there is a physician I am thinking of who is different- at first when you meet him he is kind of an over-the-top Irish hothead but at the bedside he completely quiets down and really listens deeply and seems to be able to establish rapport quickly with the patient . You have to be peaceful or at least be able to absorb some of the angst of the situation and still do it a way that is healthy and keep going and in fact, be energized by the encounter.
Q: The other “first” is that you established Canada’s first university division of palliative medicine in 1988 at the University of Ottawa. Can you speak to this other landmark in your career and in Canadian medicine.
A: What was attractive was that the Chief of Medicine, John Sealy, wanted to create this new division. John had a heart for palliative care and when he left the Dean’s office, he said, “I want to be trained as a palliative care doctor.” And he was wonderful. His support and that of the president of the hospital basically gave me carte blanche. The first thing I did was to go to Montreal to see Bal and Ina, and I said, “ok what do I ask for cause it’s probably the last time I’ll get to ask!” So we created a five-page document about what should be in place and the resources needed and then I thought, “oh my god, what am I going to do now!” It was a busy but fulfilling time.
Q: Have you been working in Ottawa in palliative care since?
A: Yes, except for about nine years I quit medicine completely to run an organic farm. I think this is related to palliative care in that the message patients would always say is, “do what’s in your heart, don’t wait.” People don’t care when they’re dying if they spent that extra day at work. What they are thinking about is relationships and fulfillment of dreams. And by this time we had six kids, and we eventually had eight and hey, my life was typical- academic medicine, very busy, late nights, just not enough time for the family and so we dreamed for a few years. My wife kept saying, “why don’t we have a farm? And I would say, “a farm? Are you kidding? We can’t have a farm.” And sure enough we had a farm. We produced grass-fed organic meats and we homeschooled the kids; it was an adventure of a kind. As the older ones were starting off to do other things, I actually went back to Dr. Sealy who had previously come to me for training and he said, “we’ll train you back!” And it was like rediscovering palliative care again in a very positive way. That was 2008 I have been practising full time since then.
Q: Backing up, you mentioned your interest in theology. That was quite early on in your life I take it. Were you in your 20s or 30s? Did you study out of academic scholarship or interest or did you plan to serve as a minister?
A: I was 31 when I graduated with my master’s degree in divinity. Initially it was just to be a well-informed layperson and then I began to imagine somehow integrating it- that I would become an ordained minister who somehow incorporated palliative care and spirituality. It did not really work out that way but I think at a deep level, the spiritual journey is part of finding healthy ways of dealing with what I was doing every day. I was a very young man to be working full time in death and dying.
Q: How did you manage studying theology full time and also work as a physician?
A: I was single with no children at that point but I was busy at several hospitals. But I also found working as a physician really helpful. I was always relating theology to my palliative care work and my profs let me. I was always doing spoofs. I did a paper on how John Calvin’s hemorroids affected his theology and I got a B- from a prof who loved Calvin. It was a brilliant essay and deserved an A+ but he wasn’t going to give it to me because I was making fun of his hero!
Q: You have been in palliative care for about 40 years now. Has there been an evolution in end-of-life care?
A: There have been huge changes. There is lot more openness to ideas and basic concepts. I would say that almost all areas now accept that doing good palliative care is part of being a good physician or a nurse which to me is a huge, huge improvement over 40 years. In 1975, they had not heard of palliative care and did not want to hear of it and were usually antagonistic. At the Royal Victoria Hospital, the idea that we were given prime real estate for something that should not really be happening was seen as offensive. It was more the senior doctors than the administration. The public was frightened about death but very interested. And most nurses were supportive. But physicians were threatened by palliative care in the beginning.
Q: In the 1970’s, why were physicians threatened by palliative care?
A: The threat was that people wanted a change. Physicians were being asked to tell their patients the truth about their illness. In Canada in the 1970s, you did not tell people they had cancer. This is hard to believe because it is not that long ago. We told patients that their pain did not have to be this severe. To trust our assessment meant that physicians might have to change all of their care and they would have to recognize that these patients were not well controlled.
Bal himself had gone to a seminar in 1973 and he was asked to be on a panel. He had to read this book about Kubler-Ross and as the discussion started he realized he did not really know how patients were dying at the Royal Vic. So he asked two med students to help him do a study over the summer of ’73 on how people died at the Royal Vic. He was totally shocked by how terrible the care was and how many patients were in severe suffering with pain and other symptoms.
It was typical that most physicians denied the problem and to have this revealed to them meant they would have to do something. When we introduced giving small doses of oral morphine on a regular basis which now is “of course”, that was totally revolutionary then, and it caused the reaction of, “you are just killing them. You can’t do that.”
We were convinced that we had a message that we had to tell the rest of the world. I think physicians were threatened, partly by that enthusiasm. We were going beyond the bounds of being physicians; we were advocates for something that meant big, big change for how we dealt with death and dying.
Q: These were exciting times. All the stars were in alignment. Who knows if it could be done now – it was the right time with the right people.
A: From McGill’s point of view, palliative care is one of the biggest accomplishments of the university. And yes it was an exciting time, and sometimes in exciting times like that you only see that after the fact, but we knew things were changing. We kept thinking, “how can we know we are changing the world when we are only one little team”, but there was sense that we were on to something that no one else had done. Bal said, “we are warriors, let’s go and let’s get the very best place in the Royal Vic and let’s do it right in their face”, and that’s what we did – we were very defiant.