Pioneer nurse in palliative care Sue Britton on the start of palliative care at the Royal Victoria Hospital, Operation Marmalade and what really matters in life
"So my mission now is to teach people to not be afraid of dying and that what we have here, life, is just part of the journey and I would like to teach people how to do it. I can teach people to let go.”
By Devon Phillips. Sue Britton does not shy away from challenges. She was hired as the first nurse when the first palliative care unit opened in Québec at the Royal Victoria Hospital in 1975. An incredible joie de vivre coupled with 40 years of palliative care nursing experience allows Sue to roam easily from topic to topic, covering her past as a struggling single mother to the profound draw to end-of-life care and how all these components have woven together to make hers a connected and fulfilled life. I met with Sue in her home in Westmount, Québec.
Q: How did you become interested in palliative care?
A: When I was a young nurse in training in the late 50s and early 60s I was very affected by people living with life-threatening diseases because we did not take care of them properly. We gave them a standard dose of morphine and it didn’t matter who they were, their gender, what their pain tolerance was, they got 10 mg of morphine and if they had breakthrough pain, they just had to wait the four hours to the next dose. I remember patients whimpering as they waited that last half hour. We always gave it by injection; there was no oral medication. We used to isolate them and we did not talk to their families. I was aware of these people, I can close my eyes and still see them…These people were not a priority and many were so sick they could not ask for anything. The acute patients in the surgical wards were the priority. That bothered me.
I was also attracted to palliative care because I saw the family as survivors, just like I was as I came out of an abusive marriage with three kids. I saw that life does go on and we would talk about that and say to the families, “What are you going to do now? What are your plans?” You do have to learn resilience.
Q: You were there at the start of palliative care in the 1970s at the Royal Victoria Hospital. What was that like?
A: In 1973 Dr. Bal Mount had been over to St. Christopher’s Hospice [in the U.K.] and had been taught about terminal care. The same year, I was nursing at the Vic, and I would go to Bal’s lectures. He hired two medical students to collect data to prove there was a need for palliative care and they interviewed patients and their families, compiled the data, and presented it to all the hospital administrators. The administrators were absolutely astonished because they had no idea and so they agreed to a two-year pilot project. It was 1975 and I was the first nurse on duty. It was very exciting. I had an interview and I was asked, “How are you going to be with people who are all dying?”, and I said, “Well, the thing is, I see dying patients where I am now on the surgical ward and as long as one maintains a joie de vivre, that’s what’s important.”
We had two nurses that came over from St. Christopher’s and they trained us and I was asked if I could be in duty that first day and I could hardly wait to get to get to work in the morning. I was on duty with Dennis McLaughlin, a certified nursing assistant – it was just the two of us, we are talking 40 years ago. We learned about Kubler-Ross and we had new tools. We had liquid morphine called the Brompton cocktail and of course we looked at the patient and the family being equally important - this was all new.
Q: Do you remember your first patients?
A: Absolutely! The first two patients were Mr. Levesque and Mr. André and if I close my eyes I can see them and their wives. Mr. Levesque said this was the best place on wheels because we paid attention to them. When they came in, there was a little card that said, “Welcome Mr. Levesque”, and there was a vase with a fresh flower in it. And in those days we used to take air mattresses and fill them with warm water so that when they were admitted they came in to a warm water bed and when they were put in a chair to change position, we would put hot water bottles on the mattresses so they would go back into warm beds. And we sat with the families and we listened to them.
The family is not all that strong anymore. In the 70’s there was more kindness. It started shifting in the 80’s and 90’s with the “Me Generation”. When people are sick they are vulnerable and they need kindness and compassion and they need someone to listen to.
Q: What happened next?
A: Six months after the palliative care unit opened, I became the head nurse. I was there at the RVH from 1975-1977. In 1977 I moved into home care because I could see the writing on the wall that home care was taking precedence. We had the unit, a consult service, home care service, research and bereavement services – these were the five arms. We had 100 patients between four of us nurses, we had an average 15 to 25 people per person and I remember having five people dying at once. We met twice a week for rounds with the doctors. It was 4 p.m. to the next day on call during the week and on Friday we were on call until Monday morning. There was always a physician on call with us. A lot of the families were amazing. I had a lot of patients die at home, but you have to have the right fix for a death at home.
Q: I hear you were in the thick of Operation Marmalade. What was that about?
A: In 1976, I was Head Nurse and an American, Robert Simpson, arrived in palliative care. He was age 40 with a diagnosis of pancreatic cancer and out-of-control symptoms. We were told he was working on his PhD, and once his symptoms were under control, he would go back to his cousin’s who he was staying with in Montreal and then home to his family in the U.S. We gave him pain medication, one nurse got him fresh strawberries, another older nurse made him Eggs Benedict. He stayed two weeks and left.
Dr. Bal Mount headed a big meeting with everyone, and he said, “Remember Robert Simpson, well, really he is Robert Buckingham, a medical anthropologist and an undercover patient.” Robert had been given an incision on his neck to look like a node biopsy and ultraviolet treatment on his back to look like radiation treatment. He entered through ER, into a 13-bed holding unit and then went to a surgical unit and then to palliative care.
Robert presented at surgical grand rounds to talk to us what it was like to be a patient. When he presented, you could not get in the door. He was amazing. He said that when you are working with patients, you ask the most personal questions, but you never share anything of yourself. And that’s not suggesting that you tell your deep secrets but if you read a good book or go to a great movie, you need to make yourself a person rather than just a professional, then there will be some sort of bond between you and that is so important.
And he said that one time the whole surgical group came into his room and asked him to stand up and when he stood up, his pajama bottoms fell to floor and he struggled to get them back in place and no one helped him. A resident later went back and apologized to him. That guy was sitting in the audience and Robert pointed at him and said, “I will never forget you.” Kindness is what counts- the look sometimes, the touch sometimes, the presence, and you have to know how to do this. That was the turning point and the start of palliative care today.
Q: Were you aware at the time that this was a historic time in palliative care?
A: Yes. First of all, we were pioneers. It was a very exciting time because we were breaking ground. And we got everything we gave back in spades… In home care, my colleagues heard what I reported but they did not see the essence of who I was as they did on the unit. And I remember feeling a bit lost about that and not getting the acknowledgment and one of my colleagues said, “You are looking in the wrong place – look at the patients and the families and what they are telling you. That’s what matters.”
Q: What wisdom would you like to share with nurses starting out in palliative care?
A: I would say to not to worry about having the answers, that it is better not to say anything if it doesn’t feel right. And if they ask, “How long do you think I have?” ask them how they feel about that. Nobody can really tell you how long… When people ask me that, I say that if there is something you want to do, see someone, go somewhere, then this is the time to do it. I always ask what did they wish they had done and you know the things that they said were all were in reason and they did not let themselves do it. A lot of people who are dying say that they wished they had had more fun. They wished they hadn’t saved so much money, they wished they learned a musical instrument or joined a choir – all things that were within their reach.
Q: When your kids were small, you were working full-time in palliative care. What did they think about your work?
A: Sometimes I had to work on Saturdays and I would bring them as volunteers. Once when I had to bring my two youngest to work at the hospital with me and I said, “You sit here in the family room because I have to listen to a report”. They used to help with the laundry and take the trays away after meal time and my middle son he said, “Mom, there`s some teeth on the tray!” (laughter) So I showed him to put the teeth in a little container with mouthwash and he went back with them (more laughter). And my older son he was there once after a patient had died. It’s often children who show the way because they do not have fear, they will get right on the bed with the dying grandfather. You know when people asked me, should the children be exposed to this, I would say it depends on the parents. If they are handling it well the kids will handle it well. If the parents are not handling it well, the kids will not handle it well. That`s the parameter to use.
Q: You have been a witness to many deaths. Do you have any thoughts you would like to share on death experiences.
A: When we first opened in January 1975, Elizabeth Kubler-Ross came to talk to us. We studied her and she told us a story about a patient, Gertrude, who she visited at home and was close to at the end of her life. Kubler-Ross was in great demand at that time giving talks. She said to Gertrude, “I may not be back in time to see you again but I want you to do something for me on the other side to prove to me that there is another side.” So when she came back, Gertrude had died. Kubler-Ross was living in Chicago at the time, very similar climate to ours, and from her window in her den, there was a magnolia in full bloom facing her den, this was in winter, and Kubler-Ross said, ”That was Gertrude.” You could hear a pin drop, people could not believe it.
I read a book by Eben Alexander, a neurosurgeon who at 57 was in coma from brain meningitis. He wrote a fabulous book called “Proof of Heaven”. I was fascinated by his book and I believe it all because I have had so many experiences with people who see those close to them near the time of death, or have been visited.
I do believe in God and I always have, even as a child… I always knew that God was with me all the time. My belief in God this has helped me with end-of-life care, absolutely, and my yoga.
Q: Can you explain the connection between your work in palliative care and your current work as a yoga teacher.
A: I did yoga training starting in 2003.I needed to reinvent myself. I took a month-long intensive where I learned lot about myself. It took six more years to get 300 more hours and one evening we spent dying and going through the five koshas of having to let go. Some people were sobbing with this exercise. I lay there and I thought, “We don’t teach people how to die.” My mission now is to teach people to not be afraid of dying - that what we have here, life, is just part of the journey and I would like to teach people how to do it. I can teach people to let go.
I work as a yoga teacher at the Addictions Unit, Griffeth Edwards Centre at the Montreal General Hospital. Addictions and palliative care are similar in that people have to give up something. Their lover is their substance, their vodka bottle that they take to bed at night, the drug that soothes them so they do not have to feel. It’s the same problem as patients having to give up life, having to let go and there are the family issues. And they need to know what to do, how to behave.
Q: Looking to the future- what do you have planned?
A: It is distressing knowing that only one out of 10 Canadians gets adequate palliative care. It’s hard enough when you get enough support, but when you don’t get support, it’s horrendous. People call me and ask for help and I tell them this is what you can do and this is who you can get in touch with.
I also will continue giving workshops… and I let things happen the way they are supposed to happen. I get referred people, I counsel in my private psychotherapy practice, and I am a paid volunteer with an honorarium at the addiction centre.
I miss palliative care. It was always challenging. There was always something I had to figure out, with the help of the people you were working with of course.
Q: You say that people do not want to talk about death, that this is still a death denying society. Has there been any improvement?
A: No, no improvement. Every one of us has to address our own death. We have to have a mandate. You do not have to go to a lawyer - you can go to a notary or go to the organization, “Speak Up”. You need to have the conversation, discuss the issues, and then make your plan for end-of-life care.
Q: Is there anything you wish you had done that you have not done so far?
A: You know, I feel I have done everything I wanted. I have loved my career. I have loved all those patients I have worked with, and their families. I still see them. I write Christmas cards to patients’ families from 30 years ago, 40 years ago. I see them out on the street and there is that connection. I feel very privileged. I am very impressed with vulnerability. I have often questioned myself – why did I like nursing? Because I like people who are vulnerable, because they are real.
Posted January 6, 2015