Advocate, educator and social activist Kappy Flanders on the ongoing need for public education about palliative care.
“Let’s stop talking about euthanasia. Let’s talk about palliative care.”
By Devon Phillips. Pragmatic, down to earth, a networker and a connector par excellence, Kappy Flander’s philanthropic work including her long-standing commitment to palliative care and public education has been remarkable and has resulted in many awards, including an honorary doctorate from McGill University in 2009 and in November 2015, becoming invested as a member of the Order of Canada. I met with Kappy in her home in downtown Montreal.
Q: First, let me congratulate you on becoming a member of the Order of Canada. Were you surprised to be nominated?
A: I was shattered! I was overwhelmed and deeply honoured. It’s not something you expect.
Q: I hear the ceremony took place in November- what was this experience like?
A: It was quite amazing because of the people you meet. There were about 40, all amazing people from all walks of life who have done extraordinary things. There was a man who was the first to write about the early history of aboriginal residential schools. There was another man who started the healing circles. There were a lot of musicians and doctors, all very interesting people. It was exciting to meet Chris Hadfield and Mark Carney, and to see Harvey Chochinov. Quite amazing!
Q: An inspiring experience?
A: That is exactly what it was, inspiring. I know the Governor General David Johnston and his wife Sharon from their time at McGill, and while the ceremony has its formal aspects, they are very unstarchy people so they made the ceremony intimate and very warm at the same time.
Q: The achievements of the members of the Order of Canada make one proud to be Canadian.
A: That is the really important part and as far as I am concerned, I am an adopted Canadian and I am really proud that Canada has adopted me. People say to me, “Don’t you miss London? And I say, “No, I don’t miss London, I don’t miss England; it was so long ago.” And I am asked, “Don’t you want to go home?” No, I don’t because Canada is very much my home and I feel very Canadian.
Q: You have dreamt up and implemented many projects for public education including the Mini-Med and Mini-Law series, but I am also aware of your very deep and abiding commitment to palliative care. How has this commitment come about?
A: My husband died of lung cancer in 1991 without palliative care. I had never heard of palliative care. I was on a trip to Israel after he died to see my mother and somebody said to me, “Oh you should meet Dr. Fink. He runs something called palliative care at the Hadassah Hospital.” So I met with him. We sat in the garden on Mount Scopus overlooking the Dead Sea, so beautiful and so wonderful, and he started to talk. He was a lovely English family physician who had retired and moved to Israel. He went on to volunteer at the hospice a couple of days a week and ended up running it as a volunteer; he never got paid. After he explained palliative care to me, I said, “We could bring you over to Montreal and you could explain palliative care to us and we could start something because it sounds so amazing. He looked at me very strangely, and I said, “Why are you looking at me like that?” and he said, “Well, Montreal is where palliative care started! You have the guru of palliative care there - Balfour Mount.” So I came back and met Bal and that’s how I became involved.
Q: And how soon after did you co-found the Council on Palliative Care?
A: In 1994 after we had raised the money for a Chair in Palliative Medicine, I asked Dick Cruess, who was the Dean of Medicine at McGill at the time, “What am I going to do now?” So he said, “Start a council.” And so I did!
Q: What was missing that made you think that a council addressing palliative care was required?
A: The same thing that was missing then is what’s missing now ̶ knowledge about palliative care. The community doesn’t know about palliative care and the few who do know about it think that it’s only for the last three days of life. They are terrified of it. There is the same need for education. Sometimes it feels as if nothing has been accomplished in 21 years.
Q: How has this lack of understanding about palliative care impacted on the experience of dying?
A: While there is an absence of enough palliative care because there are not enough beds, not enough doctors and not enough nurses, the real absence is the absence of understanding.People die the same way they always have. An oncologist will come into the room of a terminal patient and say, “Okay, we are going to do another MRI.” You look at them and you think, “What are you doing?” Never mind the money that it’s costing the system, but the cruelty ̶what are you putting this person through? What are you putting the family through? Why? The patient is practically in a coma and the last thing that is needed is another MRI. When a doctor orders another MRI, another this or another that, they are torturing people. At Harvard, they are developing an educational curriculum to tackle the problem from a different angle. Rather than training doctors, they are training patients. There are nearly 100 videos in 10 languages that offer patients advice on how to explore goals of care with their physicians. It’s not simply about educating doctors but patients as well.
Q: What are some of the biggest challenges the Council currently faces in fulfilling its communication and education mandates?
A: Education and dissemination are our biggest challenges ̶ it’s always the same thing. We have a really good group of people running workshops to reach the public but you have to find the public to reach and that goes back to the fact that people are scared by the word “palliative”. Because they think palliative care is for the last ten minutes of life, they say, “Oh well, I am not ready for that.” They think that palliative care means being admitted to the unit or going to a hospice. We have to explain that palliative care could mean months or years of better quality of life.
Q: What is meant by early palliative care?
A: The answer is to ask your doctor to give you a referral for a palliative care consult. This consult will help you and your family. Everybody in the world is terminal at some point. If you have a heart attack and will be up and running around in a couple of weeks, a palliative care consult isn’t necessary. But if you have lung cancer or ALS or some kind of terminal cardiovascular disease and nothing can be done medically, then a palliative care consult is important and there are lots of things that can be done. An oncologist will say, “There is nothing we can do”. Not only is that not true, it’s not correct. Palliative care is not for the last 10 minutes. It’s not even for the last three weeks. People can benefit from months of good quality palliative care. My husband Eric was sick for a year and a half and died at home and everyone knew that he wasn’t going to get better. The nursing help, the morphine, the oxygen all was there, butit would have really benefitted us all to have psychosocial help. My mother also died at home. When my mother was dying of lung cancer in Israel a couple of years later, we registered her with Dr. Fink’s hospice. There was a phone number that she could call anytime, 24/7. Just knowing that someone would answer the phone if something went wrong was tremendously reassuring.
Q: So it was very reassuring to know that contact with palliative care specialists was there when you needed it.
A: Yes, and that is what this medically assisted dying is about – it’s about knowing that it’s there. I am not sure how many people will use it. I am not sure how many people used that hospice phone number in Israel, but I know they all used it once just to make sure it was working. It’s completely subconscious.
Q: Do you think that the fact that so-called “medical aid in dying” is available now in Quebec will change how end-of-life care is perceived? Will the needs for palliative care be the same or will they alter in any way as a result?
A: The needs of palliative care are still the same but again, if everyone knew about palliative care and how it could help you, there would not be the same need for euthanasia. The word changes every week – euthanasia, medical-assisted dying, physical-assisted dying. I like the word “euthanasia” because it says what it is. Just having been at meetings with palliative care doctors and nurses recently and seeing how tortured they are, I understand how horrible Bill 52 is for them. I personally think the Oregon program is better. The patient gets the medication and if they want to use it, they do. My understanding is that in Oregon, after a person dies, often the medication is still in the cupboard. I feel that is a better approach. You are not asking someone else to kill you, someone for whom it is terribly painful. I think I probably feel very much the same as most other people in that I don’t want to die in pain and agony. If I get run over by a bus, please just put a pillow over my face. I have told my children very, very sincerely, I don’t want to be intubated, I don’t want to have my ribs cracked open, I don’t want any emergency measures. But, if I have an illness and I am terminally ill, then I would really like to have palliative care and be cared for. Then no one will have to put that pillow over my face because palliative care will care for me and my family.
Q: Barbara Kay, in a recent article in the National Post, calls for making sure that palliative care is truly available first and foremost before having euthanasia available, to ensure that people actually have a choice.
A: I agree but there’s available, and then there’s people knowing about it. It’s not just a question of availability. And, even more than that, I see people not asking about palliative care because they don’t really want to know – they are scared. I think we have to be inventive and down to earth in how we reach people. I don’t beat around the bush. I can’t use all these euphemisms. In my book, people don’t pass away, they die. I mean – “pass away” – where are they passing to? People use these euphemisms and I think it’s all part of the fear. Dying doesn’t scare me as long as I am not in pain. Pain management is such an important part of palliative care. If the pain is bad they give you morphine until you are comfortable, and that’s fine.
Q: Looking to the future, do you have special projects in the works?
A: I have a lot of balls in the air at the moment. I recently resigned as chairman of an advisory committee for a Middle East peace project because I felt I was not the right person for the job. I am a connector, not a fundraiser, and I didn’t think this was the right place for someone of my age. You need younger people who have their own ideas and can reach different communities. The outreach program that Jo-Ann Jones and Sue Britton are involved in – videoconferencing to outlying areas from the Children’s Hospital – is really interesting. When I was at Rideau Hall for the Order of Canada ceremony, there was a family physician from Bristol, Québec, who had formed a grassroots society of rural physicians to facilitate their knowledge and education. He was trying to remedy the disparity in healthcare between rural and urban settings and he has partnered with medical schools across Canada to develop programs tailored to rural medicine. I thought it would be wonderful to get in touch with him. We need education going to outlying areas and he knows the communities. I will contact him. That’s what I mean when I say I’m a connector. I really want to get more advocacy for palliative care started. If people don’t understand that there’s more to end-of-life care than euthanasia then we are in big trouble. The fact that the law came in, then went out, and then came in again gives us a chance to talk about palliative care – let’s stop talking about euthanasia. The future of the Council on Palliative Care is important to me. I want to know that whatever happens, it is in good hands and that it will continue because I have a deep feeling for it. I started it and have co-chaired it for 21 years. I’d hate to see it disappear.
Q: So no matter what happens out there in the political environment, we will always need palliative care and the Council on Palliative Care will always have an important role.
A: The need for palliative care will never change because people are always going to die. When the Quebec Minister of Health said that we don’t need beds in the west end of Montreal, I thought, “Oh that’s really good news. There must be something I don’t know about. I guess people are not dying in the west end!” I find working with the government very, very difficult. I don’t have the patience. It takes team work. I’m really happy that so many new people are joining the Council from various centres, including the McGill University Health Centre (MUHC) and Cedars CanSupport. There are so many people on the Council who can take over and move the Council to new heights.
Q: A personal question - where does the name Kappy come from?
A: My real name is Marcia. We were evacuated to the US at the beginning of the war when I was 14 months old. I have an American cousin called Marcia, and apparently New York State was not large enough for two Marcias! My mother’s maiden name was Kappel and she was called Kappy at school so I inherited “Kappy”. I have never been Marcia. When I was in a doctor’s waiting room last week, they called “Marcia Morrison” (my maiden name). I just sat waiting. After a while I got up and I said, “You know it’s really not fair, so and so has gone in, and I haven’t been called yet.” I don’t recognize myself as Marcia Morrison. I haven’t been Morrison since 1957 and I haven’t been Marcia since 1939. So I said to the nurse, “Please put the name Kappy at the top of my chart!” I have visions of having something go wrong and when they ask me to identify myself before they put me on a respirator, IҴýappl answer “Kappy”, and theyҴýappl think that I don’t know who I am!”