Palliative care physician Michael Dworkind on dignity in death, the demedicalization of dying, and finding peace at the end of life
“In palliative care we have coined the phrase ‘total pain,’ so we consider not only physical pain, but also emotional, psychosocial and spiritual pain. It’s how people suffer, where their suffering may be necessarily appropriate or where it can be softened, changed or reversed. It’s pain in the total sense. This is what palliative care is conscious of and has taken on.”
By Devon Phillips. Physician, Nobel-prize winning activist, artist, dance enthusiast- Michael Dworkind is nothing short of a Renaissance man. As a newly graduated doctor, he travelled the world before returning to Montreal in 1979 to become the Team Leader for Unit One at the Herzl Family Practice Centre at the Jewish General Hospital. He is still there today as a devoted palliative care doctor and academic, with a string of accomplishments motivated by the need to right injustices in the world. I met with Michael in his office at the Herzl clinic at the Jewish General Hospital in Montréal, Québec.
Q: Take me to the beginning, what was the path that brought you to palliative care?
A: Bal Mount was just starting a palliative care unit at the Royal Vic and I was a third year medical student, he was a prof. Bal had just come back from St. Chrisptopher’s Hospice and he gave a brilliant lecture on the end of life and the principles of palliative care. I was transformed. It was a turning point in my view of medicine and my career. I finished my studies at med school and went into family medicine at the JGH and was the Chief Resident at the Herzl Family Practice Centre. Back then I had this Schweitzerian dream of working in Africa so I went off to the Ivory Coast and instead got hepatitis and nearly died there, and I said, “I am not Schweitzer but I love to travel so let’s continue to see Africa, the Middle East, the Far East, Asia.” I worked along the way in many places but at Papua New Guinea I had a classmate from McGill who was there with CUSO and he said, “Do you want to join us?” And I said, “Sure”. I was delivering babies, I was doing the whole gamut. It was a tour du monde in 18 months.
Q: And when you came back to Montreal?
A: I came back from my travels in 1979. I heard there was an opening here at the Herzl for an academic position. Michael Klein was the Chief at the time. It sounded like the perfect fit – an academic position would be stimulating and with educational programs, students, palliative care and all that, and so I said, “Yes!” I became a team leader on Team One in 1979 and I have been on Team One all these years.
Q: And when you started, did you have any experience in palliative care?
A: My experience is in family-centred care and when I teach I have this anecdote about my first clinical experience as a med student with a dying cancer patient. I said to myself at the time, “What is going on here? Why is the person with the least experience taking care of the sickest person on the ward?” Fortunately, I had a good senior resident who took me under his wing and showed me how to prescribe opioids and do symptom management and I was grateful for that. I sensed the injustice of having people who were dying get less care, so my mind was already palliative-oriented just through a sense of justice.
Q: Was it apparent at that time that dying people were getting less care?
A: Yes. This is the vacuum where palliative care started. People who were dying were marginalized, they were out at the end of the ward, they were briefly visited, they were in pain. People did not know what to do with the dying so that is why Bal Mount changed the medical world. Shortly thereafter in 1980 there was a tragedy, but a tragedy with an opportunity. A senior JGH hematologist’s wife died a miserable death from breast cancer. And this hematologist said, “How come the Vic has palliative care and we don’t at the Jewish?” Her name was Shirley Berest and he started the Shirley Berest Memorial Fund and he had a lot of rich friends who contributed and they were able to hire a palliative care consulting nurse. When I heard that I said, “Hey, what’s a nurse doing without a doctor?” This was 1987 and I was focusing more on palliative care and I was learning about the consultation practice of palliative care in a hospital setting.
Q: How did the palliative care unit get started at the JGH?
A: I convinced the hospital that we needed some beds, that they couldn’t just leave dying patients in the emergency room. So we started with five beds in 1987, and it gradually grew. I was interested in home care and I developed palliative care in the CLSC Côte-des-Neiges where I began the teaching unit. Soon other physicians were taking an interest in my work. They joined the Supportive Care Team. Back then, we did not have the restrictions we have today, so then we needed more beds, we needed alliances with Bal, McGill, and Dr. Richard Margolese who was the Head of Oncology. I was functionally the Head and they said, “You must take this on in a full-time capacity,” and I said, “No, I am a family doctor first. I like what I do at the Herzl and I have a special interest in palliative care but I want to do both.” What we needed was a full-time academic palliative care position that could be a leader in this field, and so I recruited Bernard Lapointe. We got strong moral and financial support from Hope and Cope. They fundraised and we went up to 14 beds, this was in the 90s. I did a lot of home care. I was doing true house calls up until five years ago. Now most of my “house calls” are on the phone, with families, nurses and pharmacists.
Q: Do family doctors get special training in palliative care?
A: An important element that strengthened the palliative care and family medicine interface was the fact that the College of Family Physicians 10 or 15 years ago made it mandatory that family medicine residents do a month of palliative care. Essentially what was happening was the classic story – people come through an oncologist and they reach a point where the treatments are futile and they are told, “I am sorry, we have nothing more to offer you, go back to your family doctors”, but the family doctors did not know what to do with them. So this is when the college twigged that this was something we needed to rectify so they made it mandatory to have training in palliative care. Suddenly we had residents in the PCU and they had to spend time on the consult service and in the oncology clinics. Palliative care flourished to what it is today.
Q: So does this mean better palliative care services now?
A: No question! It is always getting better academically as well – we are doing research. I mean Robin Cohen and people like her across Canada and internationally, they are bringing the science and the heart to palliative care, making it a true speciality.
Q: Are patients getting good care? We hear that the vast majority of people do not have access to palliative care – is that still true?
A: There are 15% or 16% of patients who get the Cadillac of treatment which includes the consult service and a bed in palliative care. There is the notion that people are getting the best here. It’s the best of the best that we offer, but we cannot afford this for every dying patient. Then there is palliative care in all aspects of medicine. Remember, there is 100% mortality in life. Most patients who are in palliative care, it’s because of cancer, and occasionally end-stage heart disease or massive stroke. Mostly we see cancer because of the clear division when treatment stops and it becomes palliative care. Oncologists always did palliative care and they continue to feel they are doing palliative care but hey, if they are seeing 30 patients in one morning and not offering chemotherapy, they are not really that interested. Oncologists do not want to abandon their patients, they have known them for years and want to be helpful, but their focus is on curing cancer and when there is nothing more to offer there is not the same motivation. So palliative care specialists do consults, we may not take over the care but when there is a pain crisis we can come in sooner and suggest things, so it’s shared care. We have our palliative care teams that increase the comprehensiveness of our approach, something not everyone can access.
Q: What does palliative care offer? What is the philosophy, the mandate?
A: I give this seminar called Giving Hope in a Hopeless Situation. The first part is Family Medicine and The Goals of Palliative Care, and I give the history of the program here. The second part is Advanced Directives and Living Wills. This is an important part of end of life care. I am the Director of the Living Will Project of the Clinical Ethics Committee, and the actual living will document is on our website. I built this program in this institution. But after 15 years, we have a long way to go because death denial is so huge in people, still, and doctor denial as well. The evidence shows that people want to have the end-of-life discussion, when they 60, 70, 80 years old, especially when they have a few diseases. Or maybe they have been in and out of hospital, and they are scared of dying and scared of suffering through inappropriate prolongation of life. We have the technology to keep people going, and to lose all their dignity. Families do not want to let go, so there is discordance in values and struggles arise. About 90% of clinical ethics consults are around these issues, when to stop, when to continue, whether prolongation of life is appropriate or not. When I am talking to the residents, I say that patients want to talk about it but they are afraid to bring it up, and doctors don’t know what to say and they fear that they are going to induce depression and anxiety in patents. There is a conspiracy of silence that does not allow discussion about death. The discussion may be happening in notaries’ offices and lawyers’ offices when people are doing their last will and testament but that piece of paper may go into a safety deposit box and may never be seen or discussed again. People change their minds, they have different values, they change spouses, and all these things have to go in a living will. It’s all about quality of life until the end of life. The last two of the four parts of my seminar talk about dignity and dignity therapy, and healing through dying. We explore how to facilitate reconciliation through acts of forgiveness which ultimately helps patients and families alike.
Q: What is dignity therapy?
A: Dignity means values, it means personhood, it means when people have lost their dignity they have lost meaning to their lives and their values have been destroyed. They are no longer husbands and providers, they are just people who are waiting for death and making their loved ones suffer at the same time. This is why people ask for hastening of death, for euthanasia. Dignity therapy brings people back to who they were, not to where they are now. We say, “Tell me about the happiest moments of your life, tell me about your accomplishments, your desires to communicate to your children and to your loved ones, let’s look at the legacy work that you can do at this precious time of your life.” I talk about preciousness of life and the sacredness of the dying process through the demedicalization of dying. When you explore these things, people lose their depression, they feel valued by the professionals, they experience less pain, and this is shown in study after study, such as in the work by Dr. Harvey Chochinov.
Q: Does good palliative care offer dignity?
A: Yes, to patients, and also to their doctors, nurses, social workers, volunteers, everyone. This is where our compassionate listening skills come to the fore. You need to listen to people’s life experience, how they evolved through their various life stages, their accomplishments, what they are proud of, things they regret; this validates the person who they are. Then they forget about what they have lost and instead focus on their life experience. The last of the four part series is called, Healing Through Dying, and it addresses the whole notion of reconciliation, closure and forgiveness, receiving and giving, it is powerful stuff. This is part of spirituality. It is the soul of humanity. You get deep into people’s psyche so they are released of all their regrets, absolved of their sins, just by being open and being able to sit at the bedside listening with compassion and sharing their life’s journey. They feel complete and they are peaceful when they die, remarkable. I witness this. It is the greatest privilege of my work. This is why I love it.
Q: People are very concerned about pain at the end of their lives. Is there anything you would like to comment on regarding pain management and palliative care?
A: Good pain management is the cutting edge of palliative care. The scientific advances have been enormous. We have come from the paranoia around morphine to proving that precise assessment and targeted use of opioids and other co-analgesics make people feel physically much more comfortable. The challenge is patients with total pain where the profound suffering extends beyond the physical to the psychosocial and to the spiritual. And now I am a cannabinologist as well – this is another new chapter in my life, the use of cannabis in pain management. This is a whole area that is just ripe with opportunity but people have that same mindset that this is evil like morphine was 20 years ago. In palliative care, we are using cannabis not only for pain, but also it helps patients with their appetite, nausea, anxiety and sleep.
Q: Your life’s work is very demanding. How do you manage these demands and how does your extreme sport (biking 12 months a year) come into this?
A: You have hit the nail on the head! I mean if I did not have my all-season cycling, I would be in much poorer shape to handle the stress of this work. I avoid hospital politics. I am at the bedside and am at the student-side. I have a very supportive wife who was the bereavement coordinator for Hope and Cope for 15 years while the children were growing up, so between her doing bereavement and me doing palliative, we never got invited to parties, no joke! And I have my own spirituality, I follow a buddist tradition, I meditate. I explore art so it’s not all medicine, there’s two wonderful children, a dog, and a country place so I can escape although I do respond to home care emergencies. I am politically active. I have been interested in the nuclear issue since the early 80s. I am very concerned about climate change. It’s an empowerment process looking at what’s happened to the world in terms of militarization, the tremendous imbalance of the poor and the rich. My travels showed me that children die from dirty water and preventable diseases. Those injustices are part of my journey that leads me to this kind of work…and there’s never a dull moment. I feel very fortunate and grateful for my professional and family life. At the end of the day, you learn that is what really counts.