Grasping Palliative Care
How one Canadian doctor is applying the ancient Hindu approach to end-of-life care to help model an emerging paradigm in the West
Dr. Sunil Datar, 56, was born in Pune, India, raised in New Delhi and emigrated to Canada in 1980. He specialized first in hypertension, then oncology, moving to Edmonton, Alberta, in 1989 to work at the Cross Cancer Institute, where he took an interest in palliative care medicine. The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Dr. Datar’s focus is end-of-life care for cancer patients, though palliative care is also used with debilitating medical conditions that are not life-threatening. In excerpts from a recent interview with his friend, Aran Veylan—a family court judge and long-time supporter of Edmonton’s Mahaganapati Temple—the doctor (email@example.com) tells his story.
IN 1989 I CAME TO WORK AT EDMONTON’S CROSS CANCER INSTITUTE, then in a small building on University Avenue, when it still absorbed all the cancer patients from the local area. The number increased each year. In 1994 the Alberta Cancer Board president called a meeting of some 150 physicians and forewarned, “This cannot go on. The building cannot handle so many people. Every cancer patient thinks they have to come here, but we don’t have the capacity.” No one had a solution; most thought it was the Institute’s problem, not theirs. But four of us from Cross—Paul Walker, Elizabeth Johnson, Barbara Seth and I—got together and decided terminal patients should be given palliative care outside the hospital. This would lessen the burden on Cross and also improve the end-of-life experience for the patient. That’s how I became involved in palliative care.
But even now, palliative care is not well established in Canada. Home visits are its treatment mainstay, but these somehow don’t even exist in Canada anymore. Textbooks on the subject do exist, but they are much less advanced than books on, say, cardiology. There is no four-year training program. The best you can get is a certificate.
The Basics of Palliative Care
First of all, you need to have a heart for it; you need to have a passion for it. Most importantly, there’s no need to keep reminding patients that they are going to die. Just treat them as friends, treat them as patients. I believe it’s essential to treat the whole family, not just the patient.
Your healthcare delivery structure may comprise two or three people, including a nurse and maybe even a student nurse or a student physician. Care is focused on the patient but extended to the spouse or other direct relative and then to the children, uncles, aunts, friends, etc.
In my ordinary home visit, you have about five people in the room—me, the nurse and three people on the patient’s side. First I sit down by the patient’s bed and introduce myself, explaining my background in a brief, five-sentence synopsis so they know why this doctor is visiting now when they’re actually going to die soon. The reason for my visit is thus established.
Next, I ask my standard medical history questions, as in a non-cancer or non-death situation. That gives me an idea where I’m going next. I ask patients to speak freely about whatever they want to tell me. Generally this includes how their cancer was diagnosed and what they have gone through. The important thing is to allow them to freely express themselves.
After about ten minutes, they usually begin to repeat themselves. I say, “Well, how about now you tell me what is it that I can do for you?” Then they tell me about pain or other symptoms. That’s when your knowledge applies and you offer what help you can.
Usually they conclude with, “What is going to happen to me now? How long do I have?” That’s where a touch of spirituality comes in. I remind them and the relatives—especially the spouse—that even if you heard from the Cross Cancer Institute doctor that you have only three months to live, it is only God who gives you life and God is the one who’s going to take away life. Neither the Cross Cancer doctor nor I can tell you how long you are going to live or when you are going to die.
I tell them that in subsequent visits, when I think the end is near, I will say, “I think we are getting there.” “We are getting close to the door.” “We are approaching the door.” “We are almost at the door.” I explain that my accuracy will get better when we are closer to that point. Amazingly enough, they actually absorb all this very well. The meeting always ends on a positive note because there is nothing to hide, nothing to keep a secret. Because I bring spirituality into it, they actually feel quite comfortable.
Understanding the Person’s Needs
An important aspect of palliative care is to gain an understanding of the patient as a person. When I am in their house, I look at the pictures on the walls and books on the shelves. From this I get clues that are useful in communicating with the patient. An example is that of a Japanese immigrant who was living in an isolated area in Onoway, Alberta. It took us an hour to get to this absolutely run-down house, filled with books and papers and technological gadgets. There was no room to even stand. This man was in pain. I could sense that though he had lived in Canada for forty to fifty years, he was regressing as he neared death because he wanted to do it the Japanese way. I don’t know a lot about the Japanese way, but I got my clues from what I was seeing in his house—books and DVDs on Japanese culture. Many Asians, especially Japanese people, to my understanding, want to lie down on the ground. The two nurses who had accompanied me there kept insisting he lie on the bed, to be more comfortable. And he kept on telling them, “I do not want to lie down on the bed.”
I said, “You know, I think we should put him on the ground on this thin little carpet; I think that’s where he’ll be comfortable.” The nurses did not like that, but the patient just loved it, even though he could not express much because of his aphasia. As soon as his back touched the ground, his expression became one of complete solitude and acceptance that said, “I am close to the ground now. I think the time has come to leave this world.” He died the next day. I could sense all this because I was in his zone. In an examining room, a totally controlled situation, I would not get this sort of insight.
Human touch: Palliative care aims to ensure appropriate medical and personal care to the natural end of life for all concerned
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India’s Natural Palliative Care
My relatives in Pune constantly heard from me this term—palliative care, palliative care. One cousin challenged, “You talk about this, but where can we see it?” I replied, “You know what it is. If you take me to see someone dying, I can show you.” Just two days later my cousin phoned me and said, “The elderly mother of my friend is dying at home. Can I take you over there so I can see what you can do for her?”
I agreed, so he took me to a home in a badly rundown apartment complex. The family’s main room could not have been more than six by eight feet. There I spoke to the rather pompous son and his wife. They explained to me that their mother is behind this wall and she is resting to die.
I tried to gather medical information from them. They gave bits of information about kidney, heart, this and that. I saw a young 20-something woman standing just outside the door, evidently wanting to hear what I was saying, to see who this doctor from Canada is and what he is going to do. Eventually I asked the son who this person was. He said, “Well, she’s the one who actually looks after my mother.” I replied, “Can I have a word with her?” And he responded, “Well, there is nothing really to talk to her about.”
I countered, “OK, can I see your mother?” So I walked into another room where this elderly lady was lying on a cot—a charpai they call it there. She looked so much at peace. She was so well dressed, so well cared for. Her clothing was so clean. She was covered by a thin, old-looking, but clean blanket. Next to the bed was a tiny table with a glass of water, a couple of bottles of pills and prayer beads. There were pictures of the Gods on the walls. It was a wonderful scene.
The elderly lady could not talk, so I chatted with her caretaker about what she does for her. She narrated the whole day’s schedule. It was exactly palliative care, here being delivered in a Hindu home. The elderly lady did not require medication. She did not require my fancy infusion pumps. She did not require anything. She was at peace with God. This young lady in her twenties was the messenger and the caretaker. And all I did was agree with everything they were doing. The lady died within forty-eight hours. The concept of palliative care is practiced every day in India. It is so much a part of life that they don’t have a name for it, nor has this concept been developed in the field of actual medicine there.
I’m involved in a project to make a movie on the topic. Why? Because a five-year-old girl sitting in Spruce Grove acreage, a ten-year-old boy in a Riverbend house, a 12-year-old school-going person, a university-going person in Saskatoon, Saskatchewan, and a 55-year-old male whose father has been diagnosed with cancer—all these people need to be familiar with this term, palliative care, so they don’t hear it only when death is near. All the age groups of both genders who have a relationship with the patient should know the term, so that it is not a surprise to them. Eventually palliative care should become an accepted norm. People should say, “I think my grandmother is close to passing on. Well, I saw this show on TV ten years ago and I felt comfortable about it; I think my grandmother will be okay.” Right now, attitudes about death are always negative.
Many people have taken an interest in the film as a needed resource for Alberta. I was concerned that it had no monetary value attached to it, that it was strictly educational. But when I voiced my concerns to an accountant with the Alberta Health Services, he stopped me right away. “I would like to point out that by distributing this film over time, education will get delivered to the right kind of people, so the number of visits from patients to doctors will be reduced, the amount of time spent by the healthcare people with the patients will be reduced, the extent of confusion which is created around this field will be reduced, the amount of interest generated among physicians to deliver these healthcare services in homes will be increased, thereby the monies will be saved.” From his point of view, such a movie would save them millions of dollars after five or ten years.
Hands-on care: What we call palliative care is naturally present in all ancient cultures
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Dying of Old Age
Under our present medical concepts, people have to die from something, they can’t just die of old age. When I am required to fill out a death certificate, I am supposed to write down the cause of death. For one elderly lady in a nursing home, I wrote “normal aging.” The coroner’s office called me and said that was not an acceptable cause. I would have to put something else. We settled on “coronary artery disease” because everybody has it when they’re dying, as did this elderly lady. Whether that was the cause of death, I don’t know. But it satisfied the coroner. Later he himself realized that there are people who just die of age, and not some disease. Our College of Physicians has spoken in terms of life—maintaining life, improving life, this life, that life. It is only now they have accepted that it is okay to die. Finally we can tell the patient’s angry wife that her husband died because of aging. There is no need for her to file a case of negligence over it. It was something that had to happen. Death is equally part of life.
In the next five years I am going to work on spreading the concept of palliative care. I don’t know how many practicing physicians I will get to adopt this approach, since they will not see any monetary gain in it, so I’m going to start with medical school, with the medical students. They are brilliant, still open and just absorb everything. I think I will have great success at that level.
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