After I listened to a talk at Pallium India-USA last week by India’s leader in palliative care, Dr. M. R. Rajagopal, I received news of two people succumbing to cancer in India.
My uncle gave up his fight with advanced lung cancer four days ago. On January 28th, hours before Dr. Rajagopal’s talk, a friend’s mother breathed her last after battling lymphoma for over two years. Both patients struggled with the pain of chemotherapy and radiation. I know that for the families of both those patients, keeping the patient comfortable on the painful march to death became the biggest concern. Likewise, keeping all terminal patients comfortable, happy and pain-free is Dr. Rajagopal’s goal and that is the message he carries with him wherever he talks around the world.
At 64, Dr. Rajagopal, bald and slight of physique, looks like Herge’s Professor Calculus. The only rough edge on this doctor’s face may be his salt-and-pepper toothbrush mustache. If there were a little bit of a breeze and he was walking on the sidewalk of the Golden Gate Bridge, this gentleman would have to cling tight to the cable of the bridge or else he may get blown away into the Alcatraz.
Frail he may well be, but Dr. Rajagopal blows away people when he begins to talk. I had mentioned this in another post on the day of Mahama Gandhi’s death anniversary. When our small audience heard his presentation at Pallium India-USA’s meeting, we were overwhelmed by his pitch on why palliative care was important and why the medical community and the families of patients needed to listen and show compassion to a patient who, by the time he reaches his terminal state, has lost control of his physical and emotional self.
I got a sense of Dr. Rajagopal’s thoroughness and care in his profession when I heard him talk. I heard how he sculpted his thoughts into just the right verbs and adverbs. I saw how he polished them into words and tempered them with his delightful Malayalam accent. I watched him engaging with his audience and taking great care to make sure that he was not misunderstood, misrepresented or–and this struck me the most–deified.
After I reached home that evening, I read about his compassion and his bedside manner in this story in The New York Times. Just today, I read this story on the cost of dying written by reporter Lisa Krieger for the Mercury News; by the time her father took his last breath, the hospital bill had gone up to $323,000. I include an excerpt of her poignant story below.
Dr. Rajagopal brings us his experience and wisdom in addressing dilemmas faced by people like Krieger. I had a conversation with him also about the perceptions of life and death in the east and the west and about focusing on humanity at the end of life. Thanks to the efforts of people like Dr. Rajagopal, the first palliative care specialists in India will graduate in 2015. The UK pioneered this branch of medicine in the early nineties. America came into it late, only around 2003, but it has made very rapid advancement since then.
Do you think there is ancient wisdom in India about dying well that, maybe, western medicine is unaware of? Have we lost touch with that in India?
Yes, up to a point. None of these things is absolute. I’m not giving facts right now, just my personal view. Very often, once we accept a philosophy, people tend to get fanatical about it. It simply will not do to romanticize everything from the past. I agree completely that we in India have a positive view of life and also of death. Even today, many Indians face the prospect of death much better than people in the west. At least, many people are not afraid to think of death in our country. Maybe, in the past, life was viewed as an inevitable consequence of life and not necessarily as the ultimate tragedy. Death was just the passing from one life to the other and it had to happen. But now we’re getting more westernized and more nuclear.
When I was growing up, I saw old people dying around me. I saw cattle dying in the shed. We were not shooed away from the room where old people were dying. We saw cremations. My grandchildren will lose that privilege. They’ll grow up seeing only life and everything will be concealed from them. I agree with you that we’re losing the philosophical approach.
But there is another side to it. Accepting death is one thing. Dealing with suffering is something else. I have come across people in all religions, very spiritual people, who, when they feel their suffering intensely, lose all their philosophy. But sages like Ramana Maharishi seemed to have overcome all that. That pain and suffering seems to destroy the soul. The person who is suffering seems incapable of taking the pain since his mind is destroyed by the pain.
This may be the other cruel side of our philosophical approach. We can be philosophical about our own suffering but being philosophical about someone else’s suffering? That is cruel.
* Can you tell us why you made palliative care an important goal in your life? Was there something that happened that made you sacrifice so much of your life for this effort?
Let me say that it has not really been a sacrifice. I believe it has given me so much more than I gave it. I haven’t had any major personal experiences in my own family, just that I have seen the suffering of a cousin as a teenager. But I saw many of our own patients suffering needlessly.
I didn’t even know of palliative medicine. I started treating pain because I’m an anesthetist by training and pain management is part of anesthesiology. Most people do not go into it because there’s lot of money in working in the operating room but not in pain management. But that is such an opportunity to relieve suffering so I started treating pain. I found that what I did was only a very small part of what needs to be done because the stuff is not just pain but lot of other symptoms and emotional problems accompanying it.
A book I came across in 1985 introduced me to the concept of palliative medicine, a book on pain management. And in 1992, I came across a British nurse, Gilly Burn, who was traveling through India preaching palliative care. She met me in Calicut where I was working and asked me if I wanted to attend a course on palliative care at Oxford. That was my formal initiation, in 1993.
* Should we feel guilty that when we have the money for a particular mode of treatment, we opt not to give it? Guilt seems to be a huge factor on the part of a patient’s family in deciding a course of action if the family could afford it.
There is more to it than that. People like you or me have not lived with our parents all the time. Not being with them during their days of illness gives us a sense of guilt. This sense of guilt makes us take them to the “best” hospital. But the best hospital is not necessarily the most humane place. What we call the best is often the most expensive, the most technology-oriented, the most inhumane thing, where the suffering man is imprisoned in an intensive care unit, a tube in every orifice, with no difference between light and day while bleeps go on around him all the time. It’s dreadful.
Unfortunately, one of the reasons people take their elderly to such places is not only guilt. It’s also pressure from friends and relatives: “Hey, why are you keeping him here? You need to be ready to spend money on him. He has looked after you all your life.” People feel under pressure, such as what will people think if I can keep him at home. They don’t have the support from the medical system that keeping the patient at home would be the best thing for him now. So the medical system often adds on to the guilt. You want to be seen as spending a lot of money on the patient, giving more medicine that then adds on to the suffering.
* Should a family share all the excruciating details about a family member’s illness and modes of cure with the extended family?
It is the choice of the person with the disease. I remember a terminally ill patient who died in 2010 who planned his death. He made a list of all the people who meant anything to him. He started having closure with them in personal meetings or phone calls.
Some people, especially the elderly, would want to see their relatives. Some patients just want to be left alone. They expect their relatives to be more trouble than help. When distant relatives express anger about not being informed, they are putting their needs in front of those of the patient. It’s wrong, I think. The patient’s autonomy should be paramount.
* I have heard an oncologist in the US who specialized in terminal care say that doctors here don’t focus on humanity at the end of life. Why do you think modern medicine has ignored the process of dying while the birthing process is barraged by so many advancements?
Very true. Maybe in the last half century as we got antibiotics and technology, we have been able to cure more and more diseases. Along the way, however, perhaps we have also became more and more afraid of death. Doctors also see incurability and death as “failure” and don’t want to think about it.
We are teaching today’s medical students just to cure and not to think about suffering. And especially, with all the MRI and CT scans, the human touch is less. At one point we would examine the patient, talk to the patient and then order the X-ray. I know of institutions where the specialist does not see a patient unless all the investigations are first done. The doctor’s interaction is usually with a CT scan, not with the patient. I think the medical community is slowly losing the ability to relate to human beings. Fortunately things seem to be taking a turn for the better with palliative medicine becoming more significant and being present in hospitals.