Palliative Care in India: M.R. Rajagopal

Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, we’ve got one co-host with us and somebody all the way, kind of from the other side of the world with us right now, who is that?

Alex: We are honored to welcome Dr. Rajagopal, who goes by Raj, who is the author of Walk with the Weary: Lessons in Humanity in Healthcare. Raj is an anesthesiologist turned palliative care doctor. He’s a pioneer of palliative care in India and is the founder of Pallium India. And we will learn much more about all of his work today. We are so delighted to welcome you to the GeriPal podcast, Raj.

Raj: Thank you. Thank you, Eric. Thank you, Alex. Thank you, Tom.

Alex: And Tom McNally is a pediatric rehab and palliative care doc at UCSF, and has also spent time in India, working at Pallium. Welcome Tom, as a co-host to GeriPal.

Tom: Well, thanks for having me. Thanks Alex, and Eric. Both of you were my mentors, despite the fact that I’m many, many years older than you. So, I’m appreciative of being able to come back and spend some time with you.

Eric: I am excited for this podcast, but before we get into the topic of palliative care in India, Raj, do you have a song request for Alex?

Raj: It’s a theme song, which we believe would be appropriate for palliative care, reminding us of what is important. It’s called ‘Walk with the Weary’. My colleague and a psychologist by training, Smriti Rana, who heads our policy and strategic partnerships, wrote it, ‘Walk with the Weary’.

Alex: Thank you.

Alex: (Singing)

Eric: That is beautiful. It has a nice, upbeat tune to it too. From a palliative care perspective, it’s not this sad music. It’s got a nice beat.

Raj: Okay. Thank you, Alex. Thank you, Eric.

Eric: Okay Tom, you’re our co-host, you get to ask the first question here.

Tom: Okay, great. Well, I’m excited to, and Raj, it’s so great to see you and to be with you in this time. So, as I read your book, which is really fantastic, it’s wonderful and I hope all the listeners will run out and buy it and give it to all their friends, I was thinking about the ways that we come to palliative care, and some of us just sort of have the bolt out of the blue, a sudden realization that this is the work that we’re going to do and for others, it’s a little more gradual. And so, I’m curious if you can talk to us a little bit about how you came to this work? What was it that brought you in? Was it that thunderclap moment? Or was it something that came along in pieces as you went through your career?

Raj: It was indeed very, very gradual, and the seeds were sown when I was a medical student. And both in my village and in the institution, you would see people in such intense suffering, totally neglected, being untreated. And as a trainee in anesthesiology, I learned that pain could be treated. And all our textbooks had this chapter on nerve blocks though nothing was usually practiced, but there was obviously a way of alleviating pain relief. For some reason that is not a chapter that was usually read or examined on. Unfortunately though I tried rather feebly, I could not get into the field, but eventually when I became a head of a department at the age of 39, I started doing nerve blocks, nerve blocks to relieve pain. I could see only nerves, I could not see the people. I have written about it in the book. I treated a 42 year old college professor, that has successful neurolytic block on him, which means we destroy the nerve with alcohol.

Raj: He was pain free. He asked me, “When should I come again?” I said, “You don’t have to come back, unless you have pain.” He went home and committed suicide that night. And I heard from his cousin that till then he was hoping for a cure. He was sent to me and I was treating pain and saying, “Don’t come back unless you have pain.” That told him that his disease was incurable. The facts needed to be told, but this was like a bombshell. I did not try to see what he felt. So, if there was a single moment, it was that moment. I do feel guilty about that, but I also see that maybe in a way it was inevitable, but he was the person who pointed me to palliative care. Then I started reading about this and Gilly Burn, a British nurse started preaching palliative care all over India. Came across her, got some training in Oxford, several people joined me. And then we started doing it, and the program ran away with us.

Eric: And what year was that?

Raj: Our organization formally was launched in 1993. The man’s death must have been around 1990 or 1991. I can’t remember.

Eric: And is that organization Pallium India? Or is that a different one?

Raj: This was based in Calicut. So, we formed this organization called Pain and Palliative Care Society in the Northern Kerala city of Calicut based in the government medical college. That organization is still one of the most successful organizations in palliative care in India. They run the Institute of Palliative Medicine, which is rather famous and excellent work going on. But when I retired from government service, I left Calicut in 2002. And in 2003, I formed Pallium India with several colleagues with a national agenda, because till then the growth was mostly confined to Kerala and a couple of metropolitan cities. So, we wanted to have some activity spread around the country.

Eric: And at that time, so around 2002, so you had palliative care kind of localized in particular parts of India, what were the big barriers to delivering palliative care outside of those areas or even inside those areas?

Raj: The barriers were fairly typical for most of the world, Eric, at least 84% of the global population, the low and middle income countries have very little palliative care. The reasons are tied to the basically poor healthcare in low and middle income countries. It is not only palliative care. So, what was eventually going on for decades and decades are carried on. Anything new has no room. Treatment of suffering is not a priority. That’s global, Eric. Look at the programs that WHO has. It’s only fairly recently that there are any meaningful programs in palliative care. It was all aimed at prevention and cure.

Eric: Yeah.

Raj: Somehow how modern medicine, especially in the last century or so, got so much of science and technology into it that we learned to look only at diseases. And we are gradually learning to ignore the human beings carrying those diseases. They’re not important.

Alex: I love the story of this book, how it starts so locally and then moves on to the Kerala region and then moves to India. And I’d like to hear from you a little bit more about the struggles you faced in your early days. I mean, just such struggles around corruption in hospitals, access to opioid pain medication, and you almost had to wait until a friend of yours was in power, so you could have access, get permission. I wonder if you could share with our listeners some of the struggles that you faced in those early days and lessons you learned as you were trying to build up this new palliative care practice?

Raj: Thanks. It is the familiar resistance to change, which we all live with. We all go on in a certain path and taking a turn into the woods is threatening. You feel fearful. And if you ask me one major factor, which is preventing access to relief from suffering, which is obvious need, it is fear. We are not brave enough to try and venture some unbeaten track. It’s so much more comfortable to go on doing whatever we have been doing. Now yes, the action started locally. Then we found that we are not an island and we cannot solve problems within that island. And we found, okay, there were legal barriers, which were at another level, and maybe that’s a global issue. We cannot solve problems in one part of the world alone for a long time and that is clearly demonstrated. Whatever happens in USA is so visible. You start talking about the US opioid epidemic and the negative impact is global. We don’t see that Western European countries have been doing some things meaningfully for a much longer period of time, quite safely, but we see the negatives.

Raj: So, it has been a lot of resistance to change. And then maybe like all low and middle income countries, the resources are limited. People who are suffering are not very visible. It’s easier to concentrate on cure, diagnosis, cure. The suffering people are relegated somewhere in the background, totally invisible. One of our most successful authors, Arundhati Roy, said, “There is no such thing as the voiceless. There are only the deliberately silenced or preferably unheard.” The 61 million people globally, who are in serious health related suffering as estimated by the Lancet Commission of 2017, are preferably unheard. They don’t matter. They don’t go to the polling booth and vote. They will not be embarrassing to you because they have no voice, they are suffering too much. So, activity has to be national and global. And we try to do as much as possible, attempting to change laws, change policies. And it’s still after more than a quarter of this injury is still beginning, a very early stage of development.

Eric: I think what was really fascinating about your story too, is It takes a lot of selflessness to make the amount of change that you do. There is along the way, kind of repeated attempts or experiences, where it was a decision to be self interested, accept money from others or have different jobs. And you saw this with others as well, versus being more selfless in the endeavor about your passion, what motivates you. I was wondering, where does that come from?

Raj: I’m not quite sure. I mean, this business of selflessness and selfishness is difficult for me to internalize. Listen, I’m doing it because I enjoy doing it.

Eric: Yeah.

Raj: I’m doing it because I find my life is more meaningful because of it. Someday when I sit back and wonder what was the meaning of my life? So many faces will come in my mind, the people who were suffering and then started smiling. People who came begging for euthanasia and then started enjoying life. It is about life being meaningful. Maybe some people find more meaning in bigger and bigger cars and bigger and bigger mansions, I suppose it’s the way we are made, but I find me my life to be meaningful because of what I do. And I get to see wonderful people like Tom and you.

Eric: Can you describe…

Raj: Anywhere in the world, sorry to jump in, anywhere in the world in palliative care, you come across the most wonderful human beings.

Eric: Yeah.

Raj: This is a bonus that we get.

Eric: Can you describe to me what Pallium India is and its structure? Because it seems very different than what happens here in the US. How palliative care is delivered also seems very volunteer focused, and maybe even decentralized. Can you describe a little bit about what it is?

Raj: Okay. It is a registered charitable trust, and that would be the parallel of what you have as a non-profit entity in USA. You registered with a certain body, have a certain set of bylaws, objectives and plans of action. But remember that here we were focused on needs. The palliative care pioneer in the whole world, Cicely Saunders, she found people in pain and neglected at the end of life. What she called total pain, physical, psychosocial, and spiritual, and she started addressing it. We started addressing the suffering that we saw in front of them. Somehow we were not very limited by definitions. Definitions can be shackles. No, they are.

Eric: Yeah.

Raj: We are not limited by definitions because when we started our first non non-government organization, it was not done only by doctors. If I and six other doctors had got together and done it, I believe we would not have achieved what we did. The fact that there were human beings there, non-professionals, it happened because we were talking about it among friends and they started giving their input. They shared their experiences. And one gentleman Ashok, Ashok was one of the founders of our organization in Calicut, he was a layman who had a wild experience in accompanying people to hospitals because he had a kind heart.

Raj: And he brought home to me, some of the absurdities in what we do. So, though the Lancet Commission brought up the phrase, serious health related suffering only in 2017, I realized that’s what we were treating. We included people with bronchial asthma and many people with paralysis, paraplegia. They would not have fit into the definition of palliative care, the Western WHO definition of palliative care. But I believe the group of people, they’re brave enough to confront the issue, and if we saw health related suffering, we started addressing it.

Eric: Can I ask, because this is often, this still is a debate in the US. Not even a debate anymore, I think one side has won in one side has lost. When we think about palliative care delivered here, like individuals with chronic pain, non-serious illness chronic pain, non-life threatening illness, oftentimes if we get consulted on them, we don’t even see them, may just be discontinued in most palliative care places. What do you think about that?

Raj: That’s one of the high tech medical absurdities that we have developed. We create definitions. In my book I talk about a friend of mine, Sunshine Mugrabi, she has given me permission to share her story and her name. The author of a wonderful book, which is called ‘When My Boyfriend was a Girl’, that was the title of her book. She has demonstrated it. There was a time when she could not get treatment for her pain because she fitted neither under the acute pain slot, not the chronic pain slot, she was in a no man’s land. She went to the most advanced pain treating facility, I accompanied her.

Raj: They would not treat her pain. So, shackled by definitions. And I believe it needs the community. The human beings surround us, the human beings surrounding Tom and I, because we are limited by our professional lens, to come in and say that the Emperor has no clothes. I’m borrowing that from Chris Booth, my friend from Canada, who recently gave his talk, the Emperor has no Clothes. And when we are willing to accept that problem in our system, and then we are willing to face the anger that we sometimes invite when suggesting that the Emperor has no clothes, then doors open up, opportunities emerge.

Raj: So in Kerala, because it started with the involvement of laypeople, we included the community in care because the existing system had no space for this. And the community came in. The ordinary people can see the suffering around them. They’re not limited by definitions. Even this morning one of our doctors was very sad when she reported to me, just before our meeting, she said there was this woman in Tamil Nadu with very severe rheumatoid arthritis, in such severe pain that she was unable to move, and the palliative care centers would not see her because its rheumatoid arthritis. They have nothing to do with that.

Tom: I’m really struck by the way you described this, Raj, because my experience when I went to Pallium was really this kind of liberation of the way we could be thinking about care. And I remember the Pallium is set up, for listeners at home, there’s a hospital that takes care of people who are imminently dying or need immediate care. And then there are a number of groups that go out in vans and cars and go out into the surrounding community of Kerala to provide care for patients who are in their homes. And the wide range of folks that we would care for was really extraordinary to me. It was wonderful for me, as a rehab doctor, to be able to see patients with spinal cord injuries and how they were living in their homes. But it was so different, as you said, from what we might see here in the states because those just aren’t patients that we would see within our own domain of practice, which we tend to, as Dr. Raj was saying, tend to narrow that down.

Tom: And it was magnificent and also very humbling to see the circumstances that people were trying to navigate, again some with the spinal cord injury. There aren’t a lot of sidewalks, there aren’t a lot of places for people to get into a wheelchair and easily get from one spot to another. So, often they end up living at home and not having much opportunity to get out. So, it seems like that’s the next level of where folks would go. But I was really struck, Raj, by the number of volunteers that you had in the group too. And you mentioned community earlier, it seems like there is an ethos of contributing to the care of one another that was really powerful. It is very powerful in Kerala. Can you talk about that a little bit?

Raj: Tom, yes. You said people who are forced to live in their homes because they’re paraplegics, I would use the phrase, imprisoned inside four walls. The only time a person with paraplegia gets out is when he’s carried in the vehicle to go to the hospital, that’s the ordinary routine. Yes. So, the community comes in. Tom, I believe the only thing necessary is to open the door to them. Can you think of any community anywhere in the world, without any people with compassion? They are there. I see them in your hospices, Tom. I see them sometimes occupying the reception desk or driving people around. Listen, they’re allowed only to drive people around. They’re not allowed to do anything else because the system is rigid. Oh, I know there are the legal objections, medical legal issues. If they say the wrong thing and somebody’s sues you, what will you do?

Raj: But I honestly believe they are there, everywhere. And it’s a question of, we keeping the doors locked. They’re not allowed to come in. To a large extent in Kerala, we were helped because compared to the rest of the country, literacy is higher and people read newspapers so we could reach more people. But then if they do not read the newspaper, you find out how do they communicate? Okay. They watch the television or don’t you think the community engagement in general activities. But from what we read, it was much better a century back, is in communities manage their own affairs. We know this though, in 1978, the world got together for public health, global nations got together and came out with Alma Ala Declaration of 1978 which asked all member countries to partner with the community in healthcare delivery.

Raj: 40 years later in 2018, they got together at Astana, the then capital of Kazakhstan, and brought out another resolution, which ask member countries to give control over healthcare to the community. We know that this is necessary in theory, we know that health is not only absence of disease, but physical, social, and mental wellbeing. We know that a department of healthcare cannot give it. Healthcare industry cannot do it. We need irrigation, we need sanitation, we need food, we need everything and the community will put it all together. Whereas, we are limited by the departments. Sorry, I got carried away. But I think we are going there tomorrow. We will see reason and the community participation will improve.

Alex: On that note about community, there’s also a story in here and several stories about social pain, for those who have no community. And I’m thinking in particular of one chapter called ‘No One Should Die Alone’. And I wonder if you could tell this story of Karthy Chechi [term of endearment and respect for an elder]. The chapter starts out, “When will you come next?” 72 year old Karthy Chechi asked me.

Raj: Thank you, Alex. I still remember the woman. I still remember how she would hug, not only me, everyone who was near her and would not let go. She needed human touch. And she herself had to be in a sort of destitutes’ home where we were giving some sort of palliative care, as you know. She was there because she had a daughter who got married to a person who unfortunately turned out to be an alcoholic. And he would demand money from the wife and would beat her up and beat up the children. So, she was in a pathetic stage and she had no way of coming and seeing the mother because she had to feed the children from her earnings. She had no money for a bus fare. And we actually found that when she was really terminally ill, she had a cancer that was potentially curable if treated early, it was not. So, by the time we saw her, it was incurable.

Alex: This is the mother now, has a cancer that’s incurable. And her daughter can’t come visit her because she doesn’t have money for bus fare and her husband’s an alcoholic, demanding money from her and she has to feed her own children.

Raj: Thank you. And we had to send her the money for her bus fare and also to pay the neighbor, to look after the children for a week or two. And she came back and whenever I went to Karthy Chechi, I would see the daughter sitting on the bed, always a hand on the mother. The love that they shared, my God, that was so beautiful. But maybe a question I would like to ask you…

Alex: Please.

Raj: … Do you think that kind of loneliness is confined to our low and middle countries?

Alex: Absolutely not. Absolutely not.

Raj: Loneliness is one of the most dreaded things for anyone. And when I visit your hospices, I see a lot of lonely people and I understand that there are also a lot of lonely elders living in the cottages outside the hospice. And if only the system could organize some of the lonely people outside to spend some time with some of the lonely people inside, some friendship, some community. We tend to look too much at blood pressure, oxygen, saturation, and also nutrition, but no nutrition for the heart.

Tom: You talk about that chapter of ‘No One Dies Alone’ and no one should die alone. And there is the program here in the states called ‘No One Dies Alone’ that will match volunteers to come and sit with people who are dying in the hospital. And it’s a lovely thing. It’s a really wonderful way to make sure that folks are not lonely in those last moments of their lives, but it does beg the question why aren’t we thinking about that earlier? Does it have to be only at the end of life?

Tom: I have another question about the book. The book starts with the story of your grandfather with whom you lived, and there’s obviously a lot of family connection that you talk about in your patients, but also for yourself. And I’ll share that my own relationship with my father, who was a doctor, was a complicated one. And I don’t think he would understand what I’m doing right now. I’m not sure he would really approve. And I know that there were ways that you’re, you and I’ve talked about this before, that your relationship with your father weaves through the book and had an impact on the way you think about it. Can you say more about how you think your father shows up in you and what that relationship meant in terms of the work that you do now?

Raj: Tom, I was a third child, third among four. I’ve heard talk about in the family circles that I was an inconvenient child born as a third son, when my dad desperately wanted a girl. These are things that you hear as some kind of rumors. I was sent away when my little daughter was born to live with my grandparents. At that time, or until I was in my thirties, I did not think much about it. I never developed a close relationship with my father, though I was living with him much later for a long time.

Raj: And then when I became a father myself, in my thirties, I sensed what a father feels for the child. The intense sense of love and the protectiveness that you get, the pleasure that you get when you have a tiny arm going around your neck as you carry the child, I felt that and then I started feeling angry. I believe that it was my mistake that I never brought the anger out. I always concealed it, never let it out, looked after him. Looked after him, but never giving him a hug. Looked after him about his illnesses, medications, et cetera.

Raj: I never bothered to hear his side of the story. I was only listening to rumors. Maybe he had his own reasons. There was a necessity to send the child away because the daughter had to be looked after by my mother who was ailing also. So, I carry that guilt and that guilt makes me concentrate so much on relationships, in giving care to people. Though people build these huge concrete walls between husband and wife, mother and son, father and daughter, these emotional walls, they’re easy to break down. If there’s a facilitator, somebody like us, we find out what the real problems are. It doesn’t take much. It takes the message from your eye that I truly care for you. You sit there, you allow silence. And then the stories come out and that helps us to affect reconciliations.

Raj: So, my experience still leaves me guilty, but that has helped me to ensure that human relationships are given attention in the care of a patient, not only giving morphine and an antibiotic, but also going into relationships. In our team in Trivandrum we have eight doctors now. We have 13 social workers, many more social workers than doctors. Even if the doctors do not get into all these, somebody goes into those problems. And I believe most of the other problems that I talked about are specific to our 84% of the world, the low and middle income world, but maybe this is more of a problem for high income world or the elders.

Alex: Last question for me, and I know we have other questions we want to get to about medical tourism and other how people could get involved, my last question is about how things are in India now. And I particularly want to speak to the moment with the COVID pandemic and I know that India has been deeply affected as has the United States in many parts of the world. We had staff in our group who lost loved ones in India, and couldn’t go back to see them for a period of time due to travel restrictions. And it sounds like from what I read in the papers that the amount of suffering and loss and death in India is vastly under-counted compared to the reality of what happened last year. I wonder if you could speak to the moment where things stand with palliative care in general in India and how the COVID pandemic relates to contemporary times?

Raj: Really perceptive of you to ask that, Alex, thank you. 90% of Indians do not have access even to basic pain relief, leave alone comprehensive pain relief, comprehensive palliative care. Less than 4% is the figure that we got, anything can be less than four, including one percent. We just don’t know, it’s bad. The COVID, well, we now started moving out. We started forgetting that it all happened, but including my extended family, there are these huge, huge raw wounds.

Raj: The wounds from COVID taking away a loved one after six hours of fever and in an ambulance, never to be seen again. In the first few months, not even a sight of the face again. And then a zip coming down and a bloated up face exposed before it is closed again, no time for grieving, no time for healing, no extended family support, is dreadful. But that does not get reported, COVID deaths numbers are reported. The number of people who go into depression in the pathological grief is not reported. Grief and depression do not show up on MRI scans. And if they’re not visible in an image, it doesn’t exist. There is this huge emotional burden left in the population all over the world, which is unseen, unheard. To quote Arundhati Roy again, “preferably unheard.”

Eric: Now I’m going to quote you because I know we’re running out of time, but in the, I think it was the very last chapter or second to last chapter, it was a quote from Don Berwick too, but it ends with, “Either engage or assist the harm.” And for our listeners who want to engage, what are the things that we can do to help countries like yours, Pallium India? How can we engage?

Raj: Thank you. Don Berwick said, “Being silent is not an option because silence is now political. If we are silent, we are assisting the harm, we have to engage.” And how we engage is recognize that no human can be an island that we are part of a community. And in this case, I am talking about the global community. We all have a joint future. So, maybe alleviating somebody’s loneliness and distrust distress has to be an essential part of our activity. And for those who truly believe that we are one global community, please help us in low and middle income countries. Our people ask for so little and still it’s a shame that so much of needless suffering…stays here.

Eric: And I remember in the book, there was one team, their entire medication budget, the funding is like $600 a year that they get for pain. I mean, at the very simple end, if we did want to donate to help, where do we go to? Do we go to Pallium India website? Or…

Raj: Please go to Pallium India website and donate. Pallium India is also registered as an entity in New York with the national reach. It’s called Pallium India Inc. So, you can see the website of palliumindia.org or palliumindiausa.org. If you donate through palliumindiausa.org, the organization gives the proceeds to us and the donor gets the income tax exemption by that 501(c) or whatever. So, please do that. And we are desperately trying to build our own home because we have been moving from place to place all these years. We are in our ninth location now and we have to pay an enormous amount of public money as rent. We are trying to build a campaign to build our own home and that’s part of our succession plan, seeing how young I am. So, we are trying to build that, build strong systems in place…

Eric: Yeah.

Raj: … That the work will carry on. Fortunately, we have a brilliant team, amazing team working together at it.

Eric: Tom, you get the last question.

Tom: Yeah. There’s so many things that are moving through my heart and head right now. I guess when you look at where you see palliative care in the States, I know you have a lot of connections here and in India, where should we be going? Where is our next direction in the States, as you see it, Raj?

Raj: Tom, it’ll be presumptive of me to try to advise about this because I have not even worked in your place, but I have seen my friends not enjoying practicing medicine anymore. I have seen a several of them. I wonder why? I wonder why we have created a system where terror reigns? You are always looking at the legal aspect of it. You’re not looking at the human suffering. We are protecting ourselves with so many armors, I don’t know why. I honestly believe that if we have a program, for anywhere in the world, which brings the community into healthcare, I think the community will find the answers.

Eric: Well, that was a lovely way to end this podcast. Raj, we want to thank you very much for joining us. But before we leave, maybe we can hear a little bit more of ‘Walk with the Weary’.

Alex: (Singing).

Eric: Tom, Raj, thank you very much for joining us for this podcast.

Eric: Very much appreciate it.

Raj: Thank you.

Tom: Thanks for having us.

Raj: Beautiful ending. Thank you.