Walking with the Weary- caring for people at the end of life’s journey
Rajagopal lived a “decades-long palliative care journey, walking with people suffering from life limiting illnesses, and lessons learned on how to befriend life until the very end, with compassionate care on one’s side.”
Dr Rajagopal is the director of the WHO Collaborating Center for Policy and Training on Access to Pain Relief at Trivandrum Institute of Palliative Sciences (TIPS) and the founder-chairman of “Pallium India”, a charitable trust. His initiative led to the development of a Government policy on Palliative Care in the state of Kerala in 2008, its revision in 2019 and to a National Palliative Care Strategy (National Program for Palliative Care) for India in 2012.
He received the award for excellence in pain management at Montreal, Canada from the International Association for Study of Pain (IASP) in 2009 and Alison Des Forges award for ‘extraordinary activism’ at Los Angeles from Human Rights Watch in 2014. In 2017, he was named one of the 30 global visionaries in palliative care by American Academy for Hospice and Palliative Medicine.
In 2017, a documentary film titled “Hippocratic: 18 experiments in gently shaking the world” based on Dr. Rajagopal’s contributions to palliative care was released by Moonshine Agency, Australia (http://hippocraticfilm.com/).
In 2018, the Government of India conferred on him “Padmashree”, it’s third highest civilian award.
In 2022, he published his memoirs, ‘Walk with the Weary’ which attracted reviews around the world, including British Medical Journal and the Journal of Palliative Medicine. Dr Eric Krakauer, associate professor of internal medicine at Harvard wrote, “It is the best writing on palliative care that I have read and one of the best in medicine”. Dr Soumya Swaminathan, former chief scientist at WHO wrote that the book must be in undergraduate medical and nursing curriculum.
Watch the video, listen to the podcast or read the interview below
You started off as an anaesthesiologist but you’ve finished up in a very different world altogether…
Rajagopal: It’s not all that different really. Think of all medical specialities, only two of them were created to relieve suffering, everything else is concentrated on diseases, cure, microbes, tumours. Not Anaesthesiology, not Palliative Medicine, they are very related. Anaesthesiology began primarily to relieve pain during surgery and Palliative Care relieves pain and suffering throughout life.
DMacA: One of your big interests now is trying to make people aware of Palliative Care throughout the world, 61 million people…
Raj: I would focus on 51 million of those 61 million. For the 10 million, mostly in Euro- American countries, it is vastly different. The kind of treatment people there get, the kind of suffering that they have, is very different. Whereas, those 51million go through such suffering that it is unbelievable.
I was looking at some literature and, you know, all our guidelines and publications, treatment schedules, and everything, are dependent on available evidence. But, 84% of people live in lower and middle income countries and, in the field of palliative care, the relevant scientific publications amount to about 5.5%. Everything is from the other 15% of the world producing 94.5% of the publications, and all the processes, treatment, everything, is dependent on that evidence, so much so that sometimes I believe we destroy health by providing health care.
That’s a big statement but I can take responsibility for that statement and I am happy to explain why I think so: Health is officially defined as physical, social, and mental well-being. Health is not defined as absence of disease or infirmity. In fact, the definition says that it is not only absence of disease or infirmity but physical social and mental wellbeing.
Why do I say that healthcare does not provide health care? Leave aside physical, mental, and social wellbeing, even physical suffering is not relieved by healthcare systems in low and middle income countries. In India it is estimated that less than 4% of the people get even basic pain relief. Imagine the surgeon cutting your upper abdomen or chest with no pain relief or nowhere near adequate pain relief after surgery! If you get a fracture, imagine what life would be without pain relief. And then imagine cancer, where pain can be beyond your imagination. Think of someone who has been an asthmatic all their life eventually coming to his or her end of life- that feeling of not being able to take in air. Imagine not being properly treated for that. You are treated for the disease, not for the breathlessness. But that’s not improving health.
Let me point out two others things. Firstly, 55 million Indians are pushed below the poverty line by catastrophic health expenditure. More than 4% of our population in one year. The medical science that we learn from your country we apply here, but what about the health, physical, social, and mental well-being. What a joke. Destroyed.
Very recently, three oncologists published a paper studying their patients in three states in India. 52% of people with cancer are subjected to catastrophic health expenditure. Healthcare destroying Health, that’s what I meant.
My final point… What about the people who are dying? In your country, 90% of people on life support systems are taken off life support systems if treatment is considered futile and then they are given palliative care to allow them to die like human beings. You will find this hard to believe but, in our country, where we can barely afford to do that things like that, once patients are on life support systems, 70% are continued on life support systems until the heart stops. The other 30% may be taken off life support systems and sent home with a bag for the family member to squeeze. Cruelty, absolute cruelty, and torture of the dying.
But, this is what happens when we blindly apply Western medicine in our context. So, my first point was that suffering is not treated, and my second point is that financial and physical suffering and mental suffering are added by irrational end of life care.
“The medical science that we learn from your country we apply here, but what about the health, physical, social, and mental well-being… this is what happens when we blindly apply Western medicine in our context.”
The Lancet Commission on Palliative Care and Pain relief; findings recommendations and future directions
Lancet Commission on the Value of Death
DMacA: So, for the 51 million people in low and middle income countries what can we do?
RAJ: We are not visible. We are not heard. I think that is the basic requirement.
Two Lancet commission reports. One was in 2017, The Lancet commission report on access to palliative care. (The Lancet Commission on Palliative Care and Pain Relief— findings, recommendations, and future directions) When it was published Richard Horton, the editor of the Lancet group, said that “medicine will never be the same again”. But that was in a scientific publication which is very much read and reported in the palliative care ecosystem. But it needs to go out to the people.
The second is Richard Smith’s and Libby Sollnow’s Lancet commission report on the value of death. (Report of the Lancet Commission on the Value of Death: bringing death back into life) and one major recommendation there is that we need death literacy. Over two or three generations we have become death illiterate. Once we switch from joint families to nuclear families, death became a stranger to be feared and avoided. We have to bring death back as a part of life, the inevitable consequence of life, helping people to go through that phase with as much of dignity and comfort as possible, receiving love. Giving love. That’s precisely what medicine is preventing now when they shut people up in intensive care units and submit them to rigorous imprisonment and torture till death.
DMacA: You explore these in your book. I love the title of your book…
Raj: I thought I had a story to tell. I had a story to tell, particularly to healthcare students but also to the person on the street. So, I started putting down my thoughts and I thought I had a message to convey. And, that’s why I came to write the book.
DMacA: “Walk with the Weary” talks very lovingly about palliative care and caring for those who are very seriously ill.
RAJ: When someone has an incurable disease and the hospital thinks that there is nothing more they can do about it, if they are not seen as people from whom money can be squeezed out by the medical system, they will be told there is nothing more we can do. ‘Take her. Go home.’ That is rejection. That is total rejection. That doctor has treated her for 30 years and finally, when the person needs that doctor most, she is told ‘there is nothing more that I can do, you go home’. That’s a time of great suffering and when you are most afraid and need a hand to hold.
If we accept that medical professionals are more than professionals, that they are also human beings, if we accept that, then we will feel the need to hold that hand and walk with the person in the direction that the person wants to travel, not in the direction that medical science tells the person to travel so that he or she can live for 3 days more. If the person says, I really don’t care about that, but ‘before I go I do want to visit this temple’ or ‘I do not want to die here, take me home,’ the travel may be risky but that travel is so important. But he can go on that journey only if we make her/him physically comfortable; take away the pain, take away the breathlessness, those things that cloud the mind and do not permit people to live as human beings. Take those away but walk with that person as long as the person wants their hand held.
“When someone has an incurable disease and the hospital thinks that there is nothing more they can do about it …that’s a time of great suffering and when you are most afraid and need a hand to hold”
The book: Walk with the Weary: Lessons in humanity in health care. M R Rajagopal
DMacA: In another interview you described another condition, the malady of loneliness. What does that mean?
Raj: I have not worked in a Euro-American country except for a few weeks of training or something like that, but what little I see tells me, that the direction that we are also going to, is one of a great malady of loneliness about which there is no chapter in any medical textbook. There is no chapter on dignity, there is no chapter on loneliness, because dignity cannot be measured on a dignity-meter, loneliness cannot be seen on an MRI scan, and it cannot be treated expensively.
I suspect that in your country that malady could be even more than in my country. Here, at least the poor can die with a hand held, a kiss on the cheek, and a few drops of water poured down the throat. Whereas, in our country the rich people do not get that. They get only a suction catheter down a tube. I suspect that there’s a lot of loneliness out there. I have seen in hospices in the west, with endless rows of lonely people lying there. That’s sad. That’s not really human. We are not made to be lonely. We are social beings, we need company, we need our hand held, we need a finger to wipe away the tears.
This is the trailer to the film “Hippocratic”
“In a gentle way, you can shake the world”
The PadmaShri Award is one of the highest civilian honours of India and seeks to recognize achievement in all fields of activities or disciplines where an element of public service is involved.
DMacA: Now I know you’re a very modest man but I’d like to finish up by asking you about the many awards you’ve received, your nomination for a Nobel Peace Prize, tell me about that experience.
RAJ: A difficult question. It’s a question of a fight with one’s ego. I was very happy to get each and every one of them. Mike Hill and Sue Collins, a couple from Australia created a movie called “The Hippocratic”, and that was great for my ego of course, but they also had a message to convey. No doubt, a huge message. And the India Government’s, Padma Shri which is a national award, opened doors for me. Being a Padma Shri award holder does open doors, but in addition, I feel very proud to carry those awards. Thank you for asking the question.
“Here, at least the poor can die with a hand held, a kiss on the cheek, and a few drops of water poured down the throat… I have seen in hospices in the west, with endless rows of lonely people lying there. That’s sad.”
But, honestly, the biggest award that I got… I have a photograph of a child, with a cancer in the kidney, giving me a kiss a couple of days before she died. Someday, when I am lying in a bed, I suspect that those awards will not mean so much but, that kiss would still be precious.
DMacA: Thank you very much for sharing those thoughts. You’ve left us with a legacy of reflection. Thank you.
