About six months ago, Yash, an artiste from the Shankar Mahadevan Academy composed a new theme song for Pallium India, a charitable trust in Kerala that strives to alleviate health-related suffering across India for anyone with a serious or chronic illness, and advocates for the gold standard where palliative care is universal and integrated into all medical treatment. Rendered soulfully by a group of Pallium India’s young social workers, the song, with lyrics by Pallium India’s Smriti Rana begins:
“To walk with the weary
To take away pain
To wipe away tears
Bring light through the rain…”
Walk with the weary: Lessons in humanity in health care is also the title of Dr. M.R. Rajagopal’s new book which describes shared experiences from his “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.”
Father of Palliative Care
Widely known as the Father of Palliative Care in India, Dr. Rajagopal is an internationally known Palliative Care physician and Chairman of Pallium India. He has been variously described as Kerala’s medical messiah, a legendary humanitarian, healer and thought-leader, and arguably the most-decorated doctor in the world. He has received numerous awards and honors worldwide in recognition of his pioneering work in promoting palliative care and relief from suffering across India. These include the Padma Shri by the Government of India in 2018, and a nomination for the Nobel Peace Prize.
Dr. Rajagopal was in the Bay Area recently to spend time with family, meet people, and conduct a few book-reading events. I had the privilege of sitting down with him for an extended conversation.
Drilling Through A Skull
I began by asking what drove him to take on palliative care as his life’s calling. Dr. Rajagopal trained and practiced as an anesthesiologist for many years. “I did not even know the words palliative care,” he began. “From my medical school days, I saw a lot of pain in patients that was left totally untreated. Then, I noticed that people tended to be philosophical about other peoples’ pain.”
“A patient in the last few weeks of life told me that his constant pain felt as though somebody was drilling through his skull. Can you imagine having to put up with that kind of pain for even one minute?”
Dr. Rajagopal began to treat people’s pain. “Those people taught me that they are not made of just nerves and pain, they have other elements of suffering, they have other emotions. I started listening to them and learning from their experiences, and I eventually discovered Palliative Care.”
Growth of Palliative Care in Kerala
In the 1980s, Dr. Rajagopal started looking around for ways to better treat all of this ‘other’ suffering. He was inspired by the outstanding work of Gilly Burn, a British nurse who traveled the length and breadth of India, introducing palliative care, finding pioneers, and getting them trained and empowering them for palliative care.
He was Professor and Head of Anesthesiology in Calicut Medical College in 1993 when he co-founded the Pain and Palliative Care Society. The Society’s creation of a palliative-care delivery system tailored to the Indian cultural and social background was recognized by the World Health Organization and designated a WHO demonstration project in 1995. “We started by providing palliative care in the northern seven districts of Kerala,” Dr. Rajagopal said. “In the next ten years, growth was phenomenal. Palliative care became a known entity throughout Kerala, and became quite popular too.”
Palliative Care Across India
In 2003, when Dr. Rajagopal co-founded Pallium India, Palliative care was only sparsely available in the rest of India, limited primarily to a few metropolitan areas. He founded the organization with a vision to ensure access to palliative care that was integrated seamlessly with the delivery of health care throughout the country. Over the past 20 years, Pallium India has played a significant role in many important advances towards this vision. It has inspired the creation of the Government of India’s National Program for Palliative Care. Palliative care is also included in medical and nursing curricula across India. It is now part of the National Health Policy.
Pallium India has also lobbied for a national policy enabling the prescription and controlled use of morphine for pain relief in palliative and hospice care.
Community Engagement Is Vital
“What five things you would like our reader to know?” I asked Dr. Rajagopal. He remained silent for a couple of minutes, making some notes on his pad. Then, he spoke:
First, healthcare should be a partnership between the community and professionals delivering that care. True care cannot be provided without engagement and shared decision making. Community engagement and awareness are vital. Health care needs to be preventive, promotive, curative, rehabilitative and palliative.
Malady Of Loneliness
Next, beyond awareness, we need active community participation to control costs that are spiraling out of control, and, equally important, to address an unseen, growing health issue: the malady of loneliness. We have created a brave new world of young healthy people; the world belongs to them as the elderly and ailing are marginalized. We can address such problems only by community participation as demonstrated in Kerala, and by the Compassionate Communities movement in the UK, Canada and Australia.
Third, we must apply a balanced approach to advocate for controlled availability and use of opioid medications to provide relief for seriously ill people in severe pain. We can follow successful models from Kerala and Uganda.
Fourth, we should encourage people in developed countries like the US to support those suffering in lower and middle-income countries through knowledge transfer and financial support. Professionals could share their expertise through educational programs and provide assistance in building strategies. “For the price of a latté in the US, we can provide pain relief to an individual for an entire day in India,” he added.
Family Back Home
Finally, Dr. Rajagopal directly addressed those in our Indian diaspora who agonize helplessly and are ridden with guilt when a loved one falls seriously ill back home and suffers needlessly with futile treatments and interventions. “I am told by palliative and hospice care professionals in the US that the Indian community is more resistant to the idea of palliative care. This could well be related to our stronger family structure. In such instances, please ask your readers to allow us, Pallium India, to connect them with the best possible service for their loved one in India,” he pleaded. “If palliative care is not available close by, we can offer telehealth consultations.”
Love at the End of Life
As we wound up our conversation, Dr. Rajagopal gave me an eye-opening perspective on the love for a dying relative. “Many of us have a selfish kind of love. How can I live without my mother? I need her. I cannot let her go.” In the process, we push for useless and inappropriate treatment that increases and prolongs suffering. “A deeper, more humane love is to recognize the suffering and accept the incurability; accept the inevitability of death. Compassionate care facilitates quality of life for as long as possible, and then facilitates quality of death – a good death, that is free of suffering as much as possible, while receiving and giving love.”
Gently Shaking the World
Dr. Rajagopal’s remarkable achievements are documented in the 2017 film narrated by David Suchet: Hippocratic: 18 experiments at gently shaking the world . The filmmakers describe him as a small man with a big dream, and a spiritual leader of ethical medicine. He may be small in size, but Dr. Rajagopal towers over obstacles and overcomes them, one determined step, and one gentle shake at a time. He is a visionary who is yet to leave his indelible imprint on the lives of millions more.
Pallium India’s theme song ends with a poetic capture of Dr. Rajagopal’s vision:
“When the night is dark
And they walk alone
Let us carry the light
And walk them home.”