Care beyond cure, touch beyond tech

The old man burst into tears when the doctor held his hand to check his pulse. “Are you in pain?” the doctor asked. “No, just that this is the first time someone has touched me in the last one year,” the old man said.

The old man had two sons, both working abroad. He had lost his wife during the pandemic. All alone, he used to come to the hospital for a checkup every three months or so. This was his first visit after a long gap.

This real incident came up during a conversation between Dr Priyadarshini Kulkarni and Dr Uday Nirgudkar at a recent Swayam Talk session on palliative care.

Compassionate touch

Touch. It is neither medicine, nor surgery. Yet, neither can truly heal and ease distress, except with the support of that compassionate touch.

Palliative care, a relatively recent introduction into the medical curriculum in India, has many definitions and explanations. Many, doctors included, would rather not talk about it because it is equated with imminent death, with failure of medicine as it were.

However, for those who understand all that palliative care stands for, it is about caring touch—physical, emotional, social and spiritual. Those are the dimensions that make life complete. And palliative care touches all those facets, with compassion.

When Dr Priyadarshini Kulkarni was studying in medical college, she received a letter from a friend who had suffered kidney failure and had to undergo regular dialyses. “Everything was fine. My elder siblings are fine. Why did this happen to me? At an age when I should be taking care of them, my father donated his kidney for me and my mother has to look after me because I am helpless at home all the time. I feel so guilty. One day, when you become a big doctor, please do something to solve problems of people like me.”

The letter was one of the major factors that prompted Dr Kulkarni to move from anaesthesiology to palliative care. Because it was very evident to her that there was a desperate need for that palliative touch.

Patient before prescription

When the time comes, does everyone accept the inevitable and focus on painless comfort instead of excruciating attempts at prolonging life? Are doctors taught this approach?

This is what Dr Rachel Clarke writes in her book, Dear Life: A Doctor’s Story of Love, Loss and Consolation, about what and how she was taught in medical school.
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“In microcosm, the manner in which I was taught CPR represented the rest of medical school. I was force-fed facts about diseases, not people. Conspicuous by their absence were, ironically, my future patients. I may have filled my brain to bursting with names, numbers, drugs and diagnoses, but I was taught next to nothing about the muddled, uncertain, inconsistent, illogical, forgetful, fearful, frightened, doubtful, real-life flesh-and-blood people who, just like me, inhabited a nuanced world of endlessly shifting grey, not the black-and-white certainties of my medical bookshelves…. Which meant, as I approached my first day as a qualified doctor, I had no idea how little I knew.

“A fundamental challenge for doctors, therefore, is distinguishing those who can be saved from those in whom the cessation of a heartbeat is the irreversible point of death. Yet at no point in medical school did anyone discuss with us this vital and difficult task. Nor were we taught how to ensure a patient’s wishes are at the forefront of decisions concerning CPR. Nor, most fundamentally, how to conduct these delicate, all-important conversations with patients and their families. The focus was exclusively on the doing.”
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As Dr Priyadarshini Kulkarni explained during the interview, it takes time for members of a palliative care team to come to terms with what they do. It can be very disturbing, especially when many families and doctors would rather maintain a conspiracy of silence than gently let the counsellor share the reality with the patient. Professionally, they are expected to practise “attached detachment”. It is easier said than done, even after years.

A hand to hold

Dr Mazda Turel, renowned neurosurgeon avers everyone needs and deserves that compassionate touch, including doctors and surgeons.

“A wound heals faster when there’s someone to change the dressing with care, even if they use the wrong tape. The heart beats steadier when it recognizes another voice nearby. And patients who have someone to hold their hand recover sooner than those who have only hospital linen for company.

“We are creatures wired for connection. When that connection breaks, so do we. Machines may monitor pulse, pressure, and oxygen, but they can’t measure hope. Hope isn’t quantifiable. It’s given quietly, in the way a hand rests on another, or in a voice that whispers, ‘I’m here.’

“Technology may let us replace joints, valves, and vertebrae, but it cannot replace the presence of another human being. Machines heal the body; only people heal the soul.

“We are all caretakers, whether we admit it or not. The question is: When the time comes, will we be the ones holding a hand, or the ones waiting for someone to hold ours?”
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Today, there is impersonal technology all around us. Noise, anger, hatred and distance rule our existence. It is time palliative care permeated all aspects of our life, of parenting, of schooling. Maybe we should call it compassionate care. The name does not matter. The touch does. And it must come from within.

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Sources:
1. Swayam Talks session (in Marathi): https://www.youtube.com/watch?v=Pvy6l4oic4U.
​2. Dear Life: A Doctor’s Story of Love, Loss and Consolation, book authored by Dr Rachel Clarke, published by Little, Brown.
3. Post by Dr Mazda Turel:  https://mazdaturel.com/the-surgical-loneliness/.
4. Images rendered by AI.