Death at my doorstep

– Dr Sharada Vinod Kutty, New Delhi

I’ve been a medical student since 2004. I remember how I would run from the wards to the outpatient departments to the medical camps and so on. I was like a sponge trying to imbibe all the information around me. I particularly loved my internship. It was a year of various exposures and a year of finally being partly responsible for patients on daily rounds.

I remember my first brush with a patient’s death; it was during my paediatrics rotation, as an intern. The baby was a few months old, had a genetic condition with complications which had progressed rapidly. I remember staying back to check on the patient, even on those days when I was not on call. I spent time with the parents, and a lot of time at the patient’s bedside. In spite of everything, the child died. I remember being devastated. I hid in the shadows and cried. My heart went out to the young parents and I was angry at the unfairness of it all.

I lost various patients during the rest of my internship and it never failed to shake me up. I was young and my responses mirrored my youthful naiveté. Back then I was still a believer, and I couldn’t understand god’s ways.

Twenty years hence, I’ve completed my MD and my DM. I have treated several patients, have supervised my juniors and taught many students. I have seen several deaths. There were deaths due to the unrelenting march of a disease, deaths due to advancing age, deaths due to lack of resources, so on and so forth. No longer did I shed tears or stop to recover. I just kept doing my job, and accepted that just like life, death wasn’t fair. I stopped believing in ‘the ways of the god’.

A few months ago, someone in my immediate family came to me with some “nonspecific” complaints. There was a little bit of this and that. It was not overtly significant. I got some tests and they were largely okay. I subsequently made a few changes in medications, got a few consults and we seemed good to go.

A few days later, the person came to me and showed me their legs. In just a couple of days, their feet had swollen up and the tummy was distended. I knew then, that things were not fine. I got an ultrasound and few other tests organized. They went for the tests and shortly thereafter, I received a call from the radiologist. My family member, let me call them ‘X’, had tumour like lesions in their liver. It looked like cancer.

I was startled yes, but I did not falter. I did not cry. I did what I was trained to do. I started planning the evaluation, it’s management and began considered prognostic implications.

‘X’ came home and I gathered the family. We planned further tests. We got a PET CT and found that it was indeed cancer and it was a stage 4 disease. I sat down the family and I broke the bad news. I did not falter and I did not cry. I was honest with respect to the course of illness and the expected prognosis. I refused to give them false hope, even though I was tempted on multiple occasions.

For the next two months, I was constantly restive. I made lists of things to do. I made WhatsApp groups for giving medical instructions to the family. I was constantly reading up and trying to figure out the best course of action.

While I was surrounded by my family, yet, in this, I was completely alone. The family trusted me implicitly, but with that trust came huge responsibility. I was plagued with self-doubt. What if the family wanted more? I knew that the prognosis was dismal and I kept re-iterating this during all discussions.  I saw my family vacillate between the various stages of grief.

When ‘X’ was still coherent, I asked them what they would want for themselves, treatment wise. They were strong willed and clear headed. They told me that they were open to treatment. However, they wanted their final days to be free of pain and filled with dignity. I acquiesced. No matter what anyone else thought, ‘X’ had the right to bodily autonomy.

As decided, we initiated chemotherapy. The discomfort was significant. It was quite bad after the second cycle. There were oral ulcers, secondary infections and an overall worsening of ‘X’s general condition.

The family cried and appealed to me to make the discomfort go away. I remained clinical and refused to get emotional.

I was clinical to a fault. I set up a white board in the room. I maintained my medical logs there. ‘X’ needed fluid removal from their abdomen, but was too weak to go to the hospital. I would manage that at home. Not once did my hand shake when I plunged the needle into the skin. I tried my best to alleviate the discomfort. The care was all supportive.

The last few days were pure torture, more so for ‘X’ of course. We could see the discomfort and the faltering of their body. We wished India had a more liberal stance towards terminal sedation.

We continued all possible supportive care until ‘X’ finally passed away, in their sleep. I am not sure about the “peaceful” part. I had seen them breathless and in pain, but yes, the suffering was finally done.

As an atheist, the rites and rituals didn’t matter to me. As far as I was concerned, ‘X’ was no more. It was the end of an era and our lives would be changed irrevocably.

I watched the lifeless body and I did not cry. I went to white board and wiped it clean. That seemed the rational thing to me.

I informed all those involved in ‘X’s clinical care that they were no more.

I could not sleep, just like I had not slept ever since the first ultrasound. My mind had been constantly in overdrive. I had been imaging plans A-Z and preparing for all sorts of contingency. I had been constantly vigilant and unable to relax. I had continued to work with my patients and at my hospital, while I managed ‘X’ at home. People asked me how I was and I rattled out the clinical situation.

Now that it’s over, all I feel is a deep void. I am no longer subsumed with the planning and coordination. Yet, I remain vigilant and unable to sleep. If I do sleep, I search for ‘X’ in my dreams and nightmares. I wander around without purpose, wondering, whether I could have done something differently. This is not grief, but I do hope I am at one of the stages.

I wish I could find a way to surpass the numbness that has served me well over the years.

I wish I could just falter a bit. I wish I could allow me some grief. I hope that writing these words will finally provide me some peace.

About the Author:

Dr Sharada Vinod Kutty is Consultant – Internist and Pulmonologist at Karuna Hospital, New Delhi. She was introduced to the concept of palliative medicine, while working at AIIMS New Delhi.

She is passionate about palliative care with specific interest in end of life care in chronic lung diseases and looks forward to working in the palliative care community.

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