MY EXPERIENCES IN PALLIATIVE CARE - THE MOST HUMANE FACE OF A NOBLE PROFESSION (Part 1 of 2)
Updated: Dec 6, 2021
Discussions around Quality of Life are appropriately common place. However, we seldom talk about Quality of Death. Palliative care is the field of medicine which deals with improving the quality of life towards the end of life, and further aims to provide a dignified and peaceful death when the time arrives. None of the instances I am sharing in context of palliative care has a proper closure. No crescendo, no happy conclusions, no success stories. Yet, I firmly believe that they are stories worth sharing. They may help introduce our community to the concept of palliative care. As for the medical students, it may help them realize the unmet need for palliative care in healthcare services. Palliative care is a vast field which encompasses taking care of not only the physical and mental health of the patient and the family but also involves addressing social, economic and emotional issues surrounding a chronic, debilitating and possibly terminal illness. It is a field that has traditionally been closely linked with care for the terminally ill. However, it needs to be recognized that Palliative Care is applicable wherever there is scope for improving quality of life of an ailing individual. It is not a last resort that one chooses when all other treatment options have been exhausted. In fact, combined early on with conventional treatment, palliative care not only reduces pain, but prolongs the duration of improved quality life. Medical students, irrespective of whether they pursue post-graduation or not, and irrespective of the branch for PG, can get trained in providing Palliative Care. For further information, a good source to begin would be “Pallium India” (https://palliumindia.org/).
Back in the summer of 2018, as a recently joined first year resident in Community Medicine, I was a wide-eyed enthusiastic girl, eager to soak in every little bit of a new world that was opening itself to me, in all its glory. In the middle of this hustle-bustle, I would often hear that my PG guide (whom I shall refer to simply as Sir henceforth) was in the “Palliative care OPD”. I wasn’t sure what it really meant. I had a vague idea about it…It had been discussed during the orientation week for the First Year residents. I knew we had a Centre for Palliative Care. But that was probably all I knew at that time.
Sometime in August, word started spreading in the campus that the “Father of Palliative Care in India”, Dr. MR Rajagopala would be visiting our campus for the screening of a feature length film based on his life and work, “Hippocratic-18 Experiments in Gently Shaking the World”. When the day came, I reached the auditorium, determined to open one more window to the world of Community Medicine. Though Palliative Care is seldom spoken in the same breath as Community Medicine, I associated Sir with Palliative Care and hence, in my mind, Community Medicine and Palliative Care went together. But how? That is something I hoped to understand that day onwards. As the film was screened and the interactive session with Dr. MR Rajagopala proceeded, it expectedly stirred me. For the uninitiated, Palliative Care is a branch of medicine which aims to improve the quality of life and more importantly, the quality of death for those who suffer from a terminal illness, those who are bedridden due to any cause, or those who suffer from chronic unbearable pain. It is based on the principle that any human being, deserves a dignified life, whatever the length, which is as pain-free as possible and when the time arrives, a dignified death. It encompasses not only patient care, but also care of the care-giver, taking into consideration the immense emotional, psychological, social and even economic turbulence that a family goes through when one among them suffers from a prolonged, painful, debilitating illness.
After a chance for personal interaction with Rajagopala Sir, one more interactive session in Ahmedabad, and one more visit to our campus by Ms. Gilly Burn, a renowned name in the field of Palliative Care, I was sure this was something I would explore further down the line.
As fate would have it, in 2019, I was denoted as the facilitator for palliative care field visits for undergraduate medical students. This was a unique opportunity for me to understand the need for community-based palliative care myself, and sensitize the medical students early-on in their journeys as medical professionals regarding the same. We visited a village in Anand district, where students conducted a house-to-house survey to identify homes which had individual(s) needing palliative care, the final inventory of which was forwarded to our community outreach program to help them plan palliative care interventions in the village. We also tried to organize a sensitization session at the village panchayat to introduce the concept of palliative care in the community. We failed miserably. We tried again the next month. We failed miserably again. Hardly four people showed up for the sessions we had organized. There is no happy ending to this part of the story. With time constraints owing to the packed schedules of the undergrad med students, we exited that village, unsure in my mind if we had contributed at all to those in need.
(To be continued in Part 2 of 2)
Image: A community sensitization session on palliative care organized at the gram panchayat attended by four individuals from the village. Rest of the crowd comprised of us, the organizers!