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The need for palliative care in India has never been greater

Harmala Gupta writes: Its goal is the achievement of the best possible quality of life for patients and their families.

Written by Harmala Gupta |
Updated: November 25, 2021 7:38:09 am
Palliative care is almost non-existent at the grassroots in India.

An Indian doctor in the US wrote to me a few years ago about the treatment meted out to his 81-year-old mother in a private hospital in New Delhi. His mother had been admitted with a stroke and a fracture of the spine. What followed during the three weeks she was hospitalised was sheer torture. She was seen and followed by two internists, a spine surgeon, a general surgeon, a cardiologist, a neurologist, a dermatologist and a gastroenterologist, in addition to an intensive care specialist and an anaesthesiologist. Though the family had requested no life support, their wishes were ignored.

Not much has changed. In India, those with family members who are hospitalised with serious health-related suffering continue to agonise over how they can ensure a dignified end for them. In 1997, when CanSupport began its free-of-charge home-based service for the underserved, hardly anyone in the medical community recognised the term “palliative care”. The concept of delivering care at home was also new. In 1990, the WHO had defined palliative care as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, other symptoms, and psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families.”

Palliative care is almost non-existent at the grassroots in India. There is a lack of trained personnel, restricted access to opioids for pain control, and a refusal to accept that there comes a time when you need to work with the process of dying rather than against it. Moreover, it requires an interdisciplinary team of healthcare professionals who are sensitive and good listeners as well as excellent communicators and team players.

The need for palliative care has never been greater. Non-communicable diseases like cancer are on the rise. At present, in India, we have 30 lakh (3 million) people with cancer at any given time. Of these, 75-80 per cent come with advanced disease and half of them die within a year, and yet no more than 2 per cent receive palliative care because of the paucity of services. Thanks to the reluctance of people to get timely check-ups during the pandemic, the number of people presenting with advanced cancers in the coming days is likely to swell. They will need palliative support.

Palliative care respects patient autonomy. It requires end-of-life conversations to ascertain the wishes of the person who is dying and those of the family. Training professionals and working in a collaborative manner with those in the field of palliative care is the way forward. Difficult choices often have to be made. This is why people must make a living will and designate a surrogate who will take decisions on their behalf should they be incapacitated.

We must also move from a death-denying society to one that accepts death. I once heard a physician say, “We should rename palliative care and call it symptomatic care so as to make it more acceptable.” The intention was to give hope to patients and their families. To me, it sounds more like avoiding reality. Everyone needs to know what they are up against. However, what is said, how it is said and when it is said is key. The practice of medicine is as much a science as an art.

There is also a need for the treating specialist to continue to be involved. There is a tendency to cut off relations once treatments fail. This is terribly unfair for patients and families who would like to receive the benefit of their advice and expertise.

In the Indian situation, not only should patients be referred to the palliative care team early to ensure a better quality of life, but the continued survival and safety of members of the family left behind is also a concern. Their rehabilitation is consequently also a part of palliative care. It will bring peace to a dying patient, who seeks assurance that his or her family will be safe and able to cope.

CanSupport’s programmes have grown in response to users’ needs. Besides the home-care service, we have a telephone helpline, day cares and out-patient clinics as well as a rehabilitation and social support unit. We also do research, educate and teach. What began 25 years ago as a voluntary effort by a few well-intentioned people is now an established organisation that runs the largest home-based palliative care programme in the country. We owe a debt of gratitude to those who contributed their talent, time and resources. But most of all to families who put their trust in us.

This column first appeared in the print edition on November 24, 2021 under the title ‘Quality of death’. The writer is founder-president, CanSupport

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