An article published in The Indian Express on November 24, 2021 by Harmala Gupta, Founder-President, CanSupport
An Indian doctor resident 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. The header of his letter was “End of Life Issues Neglected in India”. His mother had been admitted with a stroke and a fracture of the spine but what followed during the three weeks she was hospitalized 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 anesthesiologist. Despite the fact that the family had requested no life support, their wishes were ignored.
Not much has changed. In India, those with family members who are hospitalized with serious health related suffering continue to agonize 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 recognized the term “palliative care”. The concept of delivering care at home was also new. This, despite the fact that 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, of other symptoms, and of 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.”
Its inclusion in public policy in a number of countries today and its recognition as an essential component of universal and equitable health care is because of the consistent efforts of palliative care advocates in India and abroad. However, our work is far from done.
Palliative care is almost non-existent at the grass root level 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 health care 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-commmunicable 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% come with advance disease and half die within a year, and yet no more than 2% receive palliative care because of the paucity of services. Thanks to the reluctance of people to get timely checkups 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 the reason 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 in 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 is what 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.
It is hard to believe that what began twenty five years ago as a voluntary effort by a few well intentioned people is now an established organization that runs the largest home-based palliative care programme in the country. Besides New Delhi and the National Capital Region, it has a presence in three major northern states of India and is recognised globally for its meaningful contribution to palliative care. 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.
{CanSupport Helpline Numbers: – 41010539, 9899011212 (Monday to Friday, 9:30 am to 5:30 pm)}