Who Can Afford a Good Death?
– Dr. Dhvani Mehta, New Delhi
Lata Mangeshkar, a beloved national icon, passed away recently in an intensive care unit at a tertiary care hospital in Mumbai. She had spent nearly a month in the hospital, and just before she died, was on a life-support machine that is ubiquitous in critical care settings—the ventilator. This has become the mode of death for the rich and famous—in a sterile, impersonal setting, hooked to the latest range of technological innovations designed to stave it off. While Lata didi was receiving every kind of medical intervention available at the end of life, somewhere else in the city, no doubt, there must have been a family taking their terminally-ill loved one home after obtaining a ‘discharge against medical advice’ (‘DAMA’) because of their inability to afford the eye-watering expense of end-stage medical treatment.
The Paradox of Overmedicalisation and Lack of Access
While it may be presumptuous to speculate about the way in which either of these persons might have wished to die, it is reasonable to conclude that both of them, albeit in different forms, were unable to experience the kind of death that the recently released Lancet Commission report on the Value of Death holds out as an ideal—a peaceful passing away in a family or community setting with appropriate access to palliative care. This example also illustrates the paradox that is at the heart of the Commission’s report—an increasing section of people are overburdened with medical interventions at the end of life, while a vast majority are undertreated and denied access to palliative care and pain relief.
It is not surprising, that in a country like India, which has not achieved Universal Health Coverage (UHC), and, has a health system that disproportionately neglects public health in its quest to build super-specialty tertiary care hospitals, the trend of overmedicalisation still continues. It is no wonder that those patients and their families from socio-economically vulnerable groups, obtain DAMA at the end of life and are therefore denied access to the most basic comfort care and instead made to suffer the ignominy of death after a furtive extubation in an ambulance on the way home from hospital. This can only happen in a society that has not recognised a collective responsibility to ensure a good death for each of its members. A patient who cannot pay for what is probably an unnecessary medical intervention is then also denied access to palliative care.
Social Equity, Education and Awareness of Palliative Care
Social and cultural capital also has an impact on the kinds of people who are able to demand access to palliative care, at least in certain urban settings. As a lawyer working on end of life care, I have had the opportunity to speak to a large number of caregivers and medical professionals about the legal barriers that exist in withholding or withdrawing life-sustaining treatment. There is a certain kind of homogeneity in the socio-economic background of the people having these conversations, although of course, these people themselves care for and work with all sections of society. The language of rights and dignity in the context of refusing unnecessary medical intervention and asking for appropriate palliative care is linked to a certain kind of socio-economic privilege. This is even moretrue in the context of advance medical directives, which could be a powerful tool in demanding access to palliative care. Awareness about these instruments is, for the most part, unfortunately restricted to educated, urban sections of society.
The Right to a Good Death
The right to die with dignity has been recognised as a fundamental right by the Supreme Court of India in Common Cause v Union of India, its landmark judgment recognising the legal validity of advance medical directives and the right to refuse medical treatment, including life-sustaining treatment. These so-called negative rights must be linked with the positive right to demand access to affordable, high-quality palliative care in all settings. In public settings, this requires the State to invest in the training of healthcare professionals. In private settings, this requires doctors and hospital administrators to act in an ethically responsible manner without the fear of legal action. The model bill on end of life care that the Vidhi Centre for Legal Policy and the End of Life Care in India Task Force have jointly drafted, incorporates a right to access end of life care and imposes a corresponding obligation on healthcare establishments to provide end of life care services. Sustained, inclusive advocacy will help translate these aspirations into real entitlements.
About the Author: Dr. Dhvani Mehta is a co-founder of the Vidhi Centre for Legal Policy, an independent think-tank that does legal research to improve governance for the public good and assists government in making better laws. She leads Vidhi’s work on health and has been working on end of life care since 2015. She has appeared in the Supreme Court of India in Common Cause v Union of India and was a part of the expert committee of the Indian Council of Medical Research on ‘Do Not Attempt Resuscitation’.