Ronald Reagan, the 40th President of the United States of America, died in 2004 at the age of 93 at his home surrounded by his family. He had dementia which he lived with for nine years. His wife, Nancy Reagan, called his last moments of a peaceful death “the greatest gift” he could have given her. Compare this with the way India’s former Prime Minister Atal Bihari Vajpayee died in 2018, nine years after a stroke that had left him non-ambulant. The last 35 days of his life were spent in the All India Institute of Medical Sciences in New Delhi. He died on artificial life support systems.
Death is inevitable, the one certainty in life. When the time comes, and if you have an incurable disease, how would you like to go? Would you prefer your bed in your home, with your loved ones around you? Or would you prefer being all alone in an intensive care unit (ICU) with a tube in every orifice, hooked to machines that measure the functioning of every vital organ in your body, with each malfunctioning organ supported artificially?
In the West and India
The stories of Ronald Reagan and A.B. Vajpayee follow a certain pattern each. In Euro-American countries, more and more people are now documenting advance medical directives (living will) to express the way they would like to die. In these countries, terminally-ill people are allowed to die a natural death by taking them off life support systems if the likelihood of a return to a reasonable quality of life is low.
In a study published in the Journal of the American Medical Association in 2019, C.L. Sprung and colleagues showed that in European ICUs, people died while on life-support systems only in 10.3% of such cases. In the remaining cases, such artificial support measures were withheld or withdrawn and replaced by palliative care to permit death with some dignity.
Now let us compare this with what happens in India. In an editorial, Dr. Raj K. Mani, former president of the Indian Society of Critical Care Medicine, shows the cruel contrast in Indian ICUs. In India, approximately 70% of patients with incurable critical illness die on life support systems — alone in the ICU; the families outside in a crowded area are left to deal with hefty hospital bills, with no time to grieve.
What about the other 30%? To quote Dr. Raj K. Mani, these deaths were “mediated through the so-called Left Against Medical Advice/Discharged Against Medical Advice (LAMA/DAMA)” (an ethically unjustifiable practice representing unplanned treatment limitations without a formal shift to palliative care). The suffering that is meted out to the patient and family (physically, socially, mentally, and spiritually) with such a practice is unimaginable. This, however, starkly differs from what people desire. In a survey of nearly 3,500 people in Pune, 83% of the people reported their preferred place of death to be their home.
ICU routinisation, lack of legal clarity
Why do such practices continue? Perhaps it is a mistaken belief that the doctor must prolong life by delaying death at all costs by hours or days even when the futility of treatment is clear. However, no ethical principle says that doctors have such a duty. In India, the official definition of the ‘duty of care’ of a health-care provider as per the Indian Council of Medical Research (ICMR) is “to mitigate suffering. To cure sometimes, relieve often and to comfort always” with no exception to this rule. But this document gathers dust in obscure corners of medical college libraries, with practice across ICUs in India being vastly different.
This practice of routinisation of intensive care deaths is barely a quarter of a century old. Before that, ICUs were for people with salvageable health issues. Now, a good chunk of the society seems to have come to accept ICU deaths as normal. The nuclearisation of families could be a reason as death is no longer familiar to the average person. The consequence: families are unable to think about death, and unable to make the right decisions in the face of a major health issue. A 2022 Report of The Lancet Commission on the Value of Death points out that modern society has become death-illiterate. It calls for ‘death literacy’ which brings ‘death back to life’. A society that is brave enough to discuss death and dying among friends and family is likely to leave people empowered to cross that difficult bridge when they come to it.
Editorial | End-of-life decisions: On SC’s legal status to advance medical directives
The lack of legal clarity is also a contributing factor. India has no law covering end-of-life care. In its absence, a Supreme Court of India verdict of 2023 remains valid. According to this, any advance medical directive left by a mentally competent person will be valid and binding on health-care professionals. The Court also ratifies the withdrawal of life support in the context of futility. The process stipulated by this verdict is still a little complicated; but more than that, the lack of awareness about it amongst the public and professionals is the bigger barrier.
The unfortunate use of the phrase “passive euthanasia” adds to the confusion. According to the ICMR document referred to above, this is a misnomer. Euthanasia involves killing even if the intentions are good; therefore, euthanasia cannot be passive. Withholding or withdrawing artificial life support in the face of the futility of treatment involves no act of killing; it only allows natural death.
On palliative care and a living will
World Health Day (April 7) has passed and the theme for 2024 was “My health, my right”. The World Health Organization officially defines health as “physical, social and mental well-being and not merely the absence of disease or infirmity”. On March 7, 2024, in response to a public interest litigation, a three-member Bench of the Supreme Court chaired by the Chief Justice of India D.Y. Chandrachud observed that the right to health includes the right to palliative care. Let us hope that this results in a rational system in place to allow everyone to live with some dignity during the last few days and to allow them to go in peace.
When the time comes, none of us will have the power to fight for our rights. Unless the immediate family concurs with our desire for a peaceful death, we will have no way of exercising our rights. Therefore, it would be good to protect ourselves by preparing a living will, getting it witnessed and countersigned by a gazetted officer, and discussing the matter with the immediate family.
(A sample living will is available at https://palliumindia.org/2023/04/living-will-and-attorney-authorisation. It can be customised according to personal choices and wishes.)
Dr. M.R. Rajagopal is the founder-chairman emeritus of Pallium India and the author of the book ‘Walk with the weary.’ Dr. Parth Sharma is a physician, researcher, and founding editor of Nivarana, a public health information and advocacy organisation
