Conversations about dying

The Supreme Court judgement of March 9, 2018 in Common Cause vs Union of India upholds "the sanctity of human life" and "the right to a dignified existence, the liberty to make decisions and choices and the autonomy of the individual" even at the end of life. Emphatically prohibiting active euthanasia and physician-assisted suicide, it focuses instead on situations at the end of life and terminal illness, when life-sustaining medical treatments may be inappropriate or burdensome. A decision to withhold or withdraw such treatment would then allow the inevitable process of death due to the underlying illness.

The term 'passive euthanasia' has wrongly been used to describe such situations and the Indian Council of Medical Research in its 'Definitions of Terms at End of Life' has urged that this term be dropped as it could be misunderstood. Doctors are often unable to ethically justify continuation of care that is inappropriate or unlikely to be beneficial for the patient. Family members faced with decisions to withhold or withdraw inappropriate treatment find it extremely traumatic, and often leave it to the doctor. At other times, due to social pressures or emotional stress, families insist that "everything" is done for the patient. These situations are far from ideal, and unnecessary expensive, aggressive treatment can be avoided if patient's wishes are known and communicated.

In its judgement, the Supreme Court has allowed Advance Directives by conscious and informed patients that would clearly express in writing their acceptance or rejection of treatment choices, should they become unconscious or incapacitated at a later stage in their illness. It endorses the right to autonomy of the patient regarding treatment and also protects the physician's decisions made in the best interest of the patient.

The court ruling on Advance Directives and withholding/withdrawal of treatment confronts us with the uncomfortable task of talking about dying. Important factors that have forced this conversation on us today are longevity and advancements in intensive care. According to World Bank data, the average life expectancy in India has risen from 41 years in 1960 to around 70 years in 2015. The elderly are more likely to face situations of intensive care, cancer treatments and hospitalisation.

Advancements in therapeutics and medical technology, the boon of modern medicine that saves countless lives, can become a burden in end of life situations if the treatment is not beneficial and the experience undignified.

It is not uncommon for the elderly to refuse either hospitalisation or ICU care. Some view bed-confined and comatose patients, Alzheimer's and progressive neurological disorders with dismay, dreading the accompanying loss of control and autonomy. Just as it is meaningful to consider how we wish to live, it is equally important to think consciously about dying. While death is a moment in time, dying may be longer and more complex than we anticipate. The truth is, we are unaccustomed to talking about dying, find it deeply troubling, and fervently hope that we will not face tough medical decisions when the time comes. In our homes, death is a taboo subject, whispered about and considered inauspicious, even likely to invite the inevitable upon us! All this would have to change as medical technology and new laws force us to confront ethical issues around dying, to ensure that our choices are respected at the end of life.

Conversations about death allow us to confront the meaning of our existence, the purpose of suffering, and the concept of a 'good death' through the lens of religious beliefs, personal philosophy and moral values. The ability to accept the limits of medicine and a poor prognosis can help patients dwell instead on the quality of their final moments. A study by Steinhauser, et al, published in 2000, ranked key issues that contribute to a 'good death', like freedom from pain, peace with god, presence of family, mental awareness, respect of treatment choice, settled finances, meaningful life, conflict resolution, and death at home.

Once the barrier to these discussions is broken, patients will be able to share apprehensions and choices related to the dying process, including medical interventions, palliation and even organ donation. This can be helpful for family members who may have to make surrogate decisions on behalf of the patient. Withholding or withdrawing futile treatment does not mean that the patient is abandoned. Pain medication, oxygen, nutrition, symptomatic care and palliative care are essential components of medical care that dying patients are entitled to. While doctors are not obligated to provide treatment that is futile, particularly in view of limited resources, they have a professional duty to treat the dying with dignity, ensuring comfort and care of the patient until the end.

In light of the Supreme Court ruling, we need to begin conversations about death and dying and encourage our communities to confront this discourse. It can lead to better outcomes of care, ameliorate dilemmas in Intensive Care Units (ICU), Emergency rooms and oncology units, and assist doctors in serving the best interest of the patient.

(The writer is with the UNESCO Bioethics Unit, St Johns Research Institute, Bengaluru)