Why the rumpus about “What Terri would have wanted”?
PHIL 211 The Debate Around Living Wills

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WHAT TERRI WOULD HAVE WANTED

Peter Wenz is clearly troubled that “living wills” might not accurately reflect what a patient in extremis might want. However, he also reports suspicions about the relevance and appropriateness of accessing a patient’s wishes through remembered conversations from better times. Why the rumpus about “What Terri would have wanted”?

Instructions: 400-600 words

Reference: Chapter 2 (p. 33-53)

Aruna Shanbaug spent 42 years in a vegetative state in Mumbai’s KEM Hospital before dying of natural causes in 2015. Her name will forever be associated with India’s still-in-the-making passive euthanasia law, which is in the news as the Supreme Court examines the provision of a “living will” — a person’s right to issue advance directive on the course of his/her treatment, including withdrawal of life support, should such a situation arise.

While the Supreme Court case (decided in 2011) seeking euthanasia for Aruna was dominated by the tussle between the woman who wrote her story and the hospital nurses who cared for her for decades, the essential question in the euthanasia/living will debate is that of consent.

PHIL 211 The Debate Around Living WillsThat is, if a patient’s consent is essential for a doctor to treat him/her when he/she is fully conscious, what is it that prevents that consent to be given or withheld in advance, in anticipation of a certain situation?

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In its 2011 verdict on the petition to allow euthanasia for Aruna, the Supreme Court had said: “If the doctor acts on such consent (expressed at an earlier date before he/she became unconscious or otherwise incapable of communicating it, as by a living will or by giving written authority to doctors in anticipation of his/her incompetent situation) there is no question of the patient committing suicide or of the doctor having aided or abetted him in doing so. It is simply that the patient, as he is entitled to do, declines to consent to treatment which might or would have the effect of prolonging his life and the doctor has in accordance with his duties complied with the patient’s wishes.” (Aruna Ramchandra Shanbaug vs Union Of India & Ors)

And there is, of course, the question of dignity — one of the reasons for which euthanasia had been sought on Shanbaug’s behalf. In the years since the 2011 judgment, this question has acquired an even higher pedestal in Indian jurisprudence. Dignity was in many ways the backbone of the pathbreaking August 24 Right to Privacy judgment — ‘dignity’ appears no less than 204 times in the 547-page judgment delivered by a nine-judge Bench of the Supreme Court. Denying an individual that dignity in death can hardly have a logical or legal basis.

“To live is to live with dignity,” said the order in Justice K S Puttaswamy (retd) and Anr vs Union of India and Ors. “The draftsmen of the Constitution defined their vision of the society in which constitutional values would be attained by emphasising, among other freedoms, liberty and dignity. So fundamental is dignity that it permeates the core of the rights guaranteed to the individual by Part III. Dignity is the core which unites the fundamental rights because the fundamental rights seek to achieve for each individual the dignity of existence. Privacy with its attendant values assures dignity to the individual and it is only when life can be enjoyed with dignity can liberty be of true substance. Privacy ensures the fulfilment of dignity and is a core value which the protection of life and liberty is intended to achieve.”

Had the provision of a living will existed in 1973 though, it is possible that Aruna would not have benefitted from it. This is because it is unlikely that a person in the prime of her life would imagine that a brutal sexual assault might render her a vegetable for decades. It is also not practically possible to word an advance directive even at an advanced age that foresees all treatment options that may be available in the future in a fast-paced medical world where new breakthroughs happen virtually every day.

This is, in fact, one of the known limitations of living will legislation in countries that have recognised the right of a person to prepare an advance document suggesting measures that should or should not be taken in case their competence to take responsibility for their own healthcare is lost. There is no way a living will provision can be made foolproof requiring no intervention of the doctor or immediate decisionmakers around a person — those inputs will always have to be factored into a law, given that it is not feasible for every person of every age to have a living will for unforeseen circumstances, or to imagine all treatment options that may be available for their particular condition when the time comes for execution of the living will.

PHIL 211 The Debate Around Living WillsThe key, therefore, lies in what has been described as training in “good medical practice”. (‘The Future Prospects for Living Wills’, D Greaves: Journal of Medical Ethics, December 1989) “Doctors in both the USA and Britain have an ethical and legal duty to forego medical treatment for incompetent patients who have not made their wishes known, and where the burdens of treatment outweigh the benefits,” the article said.

“Many doctors do not fulfil their obligations to their patients in this respect, either through ignorance or personal conviction, so that overall decisionmaking is variable and arbitrary according to which doctor the patient happens to come under. It may well be that this applies as much to doctors who withhold appropriate treatment in some cases, as well as in the more familiar cases where doctors continue with unduly burdensome treatment.”

In other words, in an ideal world, a living will would not have been required. And in an ideal world, the Centre’s concerns about its misuse — a living will is not recognised in the draft The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill — too would be misplaced.