Why Narratives Do (and Should) Matter in Bioethics

There is a fascinating recent decision from the Indian Supreme Court on the Shanbaug case, regarding a woman who has been in a persistent vegetative state (PVS) for over 37 years. A petitioner who had written a book on Shanbaug (Pinky Viranai) argued for a withdrawal of life support. Shanbaug had no family to intervene, but hospital staff resisted, and the Court ultimately sided with them. While unflinchingly examining the dehumanizing aspects of PVS, the Court offers a remarkable affirmation of the good will of the staff who have taken care of Shanbaug:

[I]t is evident that the KEM Hospital staff right from the Dean, including the present Dean Dr. Sanjay Oak and down to the staff nurses and para-medical staff have been looking after Aruna for 38 years day and night. What they have done is simply marvelous. They feed Aruna, wash her, bathe her, cut her nails, and generally take care of her, and they have been doing this not on a few occasions but day and night, year after year. The whole country must learn the meaning of dedication and sacrifice from the KEM hospital staff. In 38 years Aruna has not developed one bed sore. It is thus obvious that the KEM hospital staff has developed an emotional bonding and attachment to Aruna Shanbaug, and in a sense they are her real family today.

After a scholarly survey of many countries and U.S. states’ laws on withdrawal of life support, the Court concludes:

A decision has to be taken to discontinue life support either by the parents or the spouse or other close relatives, or in the absence of any of them, such a decision can be taken even by a person or a body of persons acting as a next friend. It can also be taken by the doctors attending the patient. However, the decision should be taken bona fide in the best interest of the patient. . . .

In our opinion, if we leave it solely to the patient’s relatives or to the doctors or next friend to decide whether to withdraw the life support of an incompetent person there is always a risk in our country that this may be misused by some unscrupulous persons who wish to inherit or otherwise grab the property of the patient. Considering the low ethical levels prevailing in our society today and the rampant commercialization and corruption, we cannot rule out the possibility that unscrupulous persons with the help of some unscrupulous doctors may fabricate material to show that it is a terminal case with no chance of recovery. There are doctors and doctors.

While many doctors are upright, there are others who can do anything for money (see George Bernard Shaw’s play ‘The Doctors Dilemma’). The commercialization of our society has crossed all limits. Hence we have to guard against the potential of misuse (see Robin Cook’s novel ‘Coma’). In our opinion, while giving great weight to the wishes of the parents, spouse, or other close relatives or next friend of the incompetent patient and also giving due weight to the opinion of the attending doctors, we cannot leave it entirely to their discretion whether to discontinue the life support or not. We agree with the decision of the Lord Keith in Airedale’s case (supra) that the approval of the High Court should be taken in this connection. This is in the interest of the protection of the patient, protection of the doctors, relative and next friend, and for reassurance of the patient’s family as well as the public. This is also in consonance with the doctrine of parens patriae which is a well known principle of law.

I am no expert in this area of law, but I thought the Court’s opinion very interesting and worth recommending as a survey of global views on the topic and a careful consideration of a particular case. I also think the mentions of Shaw and Cook raise an interesting question for devotees of law & literature and law & humanities scholarship.

The Place of Stories in Legal Analysis

Having published on bioethics in a law & humanities journal, I do think poetry & literature can tell us “what always happens,” as opposed to history’s account of “what happened.” For over a decade, the journal Health Affairs has featured a column (and now podcast) called “Narrative Matters.” There is a book collecting such essays, featuring some classics in the genre. The best writers tell us about the enduring aspects of what it means to be human. Moreover, you never understand the health care system the same way once you’ve had a serious illness and experienced “patienthood” first hand.

But I am aware of Richard Epstein’s approach in the collection “On 1984: Orwell and our Future,” where he is said to “maintain[] that the normative messages in Orwell’s fiction were based too heavily on Orwell’s idiosyncratic, and thus unprepresentative, experiences” (5). Echoing Holmes and latter day empirical legal scholars, Epstein insists that empathy for the poor or vulnerable is far less valuable than a hard-headed examination of how they got to be that way. In the Shanbaug case above, present-day concerns about “rampant commercialization and corruption” among Indian robber-barons may have made the Court exceedingly receptive to parallel narratives of medical malfeasance.

However, I think Epstein and his ilk are far too confident in the ability of any “social scientific” efforts (to understand, predict, and control the future) to rise above motivating narratives. Nobel Prize winning economist George Akerlof and Robert Shiller described the fundamental role of stories in economic reasoning in their modern classic, Animal Spirits. As they explain:

The idea that economic crises, like the current financial and housing crisis, are mainly caused by changing thought patterns goes against standard economic thinking. But the current crisis bears witness to the role of such changes in thinking. It was caused precisely by our changing confidence, temptations, envy, resentment, and illusions—and especially by changing stories about the nature of the economy. . . .

[O]ur sense of reality, of who we are and what we are doing, is intertwined with the story of our lives and of the lives of others. The aggregate of such stories is a national or international story, which itself plays an important role in the economy. . . .The human mind is built to think in terms of narratives, of sequences of events with an internal logic and dynamic that appear as a unified whole. . . .Great leaders are first and foremost creators of stories.

The Indian Supreme Court’s careful recounting of the details of Shanbaug’s care, and elliptical reference to “horror stories” about physicians who fall short, is a bid for that type of “great leadership.” More concretely, the Court wants to point to what David Brin has called “self-preventing prophecy,” a genre that includes George Orwell’s, Aldous Huxley’s, and Gary Shteyngart’s novelistic efforts to “rock the public’s conscience” and “help[] us to divert disaster.” Shaw’s work is probably good enough to merit such treatment, but does Cook’s potboiler really add much to the argument?

This post first appeared on Health Reform Watch, the web log of the Seton Hall University School of Law, Health Law & Policy Program.

Frank Pasquale is the Schering-Plough Professor in health care regulation and enforcement at Seton Hall Law School and is the Associate Director of the Center for Health & Pharmaceutical Law & Policy. He has distinguished himself as an internationally recognized scholar in health, intellectual property, and information law.  A prolific writer, Professor Pasquale’s work has been featured in top law reviews, books, peer-reviewed journals, and online blogs, including Health Reform Watch, of which he is Editor-in-Chief.