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Enshrining the right to live or die

Understanding Bioethics and the Law: The Promises and Perils of the Brave New World of Biotechnology

Praeger Publishers: 2008. 241 pp. $49.95, £27.95 9780275999186 | ISBN: 978-0-2759-9918-6

Easeful Death: Is There a Case for Assisted Dying?

Oxford University Press: 2008. 155 pp. $26 9780199539901 | ISBN: 978-0-1995-3990-1

Developments in the life sciences inevitably raise complex legal questions, such as when a human life begins and ends, and how much weight should be given to individual preferences about how and when we reproduce, or die. The law cannot avoid getting involved in these finely balanced bioethical issues, but courts and legislators are sometimes spectacularly ill-equipped to deal with them.

Terri Schiavo's case challenged bioethics law. Credit: L. DOWNING/REUTERS

Take the sad case of Terri Schiavo, described in Barry Schaller's riveting book Understanding Bioethics and the Law, which describes a series of confrontations between US law and some difficult bioethical dilemmas. Eight years after Terri lost consciousness and fell into a permanent vegetative state (PVS), her husband Michael sought court authorization for the removal of Terri's feeding tube. By this time, Michael's relationship with Terri's parents, Robert and Mary Schindler, had broken down, and the Schindler family objected to the removal of the tube. Michael and the Schindlers then engaged in virtually continuous litigation for the next five years during which the tube was removed, only to be reinstated two days later. The family were joined in this unedifying legal spectacle by various religious interest groups, advocacy organizations representing people with disabilities, and by the Florida House of Representatives. With the support of governor Jeb Bush, the Florida legislature passed Terri's Law, a statute preventing the withdrawal of nutrition and hydration from a patient “who met the unique description of Terri Schiavo”. After further legal challenge, Terri's Law was eventually ruled unconstitutional by Florida's Supreme Court.

The action then shifted to the federal level, and a bill to nullify the Florida court's decision was introduced in the House of Representatives and in the Senate. President George W. Bush returned early from his holiday to sign the Senate bill at 1 a.m. on 21 March 2005. All this legislative activity did not derail the court process. The US Supreme Court refused to hear an appeal to overturn the lower court's decision that Terri's tube could be removed. Terri eventually died on 31 March 2005.

Fortunately, the Terri Schiavo case is exceptional: most end-of-life decisions are resolved privately, through discussions between family members and clinicians. Although there are many differences between Schaller's book and Easeful Death — Mary Warnock and Elisabeth Macdonald's elegant and thoughtful discussion of the case for assisted dying — the authors agree that private, consensual resolution of complex individual cases is almost always preferable to exposing them to the harsh glare of litigation and legislation. Warnock and Macdonald, for example, seem to regret the ending of the 'humane practice' through which people could ask their “retired medical friends” for help in storing up “a collection of drugs for future use if they found life intolerable”.

The Terri Schiavo case, together with that of Dianne Pretty — a British woman with motor neurone disease who wanted to be helped to die — suggest that litigation may not resolve conflict. But at least court proceedings do focus on the individual. Schaller contrasts the US courts, which stuck to the question of whether Terri would have wanted to be kept alive in a PVS, with the “executive and legislative branches” who “disgraced themselves by pushing the boundaries of law and decency in their self-aggrandizing efforts”. Although this harsh criticism seems fitting given the political exploitation of this “private ethical dilemma about a young woman's sad decline”, it points to a wider problem in trying to use legislation to resolve complex bioethical issues.

Although the adversarial process has its disadvantages, the courts can at least attempt to deliver individualized justice, but legislation must apply to all. Translating compassionate responses to the suffering of someone such as Dianne into law is difficult precisely because legislation cannot just apply to one individual's situation: it must apply to everyone. Warnock and Macdonald quote Robin Gill, a member of the British Medical Association's medical ethics committee, who made a submission for Dianne on compassionate grounds. Her case, in Gill's view, “represented a very, very strong case indeed for voluntary euthanasia”. If it was just about her, and no-one else, he would be in favour of giving her access to assisted dying. But legislation cannot be personalized in this way, and Gill concluded “that more people will be made more vulnerable if we change the law in favour of legalizing assisted dying”.

Once an issue is before the legislature, the suffering of the individual, and the possibility of a compassionate and individualized response to that suffering, is lost. Someone such as Dianne has to die in a distressing manner, not because we think that she is vulnerable and incapable of making a considered, informed and voluntary decision to end her life, but because we think that other people might be vulnerable. Is this fair? Many would say no, and if we support Dianne's right to assisted dying, then we should not expect her to suffer for the greater good of society. Warnock and Macdonald accept that it would be hard to draft a law that would always succeed in protecting the vulnerable, but they conclude that, for compassionate reasons, we should at least try.

The legislative process offers an opportunity for special-interest groups to intervene. In the Terri Schiavo case, the concern of many advocacy groups was not the dignity and prior wishes of Terri herself, but the effect that her case might have on other people. If Terri were allowed to die, they asked, how would this affect other Americans with disabilities? These powerful advocacy groups formed an alliance with the even more powerful conservative religious lobby, leading to what Schaller describes as a “media mega-event”.

The cases of Terri Schiavo and Dianne Pretty raise different issues. Terri never contemplated ending up in a PVS, and her views on the withdrawal of life-prolonging treatment were unknown, whereas Dianne was intelligent and competent, and had clearly articulated views on how she wanted her life to end. It is odd, perhaps, given that Terri would know nothing of the court's decision, that the outcome hinged on what her husband and parents claimed her wishes would have been, as a result of the so-called substituted judgement test. By contrast, the views of Dianne, who went on to suffer greatly before she died, were largely irrelevant and trumped by the possibility of harm to others.

The law moves in ways that are mysterious to many. Both these fascinating books, although dealing with different jurisdictions and issues, contribute to our understanding of the most important ethical challenges that lawyers will face in the coming decades.

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Jackson, E. Enshrining the right to live or die. Nature 453, 284–285 (2008).

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