Protecting Human Dignity at the Beginning and End of Life

BP Prize Lecture Professor Graeme Laurie, School of Law, University of Edinburgh 15 January 2007 It is one of the deep ironies of advances in medical technologies that while they often make it possible to extend life, they may do nothing or little to improve the quality of life in the interim. New medical technologies can thereby give rise to new dilemmas about whether such advances should be deployed at all, or whether they should ever be removed once deployed. These dilemmas are the focus of this lecture. When should medical care be withheld or withdrawn when to do so will lead to the cessation of life? More particularly, what is the role of human dignity in this process? There has been a significant increase in appeals to this concept in recent years as a means to assist medico-legal decision-making. This lecture assesses how useful such appeals are. We now live in a human rights culture whereby we are able to make direct appeal in our courts for the protection of the rights contained in the European Convention on Human Rights since the passing of the Human Rights Act 1998. It is often said that respect for dignity underpins all of these rights, but it has not held any sway to date in the rights enjoyed by UK citizens. For our purposes, I would define dignity as the state or quality of being worthy of respect. But one of the problems with dignity is its elusive nature. The rhetoric of dignity is immediately appealing to most audiences largely because it is possible to read many different meanings into the term. Indeed, dignity is a concept which is capable of embodying opposite ideals, making it potentially dangerous in the hands of law-makers who might say one thing and intend another. A famous French case illustrates the point: Is it acceptable to ban the practice of dwarf-throwing for entertainment even when the dwarves themselves agree to the practice as a means to earn a living? Is it undignified behaviour from which individuals should be protected, or is it an affront to dignity to prevent this class of persons from exercising individual choices about how they use their bodies? The tension is between (subjective) autonomy perspectives about dignity as self-determination and (objective) paternalistic perspectives abut dignity as a state of worth for all persons. The French court adopted an objective position, upholding a view of dignity as aspiration for all of us and not as choice for a few of us. In the medico-legal context the issue is one of how far patient choices should be respected, especially in the face of futile treatment, and the added complication of how to deal with patients who cannot consent or refuse care because of incapacity, such as the newborn or the mentally incapacitated adult. Trends in judicial decision-making in recent years have placed increasing emphasis on the need to respect patient autonomy and choice, but this must not be allowed to become a crude equation of what the patient wants the patient should get. Appeals to subjective dignity as choice should not lead to a situation where health care professionals are required to administer care which they consider to be futile and against their better judgment. When appeals to autonomy cannot be made, as with the newborn or the mentally incapacitated adult, then the law falls back on a paternalistic assessment of patient best interests. Although this was once the exclusive domain of the medical profession, recent trends in the case-law make it clear that medical best interests are but one part of the assessment, and that a patients best interests can encompass a very wide range of social, ethical, physical, mental and welfare considerations. Notwithstanding, there remains a lack of clarity about the basis upon which a final decision to withhold or withdraw care should be taken. Is it when the provision of care would be futile? Is it when the continuation of life would be intolerable? Or, might it be when the decision to keep someone alive but in a severely reduced state of quality of life would be uindignified? It has been accepted by the courts, for example, that over-intervention with medical technology can put someone in a state which, it is judged, is not of sufficient value. But this raises a question which is at the crux of this debate: what are the limits of our authority to speak or act on behalf of someone else? The best interests test makes it clear that our prima facie respect should go to the patient but nontreatment leading to death is an option and we should not shy away from that reality. An intolerability test sets a high hurdle in favour of life, but this is usually judged in terms of pain or harm and it may not admit the full range of considerations. In particular, if life with dignity is not achievable, perhaps our focus should shift to death with dignity which is now common rhetoric. But what would be the legal reality? To admit the possibility of arguments based on dignity opens up considerably the scope of considerations when we may remain very unclear on what we mean by the term. It was once famously said of dignity by Justice Brennan of the United States Supreme Court: I recognise it when I see it. And this probably sums up the position for most of us. We can recognise an undignified state of being. The question is whether we have the courage of our convictions to act on it and whether sufficiently robust legal provisions could be framed to prevent against abuses when dealing with such a vague and potentially malleable concept.
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