Advance directives

Abstract

Drs Hegde, Bell and Cole should be congratulated on their excellent case report concerning management of a Jehovah's Witness with dementia [1]. In their article they succinctly set out the main ethical and legal issues surrounding this difficult case. However, I would like to take this opportunity to expand on one issue that was briefly raised in their report and that is the role of the advance directive in this situation. Their patient did not have an advance directive but they imply on several occasions that if one had been produced it would have simplified the legal and ethical issues concerning the case and helped guide management. For example, in their paper they claim that ‘there are no grounds for prematurely terminating that life by withholding blood products unless it was unequivocally expressed as an enduring and informed wish in the event of dementia’. I would like to offer some caution to the belief that advance directives offer a simple solution to the ethical problem cases such as this one produce. Although advance directives have been given greater legal force by their incorporation into statutory law by the Mental Capacity Act 2005 and there is widespread support for their use, I think it is important to highlight several strong ethical arguments that in this case call into question the morality of following an advance directive. Much bioethical literature supports the use of advance directives and there is an assumption that they constitute the preferred approach to determining how aggressively to treat seriously ill patients that now lack capacity. The underlying argument for following them is that they appear to promote autonomy. No one would doubt that autonomous decision making should be seen as carrying the most weight in treatment decisions. Advance directives are seen as a way of projecting patients' earlier expressions of autonomy into the future. This has been described as ‘precedent autonomy’[2]. The problem is that true autonomy requires the person to have adequate understanding or, in legal terms, to be fully informed. But with advance directives how informed can one be about a situation that is yet to occur? Often advance directives fail to take into account the complex clinical situations that can occur in the future [3] and studies have shown that patients want their physicians to have considerable leeway in interpreting their orders due to uncertainty about their future [4]. This kind of prospective decision making can never be as informed therefore as contemporaneous decision making. Indeed, in their article Hegde et al. quite rightly question just how informed a patient can be about death from anaemia unless experienced at first hand. True autonomy can only be a process of contemporary reflection and this is particularly the case when the consequences of any previous autonomous decision are extremely grave for the current agent. Therefore, it is simply not true to say that respecting an advance directive is the same as respecting a contemporaneous autonomous decision. There is also another philosophical argument against the recognition of an advance directive in this case, based on the concept of personal identity. Critics of advance directives have pointed out that morally what matters in identity is psychological connectedness, and the current self may have as little psychological connectedness to an earlier self as the current self has with another separate individual [5, 6]. This is particularly the case with a disease like dementia where the substantial memory loss and other psychological changes that occur may produce a ‘new’ person. The critical interests of the earlier self are now wiped out and replaced by another set of critical interests, even though these can not now be expressed autonomously. So in Hegde et al.'s case, it could be argued that, morally, their patient's earlier critical interest to avoid blood now has as much legitimacy over what treatment is given to her as it would over the treatment given to another person. Indeed, their patient expressed a wish (although obviously lacking autonomy) to receive blood and such a wish was critical to her interest in staying alive. It should be remembered that the concept of the advance directive was legal in origin [7] and now has the full force of statutory law to support it. Ethically, however, there is still much debate about the moral validity of advance directives and there are strong arguments, some of which I have presented in this letter, that question their widespread acceptance and role in decision making. Sadly, I think Hegde, Bell and Cole's plea for ‘convergence between the law, ethical principles and professional guidelines’ may never occur, even with the seemingly straightforward concept of the advance directive.