Deciding for the Future

Professor Richard Huxtable considers some of the ethical questions that arise, when we try to decide what treatment to give – or not give – to a patient who is nearing the end of life

By Prof Richard Huxtable
Centre for Ethics in Medicine, School of Social and Community Medicine, University of Bristol

Have you made an advance decision to refuse medical treatment? Have you appointed a “welfare attorney” – someone who can make medical decisions for you in the future, if (at that time) you are unable to do so? A great many people say that they want control over what can and cannot happen to them and their bodies. But it also seems that a great many people don’t make these wishes clearly known, in advance of them reaching a point at which they can no longer tell us what those wishes are. Should more of us be trying to make decisions for our futures? What are the ethical issues that arise here?

First, we should think about the types of decisions and people we are considering. If we’re talking about healthcare, then there are various decisions that may need to be made about what treatment and care to provide – or not provide – as life nears its end. Decisions may therefore be required about resuscitation, food and fluids, keeping her comfortable and free of pain, and so on.

If the person can tell us her wishes, here and now, then maybe there is no problem. But what if she cannot? English law makes a distinction between the person who has “mental capacity” and the person who does not. Mental capacity means the ability to take in, understand, and reason through the information available, and then come to a decision.[1] Capacity varies with the decision – I can have capacity to make one sort of decision, but not another. (Think, for example, of the card in my wallet, which suggests that I have the competence to drive a car – this does not mean that I have the competence to pilot an aircraft).[2] And sometimes capacity can be completely lost, such as when the individual has endured a very serious brain injury.

Whether she has lost her capacity permanently or only temporarily (or even only for one sort of decision), decisions will of course have to be made about how to care for the dying person. Understandably, we will often allow someone else to make the decision. In healthcare, this might be a doctor, who will make a decision in that person’s “best interests”, as the law requires.[3] This might seem sensible enough, but immediately the ethical questions arise. How should we understand a person’s “best interests”? Is it best that the doctor does whatever is necessary to prolong the person’s life? Or should the doctor be guided by the quality of that person’s life, and by any pleasure or suffering they might be expected to receive or endure? If the suffering is too great, then is it ethical to stop (or not start) treatment that might otherwise save or prolong her life? And to whom should the doctor be listening when trying to make the decision? Indeed, should it even be a doctor who makes the call?

These sorts of questions seem to boil down to two big questions: On what basis should treatment decisions be made? And who should be empowered to take these sorts of decisions? Ethics is all about asking “should” questions like these, and ethics is particularly concerned to ensure that we behave in appropriate ways, in our dealings with one another. Of course, some will say that there is a straightforward answer to both of these questions: we should let people decide for themselves.

Advance heath care directive (USA) form

The law already allows people to decide how decisions should be made about them in the future, at a point when they have lost capacity. There are two main options. First, an “advance decision to refuse treatment” can be made.[4] To use me as an example, this would involve me, when I have mental capacity, setting down in writing my wishes about what treatment I would not wish to receive, if I were to lose my mental capacity. Secondly, a “welfare attorney” can be appointed.[5] Here, I will write down who I would want to make healthcare decisions for me in the future, and what sorts of decisions I want them to be able to make.

This all sounds agreeable in principle. Indeed, the principle in question looks like being the principle of “respect for autonomy”. Autonomy, from the Greek, is all about self-rule i.e. I decide what’s best for me, so the principle states that we should respect people’s ability to govern their lives for themselves. But, when we dig a little deeper, we come up with more ethical questions. Whose autonomy should we respect and when? (Think of children and younger people – if I wrote down my wishes at 15, should these be respected when I am 41?) And what should it mean to “respect” autonomy? Should we respect – and act on – everything that the person says or said? Or can we place some limits on what people should be allowed to want and get? Finally, and this is a real philosophical head-scratcher, if I wrote down my wishes when I was healthy and had the mental capacity to make the decision, why should this statement apply to me when I am very sick and have lost that capacity? Am I even the same person in any meaningful sense?

To these questions we can add plenty more, once we peer into the details of advance decision-making and welfare attorneys. Thinking about welfare attorneys, we might have questions about who the attorney should be, and how much authority they do have and should have. Currently, the welfare attorney is bound not only to think about what that person might have wanted, but also to make decisions in the person’s best interests. That, of course, brings us back to the earlier dilemmas associated with deciding what is really for the best.

Advance decisions also raise questions. Can people specify – in advance – what they want to happen in the future? Will these statements be clear enough to guide the doctors and other members of the healthcare team? How much detail is needed? Some people have taken to getting tattoos on their chests saying, for example, “not for resuscitation” – should the doctors take such tattoos at face value?[6]

Although there are undoubtedly many more, these are some of the most significant ethical questions that arise when we consider how to treat – and not treat – people towards the end of their lives, and particularly when we consider how to go about making decisions for the future. Certainly, we need to be guided by what people want. First, then, we need to know more about what people – and, indeed, their loved ones – want at the end of life. In our research, we hope to find out more about this. But even once we know what people want, we also need to think about the wider ethical questions – about how far we should honour people’s wishes, and how we should balance these wishes against our responsibilities to other people. These, too, are the sorts of questions we are interested in exploring.

We hope, in asking these sorts of questions in our research, that we can make a positive contribution to providing good quality care for the dying person. Hopefully the answers we will find will help us to find an ethical way forward – answers that, like all good ethics, will help us to think about what we should do and who we should be, in our journey through life to death. Of course, if we’re going to improve end-of-life care, we need to be willing to talk about it – about what we might want or not want, whether that is now or in some possibly distant future, and about what we think our laws, policies and practices should be. In the words of the Dying Matters coalition, “dying matters – let’s talk about it”.

[1] The idea is explained in more detail in an Act of Parliament, the Mental Capacity Act 2007, which became law in 2007. The relevant provision can be found here.

[2] I expand on this idea – and, indeed, on many of the ideas in this post – in my book Euthanasia: All That Matters (Hodder, 2013).

[3] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[4] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[5] This idea is also contained in the Mental Capacity Act 2007. The relevant provision can be found here.

[6] BBC News covers one such story, here.

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