Ethical Issues in Dementia Care

Making Difficult Decisions

Julian C. Hughes, Clive Baldwin

• Publisher: Jessica Kingsley Publishers
• Year: 2006
• ISBN:
  9781846425585
• Topic: Medicina
• Subtopic: Etica in medicina

Bradford Dementia Group Good Practice Guides

There are always difficult day to day decisions to be faced when caring for a person with dementia - from knowing how to deal with wandering to end of life decisions. Many of these decisions are underpinned by value judgments about right and wrong and reflect a particular view of dementia. This book considers these ethical decisions in the context of relationships, treatment, safety and quality of life, offering practical guidance and advice. It draws on the experiences of family carers as well as on existing research and emphasizes the importance of empathy and the need to acknowledge different perspectives in order to reach the best decision for the person with dementia. In particular the authors discuss the way that decision makers are themselves changed by the decisions they make, and the impact of this on the decision-making process. This book should be read by all those who work caring for people with dementia.

Chapter 1

Making Moral Decisions

From consequences, duties and principles to conscience

INTRODUCTION

Morals are messy; ethics is everywhere. These are the two themes we wish to stress in this chapter. Before explaining what we mean by them, it is worth saying where these themes will lead us. We shall see, first, the extent to which morality is not as neat and tidy as some theories suggest, and second, that ethical decisions are commonplace: we make them all the time. This leads to the conclusion that from day to day we often have to make difficult decisions for which there is no neat and tidy theory to help us. In short, we live in a messy world. Our job – which we cannot avoid – is to find our way through the messy world day by day. The hope, of course, is that we can do this successfully and even with some satisfaction.

However, perhaps we have already jumped ahead of ourselves by not defining what we mean by ‘moral theories’ and ‘ethical decisions’ (see definitions overleaf).

Moral theories – systems or structures of thought and belief that help us to decide what is good and what is bad.

Ethical decisions – decisions about what it might be right or wrong to do.

Moral theories give us ways of understanding what might be a good thing and what might be a bad thing. They can provide a framework for the ethical decisions we have to make. We would certainly not wish to be too critical of these moral or ethical theories. They have, after all, been developed by some of the world’s greatest thinkers and they reflect deep-seated beliefs. But in the busy world of dementia care, as in other areas of practical life, applying such theories can be a problem. In order to show the strengths and the weaknesses of such theories, we shall consider two of them very briefly (consequentialism and deontology) and discuss an approach that is derived from these theories (called principlism). Our intention is certainly not to try to give a full account of these moral theories (see Gillon 1986); in fact, we really wish to get them out of the way – but we need to say why.

CONSEQUENTIALISM

The word ‘consequentialism’ conveys a simple message: if you want to know whether an action is right or wrong, look at the consequences of doing or not doing it. Now, this can be a very sensible way to decide whether or not what we want to do is good or bad and, indeed, people do tend to think in this way. For example, one husband caring for his wife, when asked about why he had decided to lock the doors and windows in his house, replied:

it appeared to be the lesser of the two evils because to let my wife out was a very dangerous thing because that was at the time when she was going off, she was setting off on a journey of 180 miles to where her parents had lived, which, obviously, there were a lot of dangers with it. And there was a suicidal attempt. She tied herself to the gates of an old cemetery, a disused cemetery on a cold day. She could speak at that stage and when I did find her and brought her home I said, ‘Whatever were you thinking of?’ and she said, ‘I want to die.’ So locking doors, locking her in, was the alternative to possibly letting her go out to commit suicide.

Another carer talked about how she decided on whether or not to tell her mother with dementia the truth. She took into account whether her mother would be distressed:

I would say that it’s good for everybody if we can all tell the truth but I think that we have to recognize that the truth sometimes does more damage than a lie, and is better withheld. You’ve always got to put the person first. Never mind what your own thoughts are or your own feelings, you’ve got to put yourself in their shoes and the effect on them is what you’re concerned about. So a little white lie is sometimes a very good thing.

There are problems, however, with looking at consequences only in order to decide what is right and wrong. An often-used example is the case of the runaway railway carriage that is hurtling along a line and is going to kill five workmen if it is not stopped. You are standing next to someone and you can stop the train by pushing him or her onto the track. The consequence would be one death as opposed to five. From a purely consequentialist point of view, it looks like the right thing to do would be to push the person. However, most of us, even if the certainties were 100 per cent, would not entertain such a thought. Pushing the person seems in itself wrong, whatever the consequences. The point is that looking at the consequences, at what follows, takes our eyes off the action itself. We may end up doing something terrible in order to do something good. Some people feel that this is such an awful idea it makes this way of thinking completely unacceptable. They might put it thus: the end never justifies the means.

This brief description of an extremely influential moral theory shows us already one problem (see definition of consequentialism below): ethical theories get argued about, and always have been argued about, so how can we rely on them when we are faced by difficult decisions in our daily work?

Consequentialism – to decide if an action is right or wrong by looking at its consequences (e.g. will doing it make people happy or sad?). But does the end always justify the means?

DEONTOLOGICAL (DUTY-BASED) ETHICS

The even grander word ‘deontology’ means something just as simple as consequentialism. Deontological theories suggest that if you wish to know whether to do something, you should not ask, ‘What are the consequences?’, but rather, ‘Is it my duty to do this?’ The word deontology implies – and can be replaced by – the words ‘duty-based’. So, we might say that we have a duty to protect innocent human life. In health and social care, for instance, people talk about a ‘duty of care’. The idea is that once you become responsible for someone, you have to care for him or her, not because of the consequences, but simply because it is your duty to do so. In fact, the consequences of caring for someone may be quite bleak: caring is stressful, time consuming, sometimes unrewarding, potentially harmful (think of lifting someone), expensive and may in the end seem pointless if, for instance, the person dies. Still, we accept the duty of care. It seems to be a good thing in itself for one person to care for another.

For some family carers, this ‘duty of care’ comes in the form of their marriage vows:

Well, I’ve put it [being a carer] down to the fact that I have a strong sense of duty, generally and that’s confirmed by my contact with other carers… If you’ve married somebody, you’re partners for life: you look after them and they look after you, so if anything goes wrong you look after them, it’s as simple as that... And more importantly if somebody needs you then you should respond.

As you might have guessed, however, there are arguments against duty-based ethical theories. For instance, some have argued that we always have a duty to tell the truth (whatever the consequences). The schoolboy, Tom, knows that the consequences of telling the truth and admitting that he smashed the window will mean that he gets into trouble, but we would still argue that Tom has a duty to tell the truth. However, to use an old example, if in the Second World War you happened to know that the Jewish family of Anne Frank were hidden in a house, if asked by the Gestapo, would you have had a duty to tell them the truth? In other words, sometimes the consequences of an action are much more important than the nature of it (see definition of duty-based theories below). Who cares about the duty to tell the truth if telling the truth leads to something abhorrent?

Duty-based theories – to decide if an action is right or wrong by deciding whether it is the sort of thing you ought to do as a duty (e.g. we might think we normally have a duty to save a person’s life if it is in our power to do so). But can we really just ignore the consequences of our actions?

We ended the section on consequentialism by pointing out that ethical theories are themselves constantly argued about. Now we see that this problem is made worse, because there are different ethical theories that sometimes seem to argue in different directions, so how do we know which one to choose? (The arguments for and against numerous different ethical theories are very well presented in Hope, Savulescu and Hendrick 2003.)

PRINCIPLISM

One way to get round the problem of choosing between ethical theories is to plump for ‘principlism’. The idea is that whichever ethical theories we might prefer (and there are other theories than the two we have mentioned), they tend to support certain principles. So, instead of learning all about the moral theories, we could simply stick to the principles and this should ensure that we always do the right thing.

The common principles are these (Beauchamp and Childress 2001):

•Autonomy: people should be able to decide what they want to happen or be done to them.

•Beneficence: we should try to do good to the people we care for.

•Non-maleficence: we should try to avoid doing people harm.

•Justice: people should be treated fairly and equally.

These are sometimes known as the ‘four principles of medical ethics’, but others can be added, such as:

•Fidelity: we should always tell the truth and be truthful.

•Confidentiality: we should always keep the information we have learned in confidence about people we care for safe and private.

Although these are referred to as principles of medical ethics, they are principles that are used in everyday life too. Here for example, Walter, a family carer, talks about respecting the person’s autonomy:

I think in the early stages of the illness there was always a tendency to take over. So, for example, if he couldn’t tie his shoelaces, instead of just letting him try for a bit longer, the natural thing is to say, ‘Come on, let me do it’, when in fact I’ve now learned that what I should have been doing was allowing him to do it in his own way however long it takes because...that’s, if you like, respecting their independence and their autonomy.

Another carer, Harold, mentioned how, with the idea of doing good in mind, he made decisions regarding:

things like coming out of the choir. Well, basically from what I learnt from [the day centre] was, ‘Is this any benefit to the person? And if it isn’t, well then there’s no point in putting them through it any longer’. She came to village things for ages, people knew how to handle it. And as long as I felt it was doing her some good we kept going.

A third, Harvinder, discussed doing good and avoiding harm:

It [medication] would certainly have to be monitored very carefully to make sure it is a correct medication because we all know that if we have something for a month and it’s not doing any good or it’s doing you harm, the side effects or something, it has to be changed.

The trouble with these principles, however, is that they can conflict and sometimes pull us in different directions. For instance, a doctor might be certain that he or she can make a person better; so in accordance with the principle of beneficence (i.e. doing good to people) the doctor ought to do whatever will make the patient well. However, respect for autonomy (i.e. the principle that people should choose for themselves) might mean that the person’s right to refuse treatment should be respected. Put like this we might be tempted to say, ‘Well, it seems fairly obvious that the person’s wishes are crucial, so it looks as if autonomy always trumps beneficence’. But should this always be the case? Let us consider some specific case examples.

Case example: the man with a bad headache

Mr Able has had a bad headache for over 24 hours. He goes to the doctor and after a few tests is reassured that there is nothing sinister going on. It is just a headache. The doctor offers him some stronger painkillers, but he refuses and says he is able to put up with it.

Conclusion: The doctor must respect Mr Able’s autonomous decision not to have more tablets.

Case example: the psychotic inspector

Detective Inspector Nye, who has always been a capable and successful police officer, starts to develop paranoid delusions. He is not sleeping because he feels he must keep watch from his bedroom window. He is firearms trained and he seeks permission to take a gun home with him. He is encouraged to see a doctor, who wishes to have him into hospital for investigation and treatment, but he denies there is a problem.

Conclusion: It is more difficult to respect the inspector’s autonomous wishes. It sounds as if he has a serious mental illness, which may reflect an underlying physical condition that could be treated. In order to do good (beneficence), perhaps he should be...