At a basic level, people need to know about ethics simply to get along with each other, as ethics enters into every interaction that they have with others. In some way or other, at its heart, ethical behaviour must take into account how each person might affect others. This means that people should consider the possible consequences of what they do. But ethics is more than thinking about the possible consequences of actions. Each person needs also to reflect on the reasons for doing things, on what sort of person they want to be and how relationships might be valued and nurtured in even the most challenging care environments.

In addition to some of the principles that have become a common element in discussions of ethics, some key concepts and how they work in practice need to be understood. Take trust and promising, for example. Imagine that you ask a friend if you can borrow her car. You promise to bring it back by 5pm, when she needs it to drive home, and you promise to put some fuel in it. You bring it back at 6pm and have not put fuel in it. She has had to miss out on visiting her mum in hospital on the way home and she has to put fuel in herself. A week later, you ask to borrow the car again. She is not keen, but you beg and plead, and she relents. You promise (again) to bring the car back on time and full of fuel. Again you are an hour late and forget to put fuel in. The next time you ask, she says ‘No’. You have broken your promises to her, she is not happy with what you have done and she no longer trusts that you will keep your word.

Breaking a promise has consequences. Some consequences are immediate, some are short term, some are delayed and some are long-lasting. At the personal level, breaking a promise may mean that you are not trusted in the future, and may lead to the break-up of friendships and families, or to the loss of jobs and so on. If breaking promises happens on a wider scale, there will be less and less trust between people. This could signal the beginnings of a major breakdown in our relationships, in our communities, in our workplaces and in our society as a whole. One of the reasons this is the case is because, if we are to apply principles, it is important that we all apply sound principles and apply them consistently. Breaking a promise is not a sound principle because if everyone did it then promises would come to have no meaning.

Promising and trust are important, perhaps vitally important, but they are just two of many concepts in ethics. There are also concepts such as fairness, rights, obligations or duties, loyalties, responsibility, care, consequences, virtues and values. Each ethical concept can have an impact on what we do in our working, family and social lives, but this chapter can only touch on some of them.

Ethics and culture

The word ‘ethics’ comes from the ancient Greek word ethikos, which itself comes from the word ethos. Ethos means something close to custom or habit whereas ethikos means to be moral or to show moral character. So, from as far back as early Greece, ethics refers to such things as ‘moral character and behaviour’ and recognises that behaviour is influenced by the customs or habits of the society or culture that we live in. In this way, ethical behaviour is not something that always looks and sounds the same in all societies or cultures. However, although what is right or true in one culture may not be right or true in another, this does not mean that ethics is purely relative to the culture we live in: there are ethical concepts that cultures have in common. In countries that have a Confucian understanding of ethics, respect might be demonstrated through observing li, the accepted rituals, customs or etiquette, or by behaving in such a way that mianzi, ‘face’ or reputation, is preserved. In Islam, the concept of akhlaq is a disposition that incorporates a requirement for respectful behaviour.

To take another example, most cultures have a concept of murder, but there may be differences in what is regarded as murder. In a particular society, it may not be considered murder if a member of one clan kills a member of another clan, but killing a member of your own clan – without going through some process of justice – would be murder. On a more everyday level, all cultures have a concept of showing respect but it may look and sound different between cultures. For example, in many Islamic societies showing the soles of your feet is considered rude or disrespectful and in many Australian indigenous communities direct eye contact may be considered a sign of disrespect.

What counts as respectful behaviour differs between cultures, and, when we encounter people from other cultures, we may cause offence without meaning to unless we take the time to find out how it is polite and correct to behave among them.

There can be much that is lost in translation between cultures: not just the translation of words, but also of actions. Every time we attempt to translate meaning from one culture to our own there is a degree of mistranslation and, as a result, we do not understand things exactly the way they are understood in the other culture. It is important to try hard to understand. This can be done by focusing on the following:

Here it is important to note that although something might be seen as a criticism or an insult it may not be meant that way: it may be misinterpreted. The first need is to understand what is meant, and why. However, it is important to remember that understanding is not the same as agreeing. It is possible to understand another person’s position without agreeing with it.

Special demands and challenges to traditional ethics

Dementia presents ethical challenges for carers. It also presents challenges to the principles that underpin Western health ethics. The most widely used of these principles are set out in Beauchamp and Childress (2009) and form the core of biomedical ethics. They are:

• respect for persons (or autonomy);
  
• bringing a benefit, not causing harm;
  
• justice (who gets what).

However, despite their widespread use and undoubted power in environments such as research ethics and some clinical environments, they are not necessarily the best tools to use in addressing ethics in dementia care. There are challenges facing the effective use of these principles – challenges that are made more difficult to address if people with dementia continue to be regarded in terms of persons who are in the process of losing their minds or their self – so an alternative way of thinking about the ideas of self and person is also needed. This alternative way of thinking is discussed later in the chapter but before considering this it is important to understand that a person requires respect.

Respect for persons

Autonomy, agency and respect

When looking at the major principles of bioethics, it is usual to begin with the idea of respecting persons for what they are in themselves and not for some other purpose; an idea most closely associated with philosophical thinking adapted from the work of Immanuel Kant (1724–1804). In adopting this idea, people are to be considered valuable for their own sake and not mere ‘things’ that can be used for someone else’s benefit.

In modern ethics, respect for persons is often interpreted as respect for an individual’s autonomy – usually understood as the capacity to make rational uncoerced and informed decisions about the things that affect their life. This is coupled to the concept of agency – the capacity that humans and many other living things have to affect the world in some way. Agency in humans is often viewed as something that we have some control over. This includes what is known as goal-directed agency, such as making a decision and acting on it. In health care environments, respect for a person’s autonomy usually comes down to making sure that each person actively consents to a procedure or action.

This sounds reasonably simple until we start to look more closely and understand that to be able to consent we must be able to understand what is involved in a procedure or an action. This is hard enough for mature, competent adults faced with having to make a decision, especially when they are under stress, or when the information is provided in technical language, or given in language that reduces complex issues and risks to a level that is too simple. But what happens when the people whom we are caring for are becoming less able to understand information, less able to make what we think are rational decisions and less able to act on their decisions? The first consideration is that being less able does not mean they are not able to make decisions. It is not a case of either being able or not able – there are shades of grey – and an approach to ethics based on respecting autonomy does not deal well with situations where rationality is not clearly present. There are also other ways in which placing an emphasis on rationality is a problem.

People who are gradually losing their abilities to reason and to act on reasoned choices are frequently regarded as, in some way, losing their self or becoming less of a person (Allen & Coleman, 2006; Cohen & Eisdorfer, 2002; Davis, 2004; MacRae, 2010). In an approach to ethics based on decisions by rational autonomous persons, it is too easy to move into a way of thinking where the obligation of a professional to protect vulnerable people overrides the very autonomy that is so important to our understanding of what a person is. There is a tendency to take over and, paternalistically, to give people what professionals think they need rather than continue to work with them to find out what their needs are.

A dilemma of personhood

The perception that people with dementia suffer a loss of self has wide currency and informs quite a lot of both lay and professional understanding of the disease. However, the idea that people with dementia are losing their ‘self’, or that they are not the same person as they were, presents a clear dilemma: a choice between two approaches, neither of which is desirable.

If a view is taken that people with dementia are in the process of losing their ‘self’, the end result of the process of loss is that the individual is thought to have no ‘self’ and comes to be regarded as no longer a person. If the end result is someone who is not autonomous, is not rational and has limited agency – in effect, a non-person – and an approach to ethics based on respect for persons is taken then there is a danger of moving people with dementia into a category where they are thought not to have the same rights as others and where, as a consequence, it is easy to think that professional carers do not have the same obligations to them as they do to other people.

If a view is taken that people with dementia continue to have or continue to be a ‘self’ throughout their life, there is a risk of putting an unreasonable burden on family carers. The burden might include:

• People are denied a proper mourning for the loss of their loved one as the dementia progresses.
  
• Carers may feel guilt or shame at their changed feelings towards the obviously changing ‘person’.
  
• Carers effectively become caught up in defining those they care for as disabled and as having a progressive deficit. The story becomes one of loss.

One of the ways to resolve a dilemma, such as that just outlined, is to identify and challenge the assumptions on which it is based. Here, a major assumption is that we have value because we are selves, or persons. But, there is no widespread agreement on what a ‘self’ is and what its loss might constitute. Either there needs to be agreement on what a ‘person’ or ‘self’ is – for example, something that is rational, aware that it exists, able to communicate, able to plan for the future and able to act on those plans – or another source of value needs to be found.

Loss of self is most commonly seen as a symptom of reducing cognitive capacity. Cognitive capacity does diminish progressively in people with dementia because that is one of the defining characteristics. however, does cognitive capacity affect the value of an individual and, if so, how? By using cognitive capacity and the ability to reason as determinants of value, there is a risk of denying relevance to emotion, embodiment and a changing inner life as well as, at a fundamental level, to existence itself.

An additional problem is that of distinguishing the symptoms of dementia from what is normal. Hughes, for example, says that ‘at the most objective end of “mental” illness (that is, in the field of “organic” dementias) … there is no hard scientific boundary between disease and normality’ (Hughes, Louw & Sabat, 2006, p. 2). If the difference between what is normal and what is a case of organic dementia isn’t easily known, how can value judgements be made about people based on whether they are one or the other – normal or having dementia?

Bringing a benefit and not causing harm

Dementia also presents a challenge for the linked concepts of happiness, benefit and harm.

Happiness is generally thought to be desirable: the more that people are happy, the better things are. Under the Greatest Happiness Principle, the most ethical way to act is in such a way that our actions bring about the greatest happiness for the greatest number of those affected (Mill, 1860). This consequentialist approach has the great advantage that it is common sense to try to maximise benefits and minimise harms. It has the great disadvantages that we cannot know in advance that our actions will bring benefit or harm and that we cannot measure happiness very well.

The Greatest Happiness Principle is commonly linked with what is known as the Harm Principle, which states that ‘the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others’ (Mill, 1860, pp. 21–2).

These two principles can be looked at along with the question of restraint for people with dementia. Restraint takes many forms, from locked doors in care facilities, to electronic tags, to physical restraints and chemical restraints – pharmaceuticals. Often the justification is to protect people from self-inflicted harm but, following the Harm Principle set out by Mill, the only justified reason is to prevent harm to others. However, not all restraints are put in place to protect others. And the idea that the community has a responsibility to protect people from themselves is highly controversial. If we really took this idea to heart, where would it end? No one would be allowed to drink alcohol, drive cars, smoke cigarettes or do extreme sports because they all are highly likely to cause harm to those doing these things.

If putting people with dementia in secure care, with or without other restraints, is thought of in terms of the Greatest Happiness Principle, it could be argued that the general community is better off – is happier – by not having to deal with increasing numbers of people with dementia of varying severity. This has to be weighed against the possible harms or benefits to people with dementia – but that is not so easy to do either. If the projected increased happiness of the general community is thought to outweigh the cost or harm to the people placed in secure care, then the Greatest Happiness Principle would justify restraining people with dementia. But how can happiness be measured? To be clear, the happiness being discussed is really better thought of as ‘well-being’. It is not the sort of momentary joy someone might get from winning a raffle or getting good news about a medical test. Even so, how can it be measured? Can the total benefit to the community, in having people with dementia restrained, outweigh the negative effects on well-being from restraining them? The simple answer is that it can’t.

The Greatest Happiness Principle underpins the approach to ethics called ‘utilitarianism’, a variety of consequentialism, where the consequences of a decision or action are taken to be the most relevant consideration. One of the most commonly voiced types of utilitarianism is ‘preference utilitarianism’, where the satisfaction of a person’s preferences – what is in their best interests – is the key to their well-being. But how do health professionals ensure that they are fully aware of the preferences of people with dementia and whether those preferences should be met, given that many people simply do not always know what is in their best interests? How do people with dementia ensure that their preferences are satisfied when their agency, their ability to act, is declining and the structures of care increasingly take power away from them? How do professionals ensure that preferences are addressed when every person’s experience of satisfaction is unique? And how do they overcome the prejudice that preference utilitarianism has in favour of rational, autonomous agents – people who can make the sorts of preference choices required?

These are difficult questions. The main point of asking them here is to highlight that, as long as primary consideration is given to the idea of a person who is a rational, autonomous agent, professionals will struggle to address adequately the ethical issues in dementia care.

Justice

The final concept in Beauchamp and Childress’s list of principles is justice. This is a highly important concept in ethics but it is also a hugely difficult concept to understand. The idea goes back at least to Plato and his book The Republic. Although there are many ways to think about justice, in health ethics the concept is commonly concentrated on distributive justice: who gets what and when they should get it. It is a major feature of health policy and politics.

From a policy perspective professionals might ask whether funding for aged care should be increased as the population ages. And, similarly, whether funding for dementia care should be increased as the numbers of people with dementia increase. The money available is limited, so to provide more funding, more money needs to be found from somewhere. Usually this means reducing money spent on something else – but what should be cut to pay for aged care and dementia care, and on what basis should the decision be made? What principles should guide this decision?

One approach to justice involves a thought experiment called the ‘veil of ignorance’ (Rawls, 1971, pp. 136–42), where we imagine that we are behind a curtain or veil and have to come up with principles that our community or society should operate by. When the veil is taken away we take up roles in the community. But before the veil is removed we do not know if we will be male or female, young or old, qualified or unqualified, well or unwell, cognitively sound or cognitively impaired, English speaking or non-English speaking, African or European and so on. When the veil is taken away, and those affected have to take up roles that they did not choose, they have to be satisfied with the principles under which they have chosen their society to operate. This applies whether they find themselves as a day labourer, a homeless person with dementia or a neurosurgeon. If a principle of survival of the fittest is chosen, will they be satisfied when they find out they are old and losing their memory? If a principle of individual responsibility and user pays is selected, will they be satisfied if they are single, sick and without assets? If a principle that the government should pay is favoured, will they be happy to pay the taxes?

So, what principles should be adopted to ensure that people live in a just society with a just solution to the problems that aged care and dementia care present? There is no easy answer and some of the key principles of ethics, when applied to dementia, do not really help to resolve the problem. However, one area – the ethics of care (Gilligan, 1982; Held, 2006; Noddings, 2002) – offers some hope because it does not focus on rules and rational judgement alone, but recognises that emotional attachment and relationships are also highly important. Before looking at ethics of care more closely, it is important to address in more detail what a person is.

Self and personhood

Since at least the influential work of Tom Kitwood (1997), person-centred care has been significantly important for those working in dementia care. However, a number of ethical issues with dementia relate to the idea that those with dementia are in a process of losing their ‘self’, something that Herskovits (1995) says is implied in the very idea of Alzheimer’s disease. For Davis (2004), Kitwood’s attempt to preserve a sense of personhood – or ‘persons-without-awareness’ – in people with dementia can damage or delegitimise the feelings of carers, who do not recognise any semblance of the relationship they used to have with the one they are caring for. The perception of loss of self presents a problem for the welfare of people with dementia as it can lead to depersonalised treatment (Ashworth & Ashworth, 2003; Kontos & Naglie, 2006; Millett, 2011) and possibly abuse.

However, there is confusion about the meanings of the terms ‘self’, ‘selfhood’ and ‘personhood’, and they are often used interchangeably. While questioning what a self is may seem to be an abstract activity, it does relate to problems of practical importance. One is the problem of what is in the best interests of people with dementia. An interest is a capacity to be harmed or benefited, and inflicting harm is a violation of an interest (Feinberg, 1973, p. 26). But do we try to satisfy the preference interests of someone – what they want to do – or their welfare interests? Welfare interests are also known as vital interests. They are basic interests because if they are not satisfied we will suffer and may even die. This makes them more morally relevant than other interests.

When questioning what is meant by the terms ‘self’ and ‘person’, it is pertinent to ask whether having any special cognitive property, such as being self-aware, brings a special moral status. If it doesn’t, as for example Tom Beauchamp (1999) argues, there is a need to look beyond the idea of a ‘self’ or ‘person’ for the source of moral value.

To understand the problem of the idea of a self, the Scottish philosopher David Hume is a good place to start. Hume ([1739]1978) argued that people do not have any idea of ‘self, …’ (p. 251) but rather ‘are nothing but a bundle or collection of different perceptions’ (p. 252) and their minds are ‘a kind of theatre, where several perceptions successively make their appearance’ and which have ‘no simplicity … at one time, nor identity in different’ (p. 253). That is, a self is not one single thing and is not the same right now as it was a year ago or will be in a year’s time. Hume (1978, p. 252) also considered perception to be fundamental:

For my part, when I enter most intimately into what I call myself, I always stumble on some particular perception or other, of heat or cold, light or shade, love or hatred, pain or pleasure. I never can catch myself at any time without a perception, and never can observe any thing but the perception.

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