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About ethics

2014: Ethical dilemmas faced by carers and people with dementia

What is ethics?

The term “ethics” refers to standards which tell us how we ought to act in various situations and how we ought to live with one another. This is often framed in terms of rights, obligations, duties, benefits to society, fairness or specific virtues (4). The standards of behaviour are based on perceptions of right and wrong or good and bad. Ethics is not just about big societal issues such as immigration, war, abortion or euthanasia which are discussed in the media. Often, everyday matters such as whether it is reasonable to ask for help, how to respect a person’s dignity, how to promote autonomy or what to do if a person repeatedly refuses to get washed also have an ethical dimension. Such everyday matters can be stressful and be persistent and urgent (5) (6). They cannot always be discussed in a detached manner as they hold direct implications for people who matter to us personally. How these issues are approached may have implications for the image we have of ourselves as a good or bad person (e.g. one might ask oneself, “was I fair, was that the decent thing to do, is my attitude to this person justifiable?”).

The right thing to do in response to an ethical dilemma will often be to “treat a person as a person” (7). There have been debates about the minimum criteria necessary to be considered as a person. Some philosophers argue that to be considered a person, someone should have self-awareness, including awareness of their past, be capable of making plans for the future, and be capable of deciding for themselves what they want to do. This has sometimes led to people questioning whether a person with very advanced dementia is still a person. Counter arguments have been put forward which criticise the emphasis on cognitive abilities and failure to give sufficient attention to the social and emotional aspects of being a person (8). The statement that an ethical approach is often about treating a person as a person is based on the premise that a human being who has feelings, even if unable to express them or to exercise autonomy, is a person.

It is important to consider also what ethics is not. According to Velasquez and colleagues, ethics is not simply about doing what feels right or abiding by culturally determined norms and it should not be equated with religion, science or following social conventions (4). Sometimes, it feels uncomfortable to do what is right. On the other hand, a person may have a good feeling about doing something and it may be in keeping with that person’s values but it would be unethical. The fact that a lot of people do something or react in a certain way does not make it right. Whilst many religions strive for ethical behaviour, they do not address all ethical issues and some religious teachings condone behaviour which some people might consider unethical. Laws have often been used to enforce actions which with hindsight and greater ethical awareness are now considered as wrong. Laws can provide certain limits for behaviour but do not dictate how to act. Moreover, legislation tells us nothing about what constitutes good care.  Finally, science may help us understand human behaviour but cannot tell us how people ought to behave.

Theories about what is right and wrong

When trying to decide what is right and wrong, we tend to rely on systems or structures of thought and belief that help us to reflect systematically and critically on human behaviour. Such deliberations are usually based on normative perspectives (shared norms and understandings) of good and bad; we therefore rely on values which are socially defined. However, at the same time we should be able to reflect critically and with compassion about what is right and wrong in a particular situation and draw our own conclusions. This may sometimes lead us to challenge the way that values are defined and interpreted within society.

Philosophers have debated these issues for centuries and have developed a number of ethical standards based on a range of theories. From some of the main theories, the following criteria have been put forward to determine what would be a “good” or the “right” action or approach, namely: 

  • that which results in the most pleasure and the least pain to those affected (utilitarian approach),
  • that which best protects and respects the moral rights of those affected (rights-based approach),
  • that which treats everyone equally or if unequally then fairly, based on a standard that is defensible (fairness approach),
  • that which is defensible based on outcomes, which would maximise people’s happiness or welfare (consequentialist approach),
  • that which contributes towards the good of the community (common good approach),
  • that which is consistent with what a virtuous person would do (virtue approach),
  • that which is in accordance with our duties as rational individuals living in interdependent societies (deontological approach).

Looking at the above list, you might wonder which would be the best approach to adopt in a particular situation. Apart from the fact that even ethicists might disagree about this, the criteria also raise further questions. Some of these are: what is the most good and the least bad for people, which moral rights should be protected, what makes a person virtuous, when is unequal treatment defensible and does the end always justify the means?

Ethical principles and values

Another approach to determining what is ethical is to consider ethical principles or values. According to the principlist approach, a person can be said to have behaved ethically if they have respected certain principles. A few decades ago a set of four principles was developed by Beauchamp and Childress (9), namely, respect for autonomy, beneficence (i.e. doing good), non-maleficence (i.e. avoiding doing harm) and justice/equity. They were intended to serve as a framework to guide professional medical ethics but have since been applied in a wide range of contexts. There are also other principles and values which are perhaps equally important in other contexts (e.g. in everyday interactions with other people, in relationships with friends and family, in social care, and in residential care settings) such as trustworthiness, honesty, integrity, compassion, well-being, confidentiality and respect for privacy, personhood and dignity.

In addition to the four widely recognised principles of medical ethics, it may therefore be helpful to reflect on a range of concepts. We have set out some of these concepts in Box 1 along with the main principles and values already mentioned.

Moving towards a more holistic approach to ethics

Reliance on principles and values also raises problems. It is still necessary to decide which values and principles should be respected or promoted. What if respecting one value or principle conflicts with respecting another? Are some more important than others? Could it also be argued that we are just picking and choosing in the sense that we do whatever we want and find the moral theory, principle or value that suits us? (10) Moreover, we might ask whether it is right to rely on abstract principles in view of the complexity of human relationships and of people’s lived experience (11).

Ethical principles, values and related concepts

Autonomy

The condition or quality of being independent. Being able to decide what should happen or be done to you.

Beneficence

All forms of action intended to benefit or promote the good of other people.

Compassion

Deep awareness of the suffering of others coupled with the wish to relieve it.

Conscience

Our personal, inner judge of what is right and wrong, informed by shared understandings and practices.

Confidentiality

Keeping information we have learned in confidence secure and private; not divulging it to other people without permission.

Discernment

Having sensitive insight and being able to make judgements and decisions without being unduly influenced by personal attachments and external influences.

Familism

The subordination of personal interests and prerogatives (e.g. specific and personal rights and privileges) to the values and demands of the family.

Historicity/Narrative

The person’s life story, what has made them who they are; what is meaningful to them based on their past.

Integrity

Strict adherence to a set of consistent moral values and principles; acting in accordance with one’s core beliefs.

Humility

Not feeling that you have any special importance that makes you better than anyone else.

Justice/equity

Treating people equally and fairly.

Non-maleficence

Not doing what might be harmful or hurt somebody.

Privacy

Freedom from unauthorised intrusion or observation.

Singularity/Personhood

What makes a person unique and determines who they are and their individual interests.

Relationality

The importance of trusting relationships. The way we experience ourselves in relation to others.

Truthfulness/fidelity

Telling the truth/being true.

Trustworthiness

The state of deserving confidence.

Virtue

An inner disposition which enables a person to live well or flourish as a human being.

Vulnerability

Being in need of special care and protection especially in situations where one’s rights and needs might not be respected.

The lived experience of dementia

Ethical behaviour in relation to caring for a person with dementia and living with dementia is more than a question of rights and duties. It cannot be merely reduced to a set of abstract principles. It is important to consider in addition the lived experiences of people with dementia and their carers (e.g. in relation to care giving, care receiving, vulnerability and dignity) which are embedded in people’s everyday lives. This approach to ethics, based on the work of Gastmans (11), is described in Part 3, where we also consider the role of conscience (10), followed by some ideas about how to avoid mental traps which may sometimes interfere with our ability to tackle ethical dilemmas. Below we provide testimonials from a person with dementia and his carer.

Stig Atle Aavik – How I currently feel about having dementia

My dementia is progressing nice and slowly. I am able to cook and do other things that people generally do. I have noticed a few changes… not for the better, more of a steady decline. Some days are worse than others, and I think a lot about my diagnosis on days like those.

My family is of great help to me. My son lives close by, my mother a little way off. They involve themselves in my daily life, and my mom supports me even though she is getting old. My family and my girlfriend have become very important to me now that I have dementia and have to depend on professionals. 

Medication is also important for me at the moment. I have asked my family doctor to make sure I get the latest medication. The medication I had earlier had a lot of side effects, so I stopped taking it. Medication can help slow down the disease, something I am very concerned about at the moment.

A sound personal economy is also very important to me. It provides me with extra security. I have plans to talk to my children about inheritance soon, and have been in touch with a solicitor. I am getting rid of possessions I do not need any more and collecting things that are important to me.

I tend to be fairly pragmatic. I look at the options and decide what I feel is right. That’s how I am. Everyone is different. At the same time, I appreciate the fact that my having dementia may affect other people and lead to situations where it is difficult for them to determine what is right or wrong and that this could at some point also have an impact on my life.  Meanwhile, on the whole, everything is fine. I have my life and I think it is a good life.

Ranveig Andrea Hoff – my experience of caring for my nephew, Stig

Stig Atle was diagnosed with Alzheimer’s disease about three or four years ago. It came as a shock to me (and to the whole family of course) and resulted in despair and deep concern.

When the Norwegian Health Association offered Stig the opportunity to represent Norway in the European Working Group of People with Dementia (EWGPWD), he accepted and then asked me if I could support and help him in this work. He means a lot to me, I have known him his whole life, so of course I said yes. The first meetings of the EWGPWD went quite well. Stig was enthusiastic and paid attention. As time has passed, he has been more and more affected by the disease, and it makes me sad and depressed to see how his condition deteriorates.

I struggle to accept this piecemeal loss of Stig, who is physically there, but has difficulties such as remembering dates and understanding the concept of time. We have travelled a lot in connection with the EWGPWD. This has become a bit of a challenge because at times, he disappears from sight but it has fortunately worked out so far. There are also times when it is difficult for me to remain calm (e.g. when he asks the same thing over and over again. It is not so easy for me to cope when he becomes aggressive, even though I know it is the disease which triggers this aggressiveness and not him.

I feel a kind of helplessness because I know he will never get better. I try to comfort him, to provide closeness and to adjust the pace to Stig’s needs. I hope to keep the good relationship we have always had even under these altered conditions. I was pleased to be involved in this project to explore the ethical dilemmas faced by people with dementia and carers as I know from experience and from other carers that it is sometimes difficult to decide what would be the “right” or ethical way to respond or react in a particular situation.

Finally, the following photo and text are taken from a presentation given by Juha Lehtinen who also has dementia. He stresses that dementia (Alzheimer’s disease in his case) is something that a person has. It may be at the root of many ethical dilemmas experienced by people with dementia and their carers but it is important to see beyond the disease to the person him/herself.

Photo: Juha Lehtinen, The Memory Association of Lapland in Finland ©

 

 
 

Last Updated: Tuesday 09 February 2016

 

 
 

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