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PART 3 - Tackling ethical dilemmas

2014: Ethical dilemmas faced by carers and people with dementia

At the end of Part 1, we mentioned a more holistic, care approach to ethics which takes into consideration the whole person (i.e. their uniqueness, their relationships to others and their dignity and vulnerability) and the unique situation. Now, in Part 3, having explored several potential ethical dilemmas and provided ethical commentaries on them, we look in more detail at this care ethics approach, present a step-by-step guide to tackling ethical dilemmas and finally, provide a few ideas about how to avoid some mental traps and thus maximise our potential to address ethical dilemmas.

A care ethics approach

In the following sub-sections, we describe an ethical approach based on the work of Gastmans (11) and incorporating the role of conscience developed by Hughes and Baldwin (10). The former was mainly developed in the context of formal care but could equally apply to many ethical dilemmas which occur in everyday life. The list below highlights the main features of this ethical approach which are then discussed in more detail below.

The main features of our ethical approach

  • The lived experience
  • The interpretive dialogue
  • A normative standard reflecting
    • Vulnerability
    • Dignity
    • Interdependency
    • Relationships
  • Our informed conscience

The lived experience

Every person is different and every situation is different. Even in situations which seem quite similar, people make sense of them in different ways and have different emotional reactions and concerns. A person’s “lived experience” is the way he or she experiences a particular situation or difficulty and what his or her life is like.  

The interpretive dialogue

In order to understand a person’s lived experience, it is necessary to establish an ‘interpretive dialogue’. This involves listening to everybody concerned and trying to understand the perspectives of each in relation to the ethical dilemma. In many cases it is not clear what people want or what is important to them. It might not even be clear in their minds. Some people may seem to be quite ambivalent about some issues. The impact of dementia on the ability to understand and communicate makes this process even more difficult for the person with dementia. For this reason, it is important not to take what a person says unquestioningly at face value but to allow time for discussion, and to consider people’s feelings, their fears, their understanding of the issues at stake and their personal histories, known values and character.

A normative standard reflecting vulnerability, dignity, interdependency and relationships

Behaving ethically and dealing with ethical dilemmas requires some kind of normative standard (i.e. an agreement as to what is good and bad, ethical or unethical). In this respect, ethical principles and values are important as well as a perspective on humankind (i.e. what it means to be human). The principles-based approach to ethics mentioned earlier, which tends to emphasise respect for autonomy and people as independent agents, may not be readily applied to living with/caring for dementia. Instead, a care ethics approach may apply. This emphasises vulnerability and dignity, as well as people being interdependent and existing in relation to other people. A key question is “how can I treat this person in such a way that I express my respect for him or her?”

Vulnerability and dignity: Vulnerability is as an essential part of the human condition and something that is closely linked to a person’s lived experience in that some people, at some stage in their lives, will be more dependent than others. According to Gastmans, (11) people with dementia are vulnerable with regard to the psychological, relational, social, moral and spiritual dimensions of their being. This will be the case regardless of whether the person is cognitively aware of vulnerability. This vulnerability may threaten the person’s dignity and lead to dependence on others. The vulnerability of some people has been described as a source for the moral responsibility of others towards them (12), especially in situations where their dignity is threatened and they are not in a position to elicit respectful attitudes or behaviour from fellow human beings (11).

Interdependency: Agich (13) suggests that “because we culturally prize independence, it is natural to view dependence as a deficit” (p.103).  Dependence has come to be perceived as something negative even though we are all dependent on each other in daily life (e.g. for the food we eat, the cars we drive, clean water and the emotional and practical support we give to each other). Most of us were cared for as children and protected from danger. As adults we may have received maternity care or had accidents or illnesses requiring medical and nursing care. People gradually need more care as dementia progresses but this could be viewed as part of the overall interdependency of everyday life, even if it is sometimes perceived as a burden to families or society. Challenging the emphasis on independence and removing the negative connotations surrounding dependency may contribute towards greater awareness of other issues which are important to people with dementia and carers and relevant to ethical dilemmas.

Relationships: Ethics is not just about isolated individuals. A person can, in principle, be considered as an individual autonomous agent. However, the capacity to act autonomously can be lost as a result of dementia. Few of us live in total isolation from other people. As mentioned earlier, people are mutually dependent on each other and connected by relationships. Indeed, the capacity to form relationships and the connections we make with other people are essential aspects of being human and part of our lived experience (10).

“It is crucial to recognise that the life of the person with dementia and their carer will often be very closely entwined, particularly where informal care is being provided by a partner, or by a relative living in the same house. In such circumstances, the interests of the person being cared for and the person providing the care will often be inseparable, and this may have significant implications for how the various needs and interests at stake are balanced and compromises sought.”  (Nuffield Council on Bioethics, 2009, p115) 

Caring is not necessarily a one way process with one person giving and the other receiving (11). It is something which takes places between different people. People with dementia not only accept care that is offered but often give something back in the form of acknowledgement, gestures or in other aspects of daily life. The reciprocal aspect of care (i.e. giving as well as receiving) may become increasingly difficult for people with dementia and attempts to give may not always be recognised by carers (14) (15). However, carers often understand or assume that people with dementia are unable to do so and do not expect something in return. For many, caring is just one aspect and moment in time of an existing, on-going relationship. 

Carers often make sacrifices in order to care for the person with dementia. However, every person has their own intrinsic value and dignity, and is morally justified in protecting their own interests (5).  It could therefore be seen as questionable for someone purposefully and totally to sacrifice their own dignity, health and wellbeing for that of another person (7), however vulnerable the latter may be.  We all live in communities with economic, social and political restraints, which in addition to our own personal restraints and interests, impact on what is possible. Longneaux (7) suggests the need for humility to recognise that we are not all-powerful and to accept that we cannot always achieve what we would have hoped for with regard to the people we care about, however much we try.

Being guided by our informed conscience

We defined conscience in Box 1 as “our personal, inner judge of what is right and wrong, informed by shared understandings and practices”. The last part of the definition emphasises that it is more than the subjective, inner voice in our heads which tells us whether something is right or wrong. After all, that might be similar to having a “gut feeling” and to a misguided justification of behaviour which is not ethical at all. Hughes and Baldwin (10) suggest that conscience is also objective (i.e. based on a consideration of outside facts and shared values). Consequently, we should really be talking about an “informed conscience”, which is acquired through education, upbringing and openness. When faced with ethical dilemmas, an (informed) conscience can be helpful, not in providing direct solutions, but in guiding us through discussions with others and ourselves. It can help us to determine what the important issues are, and how to interpret and understand people’s lived experience in relation to particular ethical dilemmas.

A practical step by step approach to everyday ethical dilemmas

Ethical dilemmas can lead to a lot of thinking, soul-searching and emotional upheaval. We may feel destabilised, find it difficult to decide what to do or how to react. The following steps are based on the care ethics approach described earlier and are intended to provide a structure to help you to address relevant issues with the people concerned.

 

 
 

Last Updated: Monday 08 February 2016

 

 
 

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