Ethical issues in the care of people with dementia

The RCGP curriculum and ethical issues in the care of patients with dementia

The professional topic guide: Consulting in general practice highlights the following issues for GPs:

Effective communication with your patient and their advocates, including carers, is essential for good care

Introduction

Dementia has various types and is a syndrome of cognitive decline characterised by memory loss, cognitive decline and progressive functional impairment (Prince et al., 2014). In 2015, around 47 000 000 people were living with dementia worldwide (Prince et al., 2016), with 850 000 being in the UK (Prince et al., 2014). This number is predicted to rise, creating immense cost for healthcare systems, not to mention the personal costs both for those diagnosed and their families. Most of the care of patients is provided in the community.

The nature of dementia raises many deep philosophical issues that bear on important ethical problems. This article explores the foundations of personal identity and how they are altered by the development of dementia. From here, the article considers autonomy, advanced directives and making best interests decisions in dementia. Finally, a number of ‘everyday’ issues are explored.

Personal identity and dementia

For me now, any question of identity becomes profound and difficult. Without memory you lose the idea of who you are. I am struggling more than ever to find answers to questions of identity. I am flooded with early memories preserved in protected places in my brain where Alzheimer’s does not reign supreme. These memories become the last remnants of my search for who I am (DeBaggio, 2002).

Philosophers tend to distinguish numerical from qualitative (McMillan, 2005) or narrative identity. Numerical identity relates to sameness over time. What makes you the same you as 10 years ago? Narrative identity refers to the characteristics that we take as being important in answering the question: ‘Who am I?’ In the numerical sense I am the same individual that started medical school, but in the narrative sense, I am not the same person that finished. Both senses of identity are important and can have consequences when thinking about ethical problems related to the care of people with dementia.

Numerical identity has been argued to consist of one of two factors - bodily integrity or some mental phenomena. Some philosophers, such as John Locke, argue that memory is the link that makes individuals the same person over time (Locke, 1689). Memory is fallible, however, and though I have forgotten much since starting medical school, I hope I am the same person. Others have considered alternative psychological phenomena as the basis of numerical identity. Derek Parfit for example, argues for ‘psychological continuity [which] is the holding of overlapping chains of strong connectedness’ (Parfit, 1984). If there is no psychological connection between me at the start of medical school and me now, we are different people. Dissatisfied with an account of numerical identity rooted in psychological criteria, others have argued that sameness of body is what matters in survival over time (DeGrazia, 2005). Because I am the same human organism numerical identity is retained.

Narrative identity more closely tracks what we think about when we reflect on identity. Anthony may have been a teacher, a gardener or a ‘heavy metal’ fan and Sally a ‘Trekkie’ or a pianist, dimensions to identity which all matter greatly for who we are. Our narrative identity is the story of ourselves over time, a biography with you as the protagonist (Glover, 1988). However, this is more than merely a list of personal facts. Narrative identity refers to the rich tapestry of experiences that are coloured by our characters, values, beliefs and desires that make us what we are. Moreover, we care about who we want to become, and as such we rely on our narrative identity to inform and shape our future selves. How our narratives are created and sustained is not a solo project. Our close relationships play a part in defining who we are and shaping the stories that make us.

A number of clinicians and philosophers have provided accounts that combine aspects of numerical and narrative identity to provide a richer account of identity. Julian Hughes, for example, has developed the, ‘situated embodied agent’ view of the person with dementia (Hughes, 2001). This sees the person with dementia as being situated in a certain social and historical context, as having bodily continuity and therefore as retaining a sense of identity. This means that because identity is situated in a certain body, life history and relationship to others, even in the later stages of dementia identity is retained in an albeit limited way (DeGrazia, 2005). More radically, Richard Holton’s arguments combine aspects of numerical and narrative identity to argue that an individual’s memory can be ‘buttressed’ by others with whom they have deep connections (Holton, 2016). In this way, others can bolster memory retention and thereby help maintain identity through maintaining psychological connectedness. If Holton is right, this has important practical implications in how doctors utilise patients’ relationships with others.

The effects of dementia on both senses of identity have implications for autonomy, advanced decisions, best interests and how we see individuals with dementia. Some of these will be explored in this article.

Autonomy and dementia

Autonomy is often considered the central ethical principle in Western medicine. In spite of this it remains a contested concept. Autonomy translates literally as ‘self-rule’ and has been defined by Raanan Gillon as, ‘the capacity to think, decide, and act on the basis of such thought and … freely’ (Gillon, 1986). This minimum concept of autonomy provides two criteria for being autonomous: having rational capacities; and freedom from interference (meaning freedom from coercion).

There are two main ways that the cognitive impairments characteristic of dementia can undermine the rational capacities necessary for being autonomous. First, autonomy requires that one can understand information and act on it based on some process of rationality. The attentional issues and cognitive processing problems associated with dementia can prevent patients from understanding or utilising the information to decide for themselves. Second, when people with dementia express their desires we may suspect that such desires are not truly autonomous. We may wonder about wishes that seem unstable and changeable, or have doubts over whether what the patient desires is an expression of what matters to them (Holm, 2001).

As there are two routes for dementia to erode the autonomy of individuals, it is easy to assume that a diagnosis of dementia equates to an inevitable loss of autonomy. Such an assumption must be resisted given the significance of autonomy. Competence to make a decision depends on the question at hand, and for certain decisions the person with dementia may retain autonomy late in the disease. Moreover, although medicine has limited power to halt dementia’s effects on cognition, there may be other ways to bolster the autonomy of the person with dementia.

We often share decisions with those closest to us; we ask for their advice and allow them to use their understanding of us to interpret what they believe would best align with what matters to us. As we have seen, Holton argues for the idea that our identity itself is rooted in a network of connections with others. If ones sense of self can also be rooted in their social and historical context, a form of ‘relational autonomy’ grows out of, and is bolstered by, these networks (Mackenzie and Stoljar, 2000). What this means is that for the individual with dementia their social relationships have a role in sustaining and supporting their autonomy by providing the foundations of self. As Marilyn Friedman explains:

according to the relational approach, persons are fundamentally social beings who develop the competency for autonomy through social interaction with other persons. These developments take place in a context of values, meanings, and modes of self-reflection that cannot exist except as constituted by social practices (Mackenzie and Stoljar, 2000).

Case 2 raises a number of difficult issues around deciding what is best for Sally and what her family’s role ought to be. The overarching question is what, if any, investigations and treatment should be offered to Sally? The answer to this depends on the answer to a number of other questions. The starting point should be asking whether Sally is autonomous – able to use the information provided to her to decide what is best for her based on her values and desires. If she is able to make decisions for herself then this ought to be respected absolutely for its indication of what she believes is best. Even if she lacks capacity, if Sally is able to express her wishes, these wishes ought to be taken into consideration. If she lacks capacity, then what is in her interests? As I will discuss below, assessing best interests in dementia is difficult in light of changes of identity. Clearly, in this case Sally’s family has strong ideas about what is in her best interests and what Sally might have wanted. As members of her family, on Holton’s account of identity they can help sustain her identity through their knowledge of her which is very helpful for the doctor trying to make decisions. There may be many reasons for their refusal, which are important for the GP to explore and understand. The relational autonomy approach would take the family’s view as forming part of Sally’s extended self, thereby providing valuable information to be blended with the clinician’s perspective in making a decision.

Advanced decisions in dementia

Advance directives (ADs), sometimes known as ‘living wills’, provide an opportunity to make clear what people’s wishes are should they lose decision-making capacity. Provided that certain, albeit stringent, criteria are fulfilled (Brazier and Cave, 2016), the Mental Capacity Act obliges clinicians to follow these wishes (Johnston and Liddle, 2007). Nevertheless, such decisions raise two ethical concerns. The first concern is about the authority of ADs. If the individual with dementia has changed from the person who made the AD, from where does the AD derive its authority? The second is that, even if the individual with dementia is the same person over time, in spite of their AD they may come to find life acceptable, but will have lost the capacity to revise the earlier choice, creating a conflict between past and current desires. In this section I will briefly consider what grounds the authority of an AD. In the next section, conflicts between past and current desires will be explored in the context of best interests.

There is a large literature exploring the authority of ADs in light of identity change. Ronald Dworkin provides an influential account that distinguishes ‘experiential’ from ‘critical’ interests (Dworkin, 1993). It is the latter that matter for autonomy and respect for persons and persists over time by transcending identity loss including death, for example. Let us imagine that Anthony (case 1) had written an AD refusing all life-sustaining treatments should he develop dementia. Dworkin would agree that the day-to-day pleasure he experiences by interacting with the staff — his experiential interests — are important. Nevertheless, Anthony’s critical interests; his beliefs and values that provide meaning and coherence to his life, are the most important, and as his AD reflects his critical interests, it ought to be respected. Although Dworkin answers why we might respect an AD in spite of identity change, others have questioned the significance individuals place on critical interests and argue that although critical interests might prove useful in making decisions for others they cannot simply provide the answer (Dresser, 1995). Experiential interests can be equally if not more important in those who cannot decide for themselves.

The questions raised about ADs by dementia are both interesting and challenging. For GPs, the most important question regarding ADs is whether refusals are legally valid, as in this case they must be respected. Nevertheless, many patients do not have an AD, although they have clearly expressed wishes in the past, like Anthony, and this circumstance demands further attention.

Best interests and dementia

Thus far it has been argued that steps can be taken to help individuals with dementia retain their sense of self and autonomy. Nevertheless, we may believe that some people with dementia are not autonomous. This does not necessarily lead to the conclusion that their desires and feelings can simply be ignored. These are important components of well-being and so some weight ought to be placed on these even if they are not considered truly autonomous. The legal framework for making best interests decisions for patients lacking capacity, the Mental Capacity Act (MCA), supports this approach.

The MCA lists factors to be considered when acting in somebody’s best interests (Box 1), but it does admit that the list is incomplete and not exhaustive (Johnston and Liddle, 2007). Moreover, ‘best interests’ remains undefined by the Act. It is understandable, therefore, that clinicians can struggle to apply the MCA in practice. This is especially difficult when thinking about people with dementia. Clearly, people with dementia still express desires or wishes either through words or actions. However, they may also have informally expressed desires for the future previously, like Anthony. Not to mention the views of their loved ones. All these factors must be considered according to the MCA, which is fine if they all align. However, this leaves plenty of room for conflict, for example, where past and present desires (points two and three, Box 2) conflict or where the views of others concerned with the person’s welfare conflict with those of the healthcare professionals. Working through these conflicts is the aim of this section.

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Box 1.

Determining best interests: A summary from section 4 MCA.

Factors to take into account when determining a person’s best interests include:

• The person’s past and present wishes and feelings (in particular any relevant written statements made before loss of capacity)

• The beliefs and values that would be likely to influence the person’s decision if they had capacity

• Other factors they would be likely to consider if they were able to do so

• Where practical and appropriate, the views of a number of others concerned with the person’s welfare as to what action would be in the person’s best interests

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Box 2.

Guidance on making best interest decisions.

• The person’s wishes when he or she had capacity

• The person’s values when he or she had capacity

• The strength with which he or she held these wishes and values

• His or her current wishes. (It is important not to assume that just because the person lacks capacity, he or she lacks any relevant wishes)

• His or her current values, including current lack of understanding or awareness of previous values

• The strength with which he or she holds these wishes and values

• The person’s current, and likely future, experiences (e.g. of pleasure and pain)

• The nature of what we have to do in order to follow the previous wishes and the likely impact of that on the person’s current and future experiences.

• In making the judgement as to how much weight to give each of these considerations it is important to take account of the degree of evidence for each consideration. As the MCA Code of Practice makes clear (section 5.40) relevant evidence includes current behaviour and expressions of pleasure as well as evidence about past wishes and values.

Reproduced from Journal of Medical Ethics, Hope T, Slowther A, Eccles J. 35:733-738, 2009, with permission from BMJ Publishing Group Ltd.

Before moving on to tackle this difficult question of best interests, it is worth setting aside one line of argument which has so far remained untouched. For some philosophers, changes in personal identity can lead to loss of personhood and therefore moral status (Harris, 1985). This has radical implications for determining best interests if the individual with dementia is a non-person. It may be the position taken by some relatives, but this is not the view of personhood taken here. The position of most GPs on this is unclear, but this line of argument is not here pursued further.

Conflicts between past and present desires

It is not unusual to find situations where the person with dementia’s contemporaneously expressed wishes conflict with those of the past. This is the circumstance for Anthony. Given that the MCA tells healthcare professionals to consider both, this creates a dilemma, so how can we move forward? One option is to follow previously expressed desires. If somebody has previously said they believe that dementia is not compatible with what they consider to be a life worth living, then we ought to use this as a basis for determining what would be best for them. As we have seen, however, this is subject to challenges from changes in personal identity. Moreover, many doctors might see ignoring their current desires and not treating a potentially life-threatening infection in a person who appears happy and content as conflicting with the doctors’ other duties of non-maleficence and beneficence.

Pursuing this line of thought does highlight that people with dementia often have desires and preferences regardless of their capacity. Clearly, having dementia does not render one entirely incompetent in all matters regarding one’s life. The fact that an individual with dementia does have desires does not of course mean that these should automatically be followed, even if desire-fulfilment can be an important part of well-being. Moreover, the dementia itself gives us pause to ask the aforementioned question: Are such desires authentic? The fact that they do have desires demands that they are carefully weighed and assessed in light of what is at stake and the potential harms of dismissing their desires.

Alternatively, doctors can attempt the hypothetical thought experiment advised from the MCA in points two and three, known as substituted judgement. Here we imagine what decision the person would take were they to magically regain capacity holding all the other facts the same. If Anthony was to suddenly regain capacity and know he was happy and content in his life with dementia, would he change his mind? Such a question seems close to impossible to provide a meaningful answer to and very likely raises more questions than solutions (Hope et al., 2009).

The picture that should be emerging so far is that focusing on a single metric of determining best interests may be problematic, or at least inadequate. According to Søren Holm, judgements about best interests rely on several factors that will include both previously expressed and contemporaneous desires, in addition to other components of well-being such as the pain and pleasure brought about by the decision (Holm, 2001). Weighing the strength of each of these considerations in order to make a decision in light of the salient clinical facts of the situation is no small feat. Helpfully, Hope et al. (2009) and Nuffield Council on Bioethics (2009) both provide an operationalised checklist of factors to consider when making best interests decisions for the individual with dementia that embellish those provided by the MCA. See Box 2 and Box 3, respectively.

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Box 3.

Considerations in making best interest decisions

• How important is the issue at stake? For example, maintaining a person’s religious practice or moral beliefs is likely to have been much more important to them than issues of aesthetics, taste, or smartness of dress

• How much distress or pleasure is it causing now? If maintaining a past belief is causing major distress, then it is likely that the person’s current well-being and not their previous autonomy interests should take precedence

• Consider the underlying values or beliefs on which the earlier preferences were based. Have they genuinely changed or can they be interpreted in a new light? It may be the case that the person is expressing ‘old’ views or preferences in a different way

• Explore whether the apparent changes in preferences or values result from psychosocial factors (such as fear) or directly from the dementia (such as sexually disinhibited behaviour), or whether on the other hand they are linked with a genuine pleasure in doing things differently

Reproduced from Nuffield Council on Bioethics (2009) , with permission.

Everyday dilemmas in care

There are a number of everyday ethical dilemmas that arise when providing care for individuals with dementia. Some of these will be dilemmas for GPs and some will be dilemmas that GPs may witness or become involved in through supporting carers. The approach in this section is informed by the Nuffield Council on Bioethics report on dementia (Nuffield Council on Bioethics, 2009).

Confidentiality

Concerns about confidentiality are particularly relevant and ever present in our work as GPs. This is especially so with dementia, especially where families and carers rely on information to support the person with dementia.

Respect for confidentiality is a corollary of respect for autonomy, as a right of self-determination entails a right to control how your own information is used (Knight and Papanikitas, 2018). Moreover, confidentiality is central to the relationship of trust held between doctor and patient. Clearly, individuals with capacity ought to have their confidentiality respected. However, respect for autonomy also means that individuals should be informed of the importance of information sharing and be encouraged to disclose. General Medical Council guidance and the law makes clear that disclosure of confidential information against the expressed wishes of the individual should only be done where there is risk to others (General Medical Council, 2017). This circumstance is relatively unusual in dementia. However, patients should be informed where disclosures without consent are to be made and participation in this decision should be made according to judgement on the individual’s ability to contribute.

For the patient without capacity, disclosures must be made only if it is in the person’s best interests. Given the importance of information for provision of good care to patients with dementia, a pragmatic approach to sharing information to aid care is often justified. Although professional guidance suggests that presumption of confidentiality ought to prevail, openness between the GP and those caring for the individual is important for providing care and therefore promoting the patient’s interests but may also be of value in fostering trust.

Conclusion

The nature of dementia raises many philosophical questions that may ultimately inform answers to various ethical questions that arise when caring for people with dementia. With so many elements to consider, clear and simple answers are not always easy to find (British Medical Association, 2019). Given the long term relationship between GPs, their patients and their families this article has focused on how this perspective can help bolster patient autonomy and an approach to what is in the best interest of patients. More specific guidance has been given to tackling some everyday dilemmas that caring for those with dementia presents.

KEY POINTS

Memory loss, poor attention-span and reduced impulse control can make consent problematic for GPs treating people with dementia