EXPLORING RELATIONAL (AND REMAINING) AUTONOMY FOR PEOPLE WITH DEMENTIA.

• Date: 01 January 2019
• Author: Davidson, Hope

I INTRODUCTION

The law's conception of a person as being an 'individual autonomous agent' in a decision-making process often does not reflect the experience of persons with dementia and other long-term illnesses. It would appear from research studies involving people with cancer and with dementia that decisions in long-term illness are often made on a shared basis--shared both with healthcare professionals, and with families and loved ones. An alternative to the law's individualistic account of autonomy is 'relational autonomy,' (1) an account of autonomy which recognises our mutual inter-dependence and suggests that we are both enabled and constrained in our autonomous decision-making by our relationships with those around us. A relational account of autonomy may, for many people, provide an ethical foundation for decision-making that is more appropriate than the traditional individualistic account. This is perhaps particularly so in the case of people in the earlier stages of dementia for whom autonomous decision-making can be enabled and facilitated with support from others. For persons with more established dementia, however, a relational approach to autonomy may increase vulnerability to marginalisation in the decision-making process--whether intentionally or not--by shifting the focus away from the person with dementia. This article suggests that, for persons with more established dementia, an inability to make a legally autonomous decision (even with support) should be honestly acknowledged. In these circumstances, support for autonomy is best achieved by ensuring that the person's remaining autonomy and her previous expression of autonomy are central to decision-making. (2)

Where remaining autonomy (referring to the views a person is currently able to express notwithstanding a lack of legal autonomy) comes into conflict with previous expressions of autonomy (before the loss of legal autonomy), this approach requires their reconciliation. The law has traditionally been protective of previously expressed wishes and feelings, beliefs and values, (3) but if we are serious about continuing to respect the autonomy of the person whose dementia is more advanced, we also have to find a way of ensuring that the person's current expressed wishes and feelings (4) or will and preferences (5) play an important role in the decisionmaking process.

II LESSONS FROM PRACTICE

Decision-making in relation to medical care is naturally focused on the doctor-patient relationship, (6) but evidence suggests that families also play a key role in decision-making in the contexts of long-term and serious illness. (7) Gilbar conducted a widely-cited qualitative study in six NHS trusts in England measuring the degree to which patients with serious long term illnesses involved their families in decision-making in serious illness. The study was based on in-depth interviews with both patients and their relatives. (8) The results of this study, and a subsequent study conducted by Gilbar and others with breast cancer patients and their husbands, (9) found that families play an important part in decision-making, to differing degrees.

In the NHS study, (10) Gilbar identified three categories of family involvement in decision-making (for patients whose capacity was not expressly in question):

(i) ' Substantial influence': In some cases had their relatives not supported them, patients would have struggled to make the decisions they made.

(ii) 'Moderate influence': The relatives' views were important but not the overriding factor. The patients in this group made their decision in a social context.

(iii) 'Minimal influence': The relatives provided emotional and functional support but did not have an impact on the decision. (11)

Gilbar concluded that the "relatives' involvement in the process reflected a 'relational' (12) rather than an individual perception of patient autonomy". (13)

Persons with dementia are, as Harding observes, "more likely than most adults to be in specific relations of dependency: they are likely to be reliant on others for the provision of care and for support in order to retain their independence and dignity." (14) Their relational context is therefore particularly important to them. There is relatively little research on the involvement of persons with dementia in decision-making processes; most studies so far have concentrated either on decision-making capacity or on the responsibilities of the substitute decision-maker. A body of research providing some insight into the decision-making process from the perspective of the person with dementia (15) and his/her family members and loved ones, is beginning to develop, however. In 2016 Miller et al (16) conducted a review of empirical findings concerning persons with dementia and their family carers in the health and social care decision-making process, with a particular focus on the involvement of the person with dementia in the decision-making. (17) The authors found that, while persons with dementia were frequently excluded (18) from the decision-making process, this was not always the case; in the earlier stages of dementia and for less serious decisions the process was often one of shared decision-making. (19) Miller et al found that "the most likely scenario for persons with mild dementia is a shared decision-making process and a consensus decision with a family carer", and that for "persons with moderate dementia, family carers are more likely to either check-in before making final decisions or make the final decisions alone." (20) In one Norwegian study researchers found that shared decision-making was the most common, while individually autonomous decision-making also occurred. (21) While people with dementia made decisions about simpler care decisions, major decisions such as medical treatment or moving decisions were inevitably shared or ultimately taken by the family. (22) The seven studies of dementia and medical treatment specifically (23) found that persons with dementia prefer a process which is shared between their family carer, their doctor and themselves, (24) whereas the majority of family carers indicated that they would make the final medical decisions alone and may or may not involve the person with dementia in the process. (25) In the two medical treatment studies that involved both patients and their families, researchers found that although most people with dementia wanted to participate in decision-making together with their family carers they did not do so once their dementia progressed beyond the mild or early stages. (26) The studies examined suggest that while families tend to make the more serious decisions as dementia progresses, people with dementia want to be involved in decision-making processes during this period.

III EXPLORING RELATIONAO AUTONOMY

The findings from Miller et al's survey of dementia research (in common with the findings from Gilbar's cancer studies) indicate that when autonomy is exercised by persons with dementia it is often exercised in a shared or supported way. This suggests a degree of disharmony between law's emphasis on 'individual autonomy' in decision-making and the way in which doctors, and patients and their families view autonomy and decision-making in the context of long-term illness, including dementia. This disharmony raises the question of whether law's emphasis on individual autonomy in the informed consent process reflects the reality of desired/chosen patient practice and, therefore, whether law is justified in continuing to prioritise individual autonomy. While a focus on individual autonomy arguably remains the best way to keep the person (with or without dementia) at the centre of the decision-making process, it ' seriously constrains how we may conceptualize those who are not fully autonomous and how they are treated as a result.' (27) The challenge is whether autonomy itself can be re-cast or re-interpreted (28) in a way that more accurately reflects decision-making in practice for people with long term-illnesses such as dementia, without divesting it of its essential meaning--of auto nomos or self-rule. (29)

Relational conceptions of autonomy (as an alternative to individualistic autonomy) provide the basis for re-thinking autonomy in a way that is conducive to the exercise of autonomy in dementia, particularly during the earlier stages. A relational approach to autonomy seeks to understand a person not as an isolated individual but rather as a person in the context of their relationships. It is an approach which, rather than prizing individualism, recognises that we are all inherently interdependent. A relational approach recognises that people are both enabled (30) and constrained (31) in the exercise of their autonomy by their relationship context. Most people, as the Nuffield Council on Bioethics observed in their report Dementia: ethical issues, (32) 'do not make "autonomous" decisions in isolation: rather they come to decisions supported by those close to them and in the light of those relationships.' (33)

The origins of a relational approach to autonomy derive from cultural or difference feminism (34) and from the 'ethic of care.' (35) The ethics of care is a normative ethical theory developed by and associated with the work of feminist theorist Carol Gilligan. In her seminal text In a Different Voice, (36) Gilligan drew on empirical research with women and girls to identify a female ' different voice' which prioritised and understood morality in terms of relationships and care for others rather than the traditional (male) conceptualisation of ethics and morality in terms of justice and individual rights. (37) An ethics of care approach, applied to healthcare, 'rejects the centrality of autonomy in bioethical principlism"' (38) in favour of 'positively valu[ing] the activity of caring and responsibility to care. ' (39) This effectively means that persons should not be...