Value judgements and conceptual tensions: decision-making in relation to hospital discharge for people with dementia

Abstract

We reflect, using a vignette, on conceptual tensions and the value judgements that lie behind difficult decisions about whether or not the older person with dementia should return home or move into long-term care following hospital admission. The paper seeks, first, to expose some of the difficulties arising from the assessment of residence capacity, particularly around the nature of evaluative judgements and conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests around place of residence, which demonstrates significant conceptual tensions. In addition, ‘best interests’ raise issues around the perception of risk and the perceptions of the family and crucially involve the notions of autonomy and trust. Finally, we not only gesture at some practical considerations based on insights from values-based medicine, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests.

Introduction

Elderly people with dementia often end up in institutions. In one study around 30% of patients aged over 65 years were admitted to long-term care in the 12 months following a medical admission.¹ In a recent systematic review, nursing home placement was predicted by a mixture of underlying cognitive and functional impairment, associated with a lack of social support.² Meanwhile, cognitive impairment and dementia are common in people admitted to acute hospital wards.³ In one American study, in the population of older people admitted to hospital, the prevalence of dementia was just over 13%.⁴ In a recent longitudinal cohort study in the UK involving admissions to a London hospital, 42% of those aged over 70 years were found to have dementia.⁵ Thus, we know that acute admissions to general medical wards in hospitals include many people with dementia, a large proportion of whom are at risk of being institutionalized as a result. How decisions are made when the person lacks capacity to decide if they can still live independently is not well understood. Clearly, such decisions are multidimensional, entailing differing perceptions on the part of the participants - particularly regarding risks, safety and the importance of autonomy.

In this paper we reflect, using a case vignette and relevant literature, on how decisions about place of residence are made when people with dementia are discharged from hospital. This is a daily occurrence. It may be taken for granted; and yet it is a complex procedure, made more so - in our view - by a lack of conceptual clarity.

First, we consider the assessment of capacity and seek to expose some of the evaluative judgements that are required and the conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests, which again demonstrates conceptual tensions. In addition, the process of determining a patient's best interests raises issues around the perception of risk and, in connection with place of residence, the perceptions of the family, judgements about best interests, notions of autonomy and trust. Much of our discussion stresses the importance of value judgements in what might otherwise seem to be objective assessments according to legal criteria. Hence, we shall make use of ideas derived from the approach known as values-based medicine (VBM). Finally, in our discussion, we not only gesture at some practical considerations, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests.

The following case is fictional, but is based on real cases.

Case: Mr Rogers

Mr Rogers is a 76-year-old unmarried man who lives on his own. He has been admitted to hospital having been found wandering in the street late at night. He was very confused at admission; it was determined that a urinary tract infection had caused his acute confusional state. Treatment of the infection brought about recovery of his confusional state, but it soon became evident that Mr Rogers had underlying dementia. It is difficult for the staff on the ward to build up rapport with Mr Rogers. He seems to be somewhat surly by temperament, which is confirmed by his niece. He will not engage with assessments. For instance, although initially he performed poorly on formal tests of cognitive function, it is clear that he would do better now. But he will never answer all of the questions and seems to give some answers in a deliberately dismissive manner, indicating a lack of interest rather than a lack of ability. His sister, who lives nearby, says that he will be able to manage when he goes home - and she adds that she can help him. His niece, however, says that he was not managing before admission. She is worried about the strain on her elderly mother (his sister). An occupational therapist finds that his home is quite squalid, but Mr Rogers is dismissive of any suggestion that his house needs tidying. When attempts are made to assess his capacity, he simply states that he has always lived in this house and he says he will be able to cope. He accepts the suggestion that he might require more help, but his niece is worried that he will, as in the past, refuse to allow carers into his home.

We shall discuss the case of Mr Rogers - who would not be unusual on a medical ward - using the legal framework that governs issues of mental capacity in England and Wales, i.e. The Mental Capacity Act 2005 (MCA). We believe that the conceptual issues raised in this paper would also be relevant in other jurisdictions. It might be thought that statute law (i.e. the MCA) provides a fairly straightforward pathway by which to proceed. A judgement needs to be made about Mr Rogers's capacity to make the required decision and, if he lacks this capacity, a decision will have to be made for him in his best interests. According to the MCA, Mr Rogers would lack capacity if he has a disorder of the mind or brain and is unable to understand, retain or weigh-up the relevant information to make the required decision and then to communicate his decision. While the MCA's framework is clear, it conceals complexities which clinicians find difficult to reconcile with the MCA's apparently straightforward format.

Assessment of residence capacity

The assessment of this particular capacity raises at least two evaluative decisions and two conceptual tensions.

Value judgement 1: the breadth of the capacity assessment

The literature is vague with regard to the best process of assessing capacity (which in some jurisdictions is called ‘competence’). Albeit any particular jurisdiction can stipulate its standards, ‘there is no single, universally accepted standard of decision-making capacity’.⁶ Thus it has been stated: ‘From both a legal and practical perspective, definitive, universally applicable, and absolute criteria to be used in determining competency simply do not exist; the physician must flexibly consider a number of variables specific to the context of the individual patient’.⁷ Instead, it is possible to describe a spectrum of standards of decisional capacity being practically employed by a variety of professionals ranging from the ability to express a choice, to agreement with the opinions of caregivers, to being capable of actually understanding the issues.⁸ Of course, ‘Individuals do not have to be able to make all types of decisions to be judged as capable of making a particular decision’,⁹ but some deficiencies will have more of an impact than others. The authoritative framework described by Grisso and Applebaum¹⁰ is widely accepted. Many accept that the common factors essential for decisional capacity include the abilities to understand, appreciate, reason, deliberate, choose and express a choice, all of which suggest the possession of values and goals.^6,11 The definition provided in England and Wales by the MCA is, in comparison, rather narrow. It is, specifically, a test of decision-making capacity in a particular context. Some authors, however, suggest that assessments of capacity should be more comprehensive in order to capture the true complexity of decision-making,¹² which also suggests that a good deal of clinical acumen is required.

A number of authors agree that ‘why?’ and ‘what would you do if?’ questions can aid in establishing the basis of the decision and the reasoning for it. However, there is some conflict between such open-ended questions and the desire to use standardized neuropsychological tests to predict decision-making capacity. Also, the MCA specifies that unwise decisions do not imply a lack of capacity. The literature in this area can become confusing as it fails to distinguish adequately between decision-making capacity, the ability to function independently and carry out activities of daily living, treatment decisions and decisions regarding residency.^7,13 A number of formal tools have been developed to measure cognitive and functional abilities relevant to decision-making, usually with respect to medical treatment.¹³ But, despite having grossly normal scores on global tests of cognitive function, such as the Mini Mental State Examination (MMSE),¹⁴ individuals in hospital may perform poorly on tests of capacity.¹³ The MMSE seems, therefore, to lack sensitivity as a screening tool for identifying patients with impaired decision-making capacity. Clearly, the MMSE on its own would be invalid, because it cannot be decision-specific. Tests of attention, verbal communication and executive function have shown some correlation with decision-making ability,⁷ but neuropsychological tests are not a substitute for assessments of specific capacities.

The first evaluative decision concerns, therefore, the breadth of the capacity assessment. If Mr Rogers is judged according to a narrow test of capacity, he will most likely fail. In part this would be because he would not comply with such a test. The MCA stipulates in section 1 that we should assume the person does have capacity rather than the reverse. Can we assume this in the case of Mr Rogers? He does give at least one reason for wishing to continue living in his home, namely that he has always lived there, but he seems to shrug off or ignore both the evidence that his house is squalid and his niece's concerns. The evaluative decision is precisely to do with the extent to which the ‘test’ of capacity can or should remain purely factual. A broader approach opens the way to values and to values diversity (see Box 1 discussed below), but this in turn complicates the process of assessing whether someone has ‘passed’ a test, which is intended to be objective.

Box 1

Principles of values-based medicine

(1)

All clinical decisions require attention to both facts and values

(2)

Values become more noticeable when they are diverse or conflicting

(3)

Progress (e.g. in law) makes values more apparent

(4)

Patients should always be heard

(5)

Awareness of values will be encouraged by careful attention to what people say

(6)

We cannot assume that the values of others are the same as our own: values are diverse

(7)

Differences are legitimate and must be taken into account

(8)

Where values conflict, the right outcome will generally come from a process which supports the legitimately held views of others

(9)

Good communication, with negotiation concerning values, is vital

(10)

Decisions should be made on the basis of partnership

Adapted from Fulford.¹⁸

Value judgement 2: the information relevant to the decision

To have decision-making capacity, the individual must be given sufficient information to reach a decision about a proposed course of action or its alternatives. Decisions about where to live require a great deal of information to be gathered in order to assess the person's capacity. The assessor must be able to present the different options and alternatives, along with the likely risks, before assessing the person's ability to understand, to retain and to weigh the options and to come to and express a choice. However, presenting such a list of information can itself seem too confrontational for the person with cognitive impairment. One consultant has commented in connection with similar concerns that it ‘… demonstrates the ethical difficulties arising from subjecting a patient under our care to an intrusive questioning process to satisfy the demands of the Act’.¹⁵ The evaluative decisions, therefore, concern how much and what information the patient ought to be able to understand, retain and weigh-up (and, therefore, how much he or she ought to be given) in order to have this particular capacity. This, in turn, is relevant to the first value judgement, because it will make all the difference, perhaps, if Mr Rogers is only expected to give a broad account, or whether we require him to give a more precise account of the information relevant to the decision.

Conceptual tension 1: weighing-up or best interests

The complex process of assessing capacity and arranging discharge may itself adversely affect the outcome of the capacity assessment: ‘diverse and, at times, conflicting interests complicate the caregiver's role during discharge-planning and may color the caregiver's assessment of capacity to decide’.¹¹ Research suggests a variety of reasons for questioning decision-making ability in day-to-day practice: lack of engagement in rehabilitation programmes, age, frailty, the environment of an acute ward, disagreement between patient and family or health providers, making risky or inadvisable decisions, the particularities of the decision, including the perception of danger, the level of cognitive or functional impairment, as well as practitioners’ bias, experience, training and values.^16,17

To the legal eye familiar with the MCA (as well as to those working in other jurisdictions) this list may seem egregious: several of its components (e.g. ‘age’, if not ‘frailty’) reflect a status approach to capacity assessment (i.e. taking some description of the person's status as grounds for withholding or bestowing capacity), which is precluded by the MCA. Furthermore, there seem to be a number of evaluative judgements contained in the list, which should, perhaps, not appear until we are judging best interests. ‘Disagreements’, for instance, would seem to be about what is best, rather than pertinent to the functional assessment of decision-making capacity. Similarly, in the MCA values are mentioned in connection with best interests, but not in connection with capacity. The first conceptual tension, therefore, is to do with the relevance of values in connection with the process of weighing things up, over against their relevance with respect to the person's best interests. And whose values will in either circumstance be given greater weight, the patient's or the care-giver's?

About Mr Rogers, do we say that he lacks capacity because he neither seems to weigh up the information about his home being squalid, nor does he appear aware of the strain he may place on others? Or can we say, on the basis of some presumed or actual values that we know him to hold, that he has weighed things up ‘in his own way’ and, therefore, that he has capacity? And to what extent do our values, as those making the judgements about capacity, come into play?

Conceptual tension 2: outcome or functional assessments

There are other pitfalls to assessing capacity in hospital in connection with decisions about going home. The boundaries between the relevant issues are blurred. It has been said, for instance, that: ‘Capacity to choose a discharge plan requires not only present function but continuing ability to address the challenges of independent living’.⁸ That is to say, the ability to make a choice about whether to live independently equates in the minds of some to the practical ability to do so, now and in the future. This notion is quite prevalent.⁷ It means that if a person is perceived to be unable to cope with independent living, the perception is that they must also be unable to make decisions about where they might live; or, at least, that if they nonetheless choose to live independently this must indicate a failure in terms of capacity. For cognitively intact individuals with physical disabilities such an assumption would be seen as unethical. But it makes the point that there remains a tendency to consider capacity in terms of outcome rather than as a matter of functional decision-making.

The assessment of capacity is generally regarded as decision-specific, suggesting that the test of capacity must also be specific for each decision. Arguably, therefore, the standard of decision-making capacity employed must always reflect, to some degree, the care-giver's perception of the risks of the decision, the abilities of the patient to comprehend options and an abstract notion of what is in the patient's best interests.⁸ The only way around this would be to stipulate that capacity should not vary according to the particular decision. This would remove the obvious need for a value-based decision, but it would instantly throw us back into a potential quagmire of competing and contested values. This is redolent of the first conceptual tension inasmuch as it highlights the difficulties there are in trying to separate capacity assessments from judgements about best interests, despite the legal presumption enshrined in the MCA that these two facets of decision-making are entirely separate. But it also shows the difficulties around the second conceptual tension. Capacity assessments under the MCA are meant to be functional: the assessment is a test of the person's decision-making with respect to a particular decision and the requirement is that the person must demonstrate that they can understand, retain and weigh up the requisite information pertinent to this particular decision (as well as communicate it). The assessments are not meant to have regard to the outcome. That is, if a person has mental capacity to make decision X, he or she must be allowed to make that decision, even if everyone else feels it is the wrong decision. And yet, for either beneficent or paternalistic reasons (or a mixture of both), clinicians find it hard to ignore the possible outcome for the individual with dementia.¹¹ We are highlighting the underlying conceptual tension, which is that the notion of a functional test, if it includes the ability to weigh-up information, must also include the background against which weighing-up occurs. This ‘background’ includes the assessor's concerns regarding the consequences (outcome) of an unwise decision.

The role of values

In our discussion of capacity assessments so far, it should already be apparent that evaluative judgements are required, despite the seemingly objective nature of the legal criteria set out in the MCA. These value judgements seem to be inherent. In recent years there has emerged an approach known as VBM, which recognizes the importance of values in every aspect of clinical practice from diagnosis to treatment.^18,19 It can be regarded as the complement to evidence-based medicine: facts are vital, but values are inescapable. Box 1 sets out 10 principles of VBM, which we have adapted for the purposes of the present paper.

We shall not discuss each principle in turn, but it should be obvious how they might be relevant to discussions about place of residency. The principles define not only a theory, to do with the pervasive nature of values, but also a practical approach involving careful listening, acknowledging diversity, with negotiation and partnership. The saliency of values becomes even more apparent when we turn to consider best interests.

Assessment of best interests with respect to place of residence

In this section we shall raise a number of difficulties to do with assessment of best interests. These reflect the need for further evaluative judgements, which are again difficult because of underlying conceptual tensions. The evaluative judgements are problematic precisely because of the possibility of competing perspectives. We shall start with the conceptual tensions.

Conceptual tensions

In England and Wales, neither the MCA nor its Code of Practice defines best interests. Indeed, ‘It is impossible to give a single description of what “best interests” are, because they depend on individual circumstances’ (para 2.13).²⁰ However, the Code gives a checklist of issues that the decision-maker must consider when making judgements about best interests (as shown in Box 2).

Box 2

A summary of the best interests checklist from the Mental Capacity Act 2005 Code of Practice²⁰

Avoid discrimination

Identify all relevant circumstances

Assess whether the person might regain capacity

Encourage participation

Do not be motivated by a desire to bring about the person's death

Find out the person's views

Consult others

Avoid restricting the person's rights

Take all of the above into account

The process outlined by the best interests checklist might well lead to a clash of perspectives, where the decision-maker will need to make evaluative decisions to take account of diverse values. For instance, the wishes and beliefs of the person prior to having dementia may not square with their perceived current wishes. A concrete example would be where someone had said to the family in the past that they would never wish to be moved into long-term care, but they now seem to have accepted, enjoyed and benefited from an extended stay on a rehabilitation ward. There might be other perspectives that differ, such as differences within a family or between a family and professional staff or within the professional team. According to one legal understanding of the situation, the decision-maker must act ‘from a logical objective attitude, examining all the aspects of the person and establishing the one logical course of action that is best for that person’ while taking a holistic approach.²¹ Whether this can ever really be achieved is debatable.

There are various models of decision-making for incapable persons involving a risk-benefit approach, adherence to advance directives, a substituted judgement approach, a proxy best-interest approach and a consensus-based approach. The ‘best interests’ model employed in England and Wales is actually a combination of several approaches.²² It contains a number of conceptual tensions already highlighted by others.^23,24

One of the most problematic aspects of making a best interests decision is how the decision-maker weighs up the information to come to a final, definitive decision. According to the MCA's Code of Practice, ‘They must not act or make a decision based on what they would want to do if they were the person who lacked capacity’ (para 5.7).²⁰ That is, they must not make a proxy decision. Nevertheless, it is easy to impose our own moral standards onto the care of the incapacitous.²¹ The decision-maker is expected to use the values and goals of the person lacking capacity to decide what they would want if they had capacity, but this requires that they must establish what those values and goals were. However, the MCA elsewhere places weight on the (proxy) opinions of others. Thus, in paragraph 5.53 of the Code of Practice it is specified that the decision-maker should try to find out two things: (a) ‘what the people consulted think is in the person's best interests in this matter'; and (b)'if they can give information on the person's wishes and feelings, beliefs and values’ (para 5.53).²⁰ The first element sounds very much like a proxy-decision, whereas the second is a substituted judgement (i.e. the judgement the person would make for herself if able). The standing of substituted judgements has been critically considered.²³ But, even if we were able to specify what a substituted judgement would be, there is no reason to suppose that proxy decisions and substituted judgements would always coincide. Put simply, ‘best interests’ just is a conceptually difficult notion.

In the MCA this is emphasized in Section 1 (4) by the statement: ‘A person is not to be treated as unable to make a decision merely because he makes an unwise decision’. To return to Mr Rogers, if his decision to return home appears unwise we cannot on this ground say that he lacks capacity. And if he has capacity, he must then be allowed to act unwisely, presumably on the grounds that he is the only competent judge of what is best for him. But this begs the question, whether it is true that only he can judge what is best? Well, while competent it is certainly true that he is the only one who can decide what is best, but it does not follow that he is the only one who knows what is best for him. Where there is no doubt that the person has capacity, this should cause no problems: the law is clear. But where there is a doubt about capacity there will be a tension if others feel they know that the person's decision is not for the best. For it will always then be open to them to argue that Mr Rogers, for example, is not weighing things up adequately and, therefore, that he lacks capacity. The line between this and arrant paternalism is thin. Yet it is a reality that the distinction between being unwise and not weighing information up adequately - the first of which is compatible with having capacity and the second of which is not - is indeed seen in practice.²⁵

We shall now consider the perception of risk and then the family perspective before returning to consider further manifestations of conceptual tensions.

The perception of risk

Decisions about whether people with dementia can return home are embedded in the discharge planning process. Risk often drives decision-making during discharge planning,²⁶ but there is no definition of ‘unacceptable risk’ and tolerance of risk varies between patients and healthcare workers.²⁷ Professional care-givers can, because of the perceived need to be beneficent, put physical safety above all other considerations.¹¹ Hence, plans are developed with the worst scenario in mind, irrespective of how likely that scenario might be. Families might also focus on safety without respect for the patient's autonomy. Some risks, such as the risk that Mr Rogers would ‘wander’ again if he were to acquire a further infection, are simply unpredictable, but may weigh heavily in the minds of those involved. It is unclear as to what consideration professional care-givers and families give to the negative consequences and risks of institutionalization -'inadequate supervision, lack of quality facilities, learned helplessness, unsympathetic staff, few outlets for emotion and feeling’,¹¹ as well as loss of independence - which may in fact outweigh the risks of living at home. Numerous other factors have been identified as influencing decisions about discharge and institutionalization, including medical factors, length of hospital stay, mobility, social surroundings, personality, habits, social support, carer characteristics, behavioural disturbance and external factors such as lack or resources.^26,28

Zuckerman¹¹ proposed a ‘risk-preference calculus’, which could be applied to decisions about the best interests of individuals. When the spoken choice of the person who lacks capacity appears to conflict with the individual's personal values, care-givers and family should feel less obligated to follow the expressed preference. If the risk to the person lacking capacity or to others increases and becomes more certain, the obligation to follow the spoken choice reduces. Zuckerman recognized the inevitable subjectivity of this approach, but suggested it provides some framework for weighing up the different options while holding in mind the spoken choice of the individual. For others, however, the focus is fixed on the protection of incapable adults from their decisions: ‘an incapable person must be assisted and protected from the negative consequences of making an “incapable” decision’.²⁷

McDonald²⁵ examined the decision-making in 14 social work cases, 12 of which concerned admission to residential care. She highlighted three types of decision-making. The first was a legalistic type of decision-making, where the law was regarded in a positivistic light and ‘practice was highly procedural; adverse outcomes were given no greater weight than positive outcomes …’.²⁵ The second, actuarial approach, used expert knowledge to calculate probable outcomes, which allowed social workers to encourage particular decisions given the likely outcome. The third approach emphasized the rights of the person with dementia and encouraged advocacy on their behalf. The possibility of a plurality of approaches under one system of law is interesting in itself and suggests the importance of evaluative judgements when laws are put into practice (and hence the relevance of VBM). In addition, however, we have to recognize that the views of professionals regarding risk and how to respond to it may not square with the views of older people themselves.²⁹ So within one legal framework there is considerable room for negotiation around the values and viewpoints that should hold sway.

The Nuffield Council's report, Dementia: Ethical Issues, took a more balanced approach and said this about risk:

Taking risks is an inherent part of our everyday lives, and a life without any form of risk is unimaginable. Those caring for people with dementia however, may often feel the need to do all they can to reduce risk to an absolute minimum. Unfortunately, minimising risk often means forgoing benefits and restricting freedom, which in turn may be highly detrimental both to the person's sense of autonomy and to their overall well-being (para 44).³⁰

On this basis the report advocated that risks should not be viewed in isolation,

… but in the context of a risk-benefit assessment. Such risk-benefit assessments should explicitly take into account the well-being and autonomy of the person with dementia, as well as their need for protection from physical harm and the needs and Interests of others (para 45).³⁰

Hence, more weight should be given to the views of Mr Rogers than might otherwise be the case if the focus were mainly on risks as opposed to benefits. This approach is not incompatible with the MCA, but it does stress the need for value judgements to be made both about the risks and the benefits of the alternatives facing Mr Rogers.

Family perceptions

Establishing the person's previous wishes, values and goals inevitably requires considerable input from those close to the person who lacks capacity. When determining best interests there is now a statutory requirement under the MCA that decision-makers must, where practicable and appropriate, consult with named consultees, proxies and ‘any person caring for or interested in the person's welfare’, which would include family members and friends (section 4(7)). At least one commentator has suggested, with regard to family, that ‘it is often hard to distinguish between what constitutes influence and welcome involvement and what constitutes coercion’.¹¹

There can be disagreement with family members and friends, whose motivations might occasionally not be completely benign, who might nonetheless be essential to implementing any plan once the person is discharged. In practical terms ‘discharge planning often involves the reconciliation of the patient's and family's preferences’.⁸ However, the valuable role families normally can and have to play must not be overlooked. The Nuffield Council on Bioethics recommend that ‘joint decision making is encouraged wherever appropriate’ (para 5.23),³⁰ which would be in keeping with the principles of VBM (Box 1). They argue that most people, irrespective of capacity, do not make decisions in isolation but do so with support from those close to them and in the light of these relationships. In their opinion: ‘joint decision making with trusted family or friends is one example of how [a] broader approach to autonomy can be realised in practice …’ (para 5.23),³⁰ especially when capacity is uncertain.

In the case of Mr Rogers there is some family disagreement, which will have to be negotiated in a way that involves Mr Rogers as far as possible.³¹ Again, conceptual tensions underlie the different determinations of what might be best and, in line with the principles of VBM, the tensions must be acknowledged and negotiated.

Autonomy, best interests and trust

At the heart of the debate about best interests is a question about how much importance we should give to autonomy (i.e. Mr Rogers’ inclination to live his life as he chooses) over our desire to act in a beneficent manner. Many struggle with how to balance concerns about safety and wellbeing with the individual's wishes when the two are in conflict.^26,32–35 A process to balance autonomy against other ethically relevant factors such as safety and carer burden has been proposed.³⁶

Health-care workers often see it as their duty to be beneficent and one interpretation of this is that there is a duty to protect an incapable person ‘from the harmful consequences of his incapable decisions’.²⁷ Others equate beneficence and risk management with paternalism and argue that incapacity can only rarely justify an infringement of basic human rights.³⁷ So, for instance, it can be argued that autonomy is, in itself, a good, irrespective of whether it promotes welfare: ‘Patients who wish to go home must go home, regardless of whether or not healthcare professionals view this as the best or safest choice’.³⁸ Others have similarly argued that autonomy should generally be given precedence.³⁹ This approach does not necessarily capture the complexity of decisions regarding residence. But it does suggest the point of view, held by many, that quality of life should be determinative as far as what is best goes. Institutionalization does not necessarily promote physical safety and often has a deleterious effect on quality of life.¹¹

When management of risk is an important aspect of discharge planning, some have suggested that attention should be turned from autonomy to trust.¹⁶ ‘Trust involves an active decision to delegate or share responsibility for one's own welfare to somebody else in situations of uncertainty or risk’ and requires an environment that promotes trust within relationships.¹⁶ Trust is complex; it involves interactions between professionals, between professionals and patients and between patients and their social networks. But at its root, in the context of someone such as Mr Rogers, trust is also about the background fiduciary relationship that is often taken to exist between professional care-givers and those being cared for. Whether this amounts to a form of paternalism or, in the context of dependent people with dementia, to the sort of ‘parentalism’ described by Agich needs to be decided: ‘Parentalism signals the essential interconnectedness of all human persons and is rooted in the basic response to the needy other that such relationships engender’.⁴⁰ Both trust and relationships seem key to the proper balancing of autonomy and best interests.

Discussion

The case of Mr Rogers provides a route to a number of issues that emerge in the literature to do with decisions about residence capacity in connection with people with dementia being discharged from hospital. We have highlighted a number of value judgements, different perspectives and conceptual tensions. There are likely to be more and they interlink. Value judgements concern the breadth of capacity assessments, the extent of the information relevant to making a decision, the perception of risk and how to balance the differing views of all those concerned. The conceptual tensions are around the role that values play in assessments of capacity over against judgements about best interests, the distinction between functional- and outcome-based assessments of capacity, the nature of best interests, where merely ‘being unwise’ ends and lack of capacity begins, as well as the relationship between autonomy and best interests.

The striking thing about decisions concerning place of residence is that they are both ubiquitous and, as we have demonstrated, highly complex. Many treatment decisions, for instance, will involve simpler information; and judgements about what might be best, if the person lacks capacity, will often seem more straightforward. Of course, some treatment decisions will be complex, but even then they may often mainly require an understanding of the facts. The distinctive thing about capacity decisions about place of residence is that they throw up a variety of values, which may be diverse and can quite easily be conflicting. This is against a backdrop of real concerns that a wrong decision might lead to a deprivation of liberty on the one hand or exposure to risk of injury on the other.⁴¹ When considering place of residence, ‘decision-making is multi-faceted, involving intertwined medical, social and ethical considerations’.³⁹

There is a further potential distinction between these decisions and many treatment decisions, which is that the place of residence of a person with dementia is almost invariably of huge importance to those around. The outcome of a best interest decision might rest on the cooperation of family members, which cannot be assumed: ‘Families cannot unknowingly be enlisted in a discharge plan’.⁸ The burden of caring for an elderly person with dementia is considerable and the needs of carers may be in conflict with those of the person lacking capacity. The decision about where a person lives can also have safety implications as the individual might put others at risk inadvertently.

The way forward

Given that values underpin the complexity of these decisions, a possible way forward is to emphasize the practice of VBM (Box 1).^18,19 The key features of relevance here are that VBM should alert us to potential differences caused by the diverse values of all concerned. Having recognized divergent values, while putting Mr Rogers centre-stage, a complex negotiation requiring highly developed communication skills is required. The relevance of good relationships and trust becomes immediately apparent. But so, too, do a host of professional virtues: compassion, honesty, integrity, practical wisdom and so on.

There may be steps that can be taken to try to safeguard the interests of all concerned. These could involve more open involvement as part of good communication; better explanations of the law; better patient advocacy; formal assessments of capacity and best interests; and more trials of home discharge.⁴² Decisions about place of residence cannot be made quickly in the midst of busy acute medical wards. They need careful thought, requiring time and mental (if not physical) space. Separate rehabilitation wards, for instance, may offer a solution.

It may be that there are amendments or additions to be made (in time) to the MCA or to its Code.^23,30 But there is also a need for better education about the MCA. If capacity assessments can be seen as functional rather than as outcome based, it may be that the assessment of capacity would seem more straightforward. Tests of capacity should be applied more strictly, perhaps, bearing in mind that the importance of residency decisions requires that there should be a high level of decision-making capacity; but judgements of best interests should be made more broadly using principles derived from VBM.¹⁸ In other words, narrow application of the capacity test is followed by a broad-based assessment of what might be best.

This suggestion may seem paradoxical, given that we have highlighted how, at a conceptual level, there are evaluative judgements at play in the notion of capacity itself, especially with respect to the criterion of weighing up. Practically speaking, however, the law requires a dichotomous answer about capacity: it is either present or not. In reality, because of the conceptual tensions, this is not the case. But the MCA is predicated on its being so. And our suggestion is that there is a way to compensate for these uncertainties when it comes to best interests. Functional tests of capacity encourage dichotomous decisions, whereas estimations of ‘best interests’ are inherently defeasible. So a tighter test of capacity followed by a broader judgement of best interests makes some prudential sense, but only if the broader judgements are truly broad as the checklist in Box 2 suggests they should be and in line with the principles of VBM as set out in Box 1.

Conclusion

At the centre of any decisions about place of residence for someone with dementia must be the person him or herself. Judgements about best interests will be difficult. But, first, there needs, quite generally, to be more recognition of the importance of value judgements in determining both capacity and best interests.⁴³ This remains true even if we are going to apply our tests of capacity in as strict a functional manner as possible: we need to mark where our dichotomous determination of capacity is based on value judgements, which may then need to come into play more potently in the subsequent judgement about best interests. Second, the difficulties just are a reflection of the standing of Mr Rogers as a person with dementia who still values some things.⁴⁴ And meanwhile he is situated in a multitude of personal, familial, social, legal, cultural and ethical fields.⁴⁵ So the complexity is inherent and inevitable. Moreover, it reflects the importance of these decisions from the perspective of basic civil rights.

In this paper we have sought to shed light on the nature of the complexity in connection with these particular decisions about capacity and best interests, we have gestured at ways of dealing with the complexity and we have highlighted important considerations in dealing with the difficult decisions about whether or not a person with dementia should move into long-term care.

Footnotes

Acknowledgements

The larger project of which this paper forms a part was commissioned by the National Institute for Health Research (UK) under its Research for Patient Benefit programme (PB-PG-0906-11122). The views expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. We are grateful for this support. We are also grateful to Professor Louise Robinson and Dr Richard Frearson with whom we have discussed some of the issues raised in this paper. Administrative support has been kindly provided by Angela Mattison.

Conflicts of interest: None.

Helen Greener is a consultant in old age psychiatry and consultant psychiatrist in gender dysphoria.

Marie Poole is a social science researcher at the Institute of Health and Society, Newcastle University. Her areas of interest include understanding and improving health-care services for people with dementia and their families.

Charlotte Emmett is a senior law lecturer at the School of Law, Northumbria University. She is a member of the School's Centre for Mental Health Law and specializes in the laws relating to mental incapacity and consent to treatment, torts and civil litigation. Previously she was a practising solicitor and the founding editor of the Journal of Mental Health Law.

John Bond is a social scientist (gerontologist) with a specific interest in the social aspects of cognitive ageing and dementia. He is the senior editor of the introductory text Ageing in Society published by Sage.

Stephen J Louw is a consultant physician and geriatrician at the Newcastle upon Tyne Hospitals NHS Foundation Trust. He is the chair of his trust's clinical ethics advisory group and former Chair of the UK Clinical Ethics Network.

Julian C Hughes is a consultant in old age psychiatry and an honorary professor of philosophy of ageing in the Institute for Ageing and Health, Newcastle University. His academic interests are in the fields of philosophy and ethics in connection with dementia and ageing. His most recent book is Thinking Through Dementia, published by OUP.

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