Basket | Login

 
 
 
 

About legal capacity and decision-making capacity

2020 Ethical issues linked to legal capacity and decision making (full report)

Rights and abilities 

So far, we have been looking at issues related to autonomy, independence and decision-making capacity. We now turn to the issue of legal capacity and its relevance to decision making by and for people with dementia. ‘Legal capacity’ is the term used to refer to therightto make decisions for oneself, within the constraints of the law, which must then be recognised as being legal and hence respected (Devi 2013). Having legal capacity means having the right to make choices about everyday matters such as buying clothes, going on holiday, whether or not to smoke or drink alcohol and having certain hobbies and friends. It also means having the right to make choices about things with more serious consequences such as getting married, buying a house, moving into a care home or having a risky operation.

People don’t always have the opportunity to exercise their legal capacity (or their ‘legal capacity to act’). A common reason for this is that they are not considered as having theabilityto make a decision, which is known as lack of decision-making capacity. The functional approach to legal capacity (see below) argues that the level of a person’s decision-making capacity determines whether they are considered as having legal capacity. The CRPD (see next subsection), on the other hand, argues that people should not need to have decision-making capacity to be considered as having legal capacity. This is a significant difference of opinion with considerable implications for the rights and wellbeing of people with dementia. We will come back to this debate at several points in this report.  The fact that both concepts share the word ‘capacity’, and that sometimes ‘capacity’ is used on its own, can sometimes lead to confusion. 

There are several different approaches to conceptualising legal capacity insofar as it relates to conditions for its withdrawal and often, this is linked in some way to the ability to do things and/or make decisions.

  • The ‘status approach’ equates a medical condition or impairment with decision-making capacity and considers this sufficient grounds to revoke legal capacity, regardless of a person’s actual capacities. It reflects the medical model of disability and makes assumptions based on stereotypes. Scholten et al. (in press) argue that the status approach discriminates against people with dementia.
  • The ‘outcome approach’ focuses on the reasonableness of decisions that are made, whereby a decision that others consider unreasonable (a refusal of treatment considered by others as being essential would be a typical example) and might lead to the person’s capacity being revoked. It suggests that there are ‘right’ and ‘wrong’ decisions and denies people the right to individuality and to live their lives according to cultural, social, philosophical, political and religious beliefs and values which differ from those of the majority population. It denies people the right to make mistakes and take risks. Scholten et al. (in press) argue that the version of the outcome approach most likely to be used in liberal democracies discriminates against people with dementia.
  • The ‘functional approach’ makes legal capacity dependent on actual decision-making capacity. This approach means that a person needs to demonstrate that they can make an informed decision on their own. This would include, for example, being able to understand the nature and potential consequences of a particular decision. Gurbai argues that if mental capacity assessments were to be justifiably used to determine legal capacity, they would have to be applied to people with and without disabilities and that this does not happen, which is why it is discriminatory (Craigie et al. 2019). Scholten et al. (in press) argue that, if employed correctly and when combined with supported decision-making, the  functional approach does not discriminate against persons with dementia.
  • The ‘sliding scale approach’, which is one version of the functional approach, provides a system of legal protection whereby a person is permitted to make certain decisions, either alone or with support, whereas others have to be made by a legally appointed representative. Some decisions are considered as requiring higher levels of ability than others (e.g. decisions with life or death consequences versus decisions with more trivial potential consequences). The threshold for functional decision-making capacity is linked to the level of risk associated with a particular decision.

All approaches still make it possible for a person to lose legal capacity and for decision-making power to be handed over to other people. Nilsson (2012) suggests that an analysis of a person’s decision-making capacity (like in the functional approach) should only be used to determine the level and type of support needed and not as a yardstick by which to withdraw legal capacity. Scholten and Gather (2018), on the other hand, contend that an assessment of decision-making capacity should serve not only to determine the level and type of support needed but also to determine whether the support provided suffices to enable people to make their own decisions 

The European Union Agency for Fundamental Rights (FRA 2013) distinguishes between formal and informal restrictions of legal capacity. Formal and informal restrictions of legal capacity result in the loss of the right to make decisions recognised by law. Unlike the former, informal restrictions are not based on a legal or even administrative process but on assumptions, paternalistic attitudes, ignorance and institutional procedures. Whatever the nature of the restriction, any loss of the right to make decisions can have a considerable impact on people’s lives and wellbeing. Being formally and publicly declared as having no or limited legal capacity[1] may have a devastating psychological, emotional and practical impact, affecting self-esteem, constituting an affront to a person’s dignity and affecting their personal relationships with other people and their standing in the community. It has been suggested that depriving a person of their legal capacity amounts to considering them as a non-person. Legal capacity is therefore not just a legal matter. Legal capacity and decision-making capacity are interrelated and have social and ethical implications.

Legal capacity in the context of the Convention on the Rights of Persons with Disabilities

Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) states that everyone, irrespective of disability, has the right to be considered as a person before the law in all aspects of life, that their decisions must be legally recognised and that appropriate measures must be taken to provide them with access to the support that they may need to exercise their legal capacity.

General comment No. 1 (2014), published by the Committee on the Rights of Persons with Disabilities in connection with the CRPD, affirms that all people with disabilities have full legal capacity and that:

 “the right to equal recognition before the law implies that legal capacity is a universal attribute inherent in all persons by virtue of their humanity and must be upheld for persons with disabilities on an equal basis with others” and

“Article 12 of the Convention on the Rights of Persons with Disabilities, however, makes it clear that “unsoundness of mind” and other discriminatory labels are not legitimate reasons for the denial of legal capacity (both legal standing and legal agency)” (Committee of the CRPD, 2014, p.3).

The Committee further claims that the denial of legal capacity to people with disabilities has led to many being deprived of certain fundamental rights. Kanter (in Craigie et al. 2019) goes one step further and argues that the right to support (in relation to the new right of universal legal capacity) has become a new human right. Whilst legal capacity is described as a universal human attribute (perhaps along the same lines as dignity), this does not mean that it cannot be taken away. Even within the CRPD and the General Comment of the Committee of the CRPD, it is stated that this can happen (e.g. in case of bankruptcy or criminal conviction) but must be applicable to everyone and not based on personal traits such as “gender, race, or disability, or have the purpose or effect of treating the person differently”.

The CRPD does not actually define legal capacity and this may have serious consequences for the very people whose legal capacity the CRPD and associated measures are intended to promote and protect. Furthermore, it has raised some controversy about whether it should be interpreted as meaning that everyone can be supported to make their own decisions (which many would argue is simply not feasible) and that substitute decision making should never occur.

In the Handbook for Parliamentarians on the CRPD[2], there seems to be an indication of the need to have the capacity to understand information, appreciate consequences, act voluntarily and communicate a decision independently. It is stated that such criteria for legal capacity do not need to be proven if a person simply demonstrates trust in a designated supporter. Therefore, whilst everyone is assumed to have legal capacity, the exercise of legal capacity still seems to be dependent on decision-making capacity. People who with all possible support cannot make a decision can use the supporter as a substitute, not as a substitute decision maker (i.e. typically defined as a person who takes a decision on someone else’s behalf)  but as a substitute possessor of decision making capacity, by demonstrating trust. The supporter would effectively then take a decision on that person’s behalf (classed as ‘total support’). This would not be considered as substitute decision making but as the person exercising legal capacity by arranging for someone to act on their behalf. It is unclear to what extent and on the basis of which criteria a demonstration of ‘trust’ in a supporter would be considered sufficient for such a decision (which would then be considered as constituting the exercise of legal capacity of the supported person). Assumptions about trust could leave people open to abuse.

The CRPD implies that people may not only require support to exercise their legal capacity but that such support might need to be total. Article 28 of General Comment No. 1 (Committee of the CRPN 2014) clearly states:

“The development of supported decision-making systems in parallel with the maintenance of substitute decision-making regimes is not sufficient to comply with article 12 of the Convention.”

In accepting the possible need for 100%/total support whilst at the same time stating that any kind of substitute decision making is unacceptable, the CRPD makes it clear that support, irrespective of the level needed, does not constitute substitute decision making. However, the suggestion that some people may need total support seems to contradict the assumption that everyone with sufficient support can make their own decisions. 

Some ardent defenders of a rigid interpretation of article 12 of the CRPD argue that there may be extreme cases where a tiny percentage of decisions needs to be made and where a supporter would not be in any position to determine what the person would have wanted, but that a model of legal capacity should not be based entirely on such cases.[3] Rather, it should be sufficiently flexible to accommodate them (Flynn and Arstein-Kerslake 2014). They do not, however, call for every wish and preference to be respected in case of danger, and condone over-riding wishes (in the context of the duty of care) but insist that this still amounts to respecting a person’s will and preference.[4] 

According to Scholten and Gather (2018), article 12 does seem to call for an absolute ban on denying legal capacity and for all regimes of substitute decision making to be abolished and replaced by supported decision making.  They elaborate several adverse consequences linked to the pursuit of these goals for people with mental disabilities:

  • Insisting that people know what is best for them and are therefore best placed to make decisions overlooks cases where people (e.g. with seriously impaired decision-making capacity) do not necessarily know what is best for them (i.e. in keeping with their own values and priorities) and/or which decision will result in what they feel is best for them.
  • Supported decision making emphasises the provision of support but there is little recognition of the risk of supporters being biased and either deliberately or unconsciously projecting their own interests onto the person whom they are supporting. It may be difficult for third parties to challenge decisions made because the supported person retains legal capacity and has therefore made the decision themselves. Teasing out possible undue influence is likely to be more difficult than challenging a decision made on someone else’s behalf.
  • Linked to the above, the person who makes the decision is entirely responsible for any consequences resulting from the decision made. Supporters may have considerably influenced that decision but it would be difficult to trace the exact nature, extent and possible underlying motives of such support, and to hold them accountable for the decision. Collective responsibility is hard to determine.
  • Support for decision making requires time, money and effort so it is important to decide on conditions for its provision. It is stated in the CRPD that support to exercise legal capacity should not be based on mental capacity assessments but on non-discriminatory indicators. Scholten and Gather question what these might be other than decision-making capacity.
  • Advance care planning is inextricably linked to the notion of decision-making capacity. Advance directives, for example, come into force when a person is declared as lacking decision making capacity and hence no longer being considered as having legal capacity.

Current legislation in the light of the CRPD

Although the CRPD, as mentioned earlier, has been ratified by all member states of the European Union, some measures of legal protection currently involve and are dependent on the restriction or withdrawal of a person’s legal capacity, resulting in people no longer being allowed to make certain decisions about their lives. Nilsson (2012) suggests that the bulk of European legal capacity systems is outdated and that there is a need for law reform based on the assumption that everybody enjoys legal capacity, with a move away from a focus on deficiencies. Many people in Europe continue to be deprived of their legal capacity and placed under measures of plenary or partial guardianship (Nilsson 2012). Some laws still reflect a paternalistic approach reflecting a perception of the need to protect individuals and society from harm, which may partly reflect stereotypes about people with mental health conditions being dangerous and violent (Pathare and Shields 2012). Certain conditions, such as schizophrenia, tend to be more associated with danger to others through violence (Reavley, Jorm and Morgan 2016)[5], whereas others, such as dementia, tend to be more associated with unintentional harm to self and others (Crisp 2004, Werner 2005). A common response to each has been to limit people’s legal capacity and to restrict various freedoms.

With regard to the imprecise and sometimes misleading use of language in the CRPD and in relation to legal and decision-making capacity in general, Gardner states,

“Indeterminacies of language and intention on the part of lawmakers, moreover, can afflict law in such a way as to frustrate its role as a filler of moral gaps”  (2010, p.423).

The CRPD is not a law but its provisions are legally binding for the countries which have ratified it. It therefore has great potential but the ambiguity of terminology and concepts in it may impact on its ability to improve the lives and wellbeing of the very people it targets. Such ambiguity was reportedly intentional, serving as a means to achieve consensus, but it may be detrimental to people with disabilities in that it allows for diametrically opposed interpretations (Pearl 2013).

The way that article 12 of the CRPD is interpreted will, according to Pathare and Shields (2012), determine future practices and legislation. They describe the key problem as not being in understanding the ideals of article 12 but in truly shifting from substitute decision-making to a more supportive mode. Difficulties of implementation have also been linked to a risk of the provisions in article 12 being reduced to mere rhetoric (Pearl 2013) and to substitute decision making under a new name (Nilsson 2012). However, different patient and interest groups campaigning for law reform are also driven by different interpretations of article 12 of the CRPD and different interests and values of the groups they represent. The World Network of Users and Survivors of Psychiatry, for example, have a strict interpretation based on a complete refusal of substitute decision making. Some disability organisations interpret it as permitting guardianship measures subject to certain safeguards as a last resort (Pearl 2013), which is the approach supported by the authors of this report.

The model implicitly proposed in article 12 of the CRPD is based on the need to assess what kind and level of support is needed rather than whether a person has decision-making capacity and should have a substitute decision maker appointed (Devi 2013). Whilst governments in Europe are obliged to bring their legislation into line with the CRPD and to replace substitute decision making, based on the principle of best interests, with the more inclusive supported decision-making approach, there remains a considerable disconnect between the CRPD and national legislation.

The recent Assisted Decision-Making (Capacity) Act 2015 of the Republic of Ireland, for example, has a clear structured approach to ‘assisted decision-making’ which includes the appointment of a decision-making assistant and/or co-decision maker, as well as provisions for advance healthcare directives. It does not abolish guardianship as it allows for a decision-making representative to make one or more decisions on a person’s behalf. However, a co-decision maker must be

“a relative or friend of the appointer who has had such personal contact with the appointer over such period of time that a relationship of trust exists between them” (Part 4, 17, 2a).

This means that people who live alone or do not have a relative or friend fitting this criterion would be more likely to be deprived of their legal capacity. Nevertheless, this act, which replaced the Lunacy Act of 1871 and abolished the use of terms such as ‘lunatic’ and ‘idiot’, has been hailed as marking a historic point in the fight for equality.[6] 

Irrespective of how article 12 of the CRPD is interpreted, it could be argued that the CRPD has been useful in reinforcing the gradual transition away from approaches based solely on best interests and substitute decision making to others based on shared and, more specifically, supported decision making, both of which are inclusive approaches to decision making. This is reflected in recent changes in legislation related to legal capacity, in favour of approaches which require the involvement of people lacking decision-making capacity in the decision-making process and/or provide the necessary support to enable them to make a decision.

Different approaches to support and empowerment

Since the start of the disability movement and particularly in the last two decades, there has been an increasing trend towards encouraging and supporting people with various medical conditions and/or disabilities to make decisions for themselves rather than others deciding on their behalf. This move away from the concept of substitute decision making and of acting in other people’s ‘best interests’ has been perceived as a challenge to the deeply entrenched paternalism. This has been particularly noticeable in the context of guardianship measures, as well as in the context of healthcare and involvement in research, where the concepts of shared and supported decision making are increasingly common. Indeed, it is now widely accepted that there is a moral imperative to involve people who lack decision-making capacity in decision making concerning their lives. It reflects respect for human rights and may help reduce unnecessary treatment and improve outcomes. There is evidence to suggest that people with dementia do not receive the same level of treatment as people without dementia, even when they have a higher clinical need[7], suggesting structural discrimination and the need for possible support to ensure respect for their rights.

Shared decision making

Shared decision making recognises the validity of the experience, views and preferences of the person directly concerned by a particular decision (in this case the person with dementia) but also that people live and move within networks of relations, and challenges paternalistic attitudes and practices. The concept of shared decision is in keeping with the concept of relational autonomy. Gómez-Virseda et al. (2019) suggest that the influence of other people in the decision-making process enhances rather than impedes autonomy, and should therefore be actively promoted. They point out that relatives and health care professionals can promote decision-making capacity by presenting different options, providing emotional support, removing social barriers and bridging gaps between the person making the decision and the social environment.

Shared decision making should be seen as health and social care professionals and patients each laying all their cards on the table and then working together to reach consensus on the preferred treatment plan (Peisah et al. 2013). Peisah and colleagues emphasise the role of assent in shared decision making (e.g. in cases where people are unwilling or unable to play a more active role in the decision making process). The exercise of power and influence (presumably on the part of the health and social care professionals) is perceived in terms of best serving patients’ needs. Some see it as a means to redress the imbalance created by transferral of the locus of authority from doctors to patients, which resulted from legitimate societal demands to promote patients’ rights but which some consider unhelpful (Truog 2012). Truog (2012) further emphasises that doctors are experts in facts and that such knowledge cannot hold sway over questions of values and preferences, hence the need for a collaborative approach between doctors and patients.

“This division of labour reflects a recognition of the naturalistic fallacy, the erroneous notion that one can derive ethical conclusions from scientific facts; in truth, an “ought” cannot be deduced from an “is” (2012, p. 581) .

A collaborative approach to decision-making extends beyond mere assent (whereby patients come to identify with a decision and make it their own) to one which gives greater room for patients to determine different levels of participation and to engage in a more equal exchange in which they provide information about their values, goals and non-medical factors which make life meaningful to them and contribute towards their identity. The collaborative approach is broader, involving a wider range of people, not only health and social care professionals but also supporters, assistants and relatives etc. in the context of a care plan rather than isolated decisions. It is not clear, however, how this is coordinated.

Any influence should not take the form of pressure and influence should not be ‘undue’ (i.e. to a level that is more than is necessary, acceptable or reasonable). On the other hand, an over-emphasis on avoiding undue influence and the exercise of power by doctors may lead to a kind of mandatory autonomy, lack of advice and lack of adequate support for people making difficult medical decisions (Peisah et al. 2013). This would involve doctors limiting themselves to the provision of facts and different options but withholding their own experience and recommendations.[8]

Shared decision making is a means to promote autonomy, especially within the context of real-life situations of interdependency (Peisah et al. 2013). It is a more positive approach to autonomy, which is much more than simply having a right to self-governance or a right to be left alone (Agich 2003). Widdershoven and Abma describe autonomy, in keeping with a care ethics approach, not as self-determination without the interference of others, but as “the ability to direct and shape one’s own life based on and in relationships with others” (2011, p.27).

For many people with dementia, participating or sharing in the decision-making process is as important as, if not more important than, making the actual decision (Daly, Bunn and Goodman 2018). However, there are a few potential barriers to effective shared decision making such as not feeling sufficiently informed or supported, fears about the ability to engage in shared decision making or of being considered a difficult patient, the impact of cultural factors linked to help-seeking on willingness to share decision making and having no family or friends to involve (Pathare and Shields 2012). Moreover, some people may have relatives but not necessarily wish to involve them.  In some cases, relatives might take advantage of people with dementia under the guise of supporting them.

Supported decision making

Recognition of legal capacity in different domains (e.g. consent to treatment or moving into residential care) has long been dependent on an evaluation of decision-making capacity and other capacities, such as the capacity to live independently etc. Such evaluations have typically sought to ascertain whether a person is able to provide informed consent (i.e. whether a person is able to understand relevant information, apply it to their own life, decide freely/voluntarily and communicate their decision by whatever means available or possible for him/her). This could include, for example, whether a treatment would be risky, what the possible alternatives might be, what kind of side effects there might be and how it might affect the person’s prognosis and everyday life.

The concept of supported decision making is about providing the necessary support for someone to make a decision whereby that person retains their legal capacity, even though they would not have been considered capable of deciding in the absence of that support. The person or people providing the support are not necessarily relatives but could be anyone whom the person trusts. This support might, for example, involve providing information, explaining issues, describing different possible consequences of various options or helping the person to communicate the decision.

Various decision aids have been developed to facilitate the process of shared and supported decision making. One Scotland (Scottish Government), for example, has produced guidelines on supported decision making for people with dementia. This covers the provision of relevant information, facilitating communication, various aids (including documents, websites, DVDs and devices), choosing the best time and place and involving other people. The National Institute for Health and Care Excellence (NICE) has a range of decision aids including one on antipsychotic medicines for treating agitation, aggression and distress in people living with dementia, which is described as consisting of “information to help people living with dementia, their family members and carers and their healthcare professionals discuss the options”.  This contains a non-technical summary of the different options, what NICE recommends, how people are likely to benefit, possible side-effects, other things to think about and visual representations of the risk of stroke and death[9]

Support might also include the supporter actually communicating the decision but in such cases, the supported person would still be considered as having legal capacity. The important point is that the supporter or supporters must advise and act according to the person’s will and preferences, in keeping with the person’s identity and respecting the right to take certain risks and to make decisions that other people might consider wrong.

As mentioned earlier, some people interpret the CRPD as implying that if supported, all or virtually all people can make their own decisions (i.e. have decision-making capacity) and that supported decision making can replace substitute decision making (Parker 2016). Supported decision making is thus presented as the practical means and justification to claim that everyone has legal capacity. However, it remains unclear what ‘decision-making capacity’ means, whether it is essential to have it (because all people have legal capacity according to the CRPD) and if it isn’t, what the justification is for providing necessary support. Clarification would also be needed on where the law stands in this case on issues such as consent to treatment, the legality of testaments and people’s right to decide to continue living at home regardless of any danger they may pose to themselves or others.

If supported decision making is not linked to an evaluation of the capacity to make a decision (i.e. under the CRPD), it is unclear at what point or how much support should be provided, but also how decision making is conceptualised. As decisions always involve at least two options, is it sufficient to indicate which one it will be or is some level of understanding nevertheless necessary of the difference between and implications of each option? There must be some level of understanding as opposed to arbitrarily selecting option A or option B. If so, then as Parker (2016) suggests, decision making  must involve the fundamental ability to make choices or as Smith and Sullivan (2012, p.33) describe it “the ability to evaluate options and recall having made a choice”.

Ethical persuasion and influence in the context of shared or supported decision making

Appropriate persuasion and influence may be ethically justifiable in the context of shared and supported decision making. When healthcare professionals decide which information to give patients and how to explain or frame key options, they are inevitably also influencing the decisions that patients and their families make. Dubov (2015) suggests that they should assume responsibility for this and use it constructively to help their patients to reach a solution that from a medical perspective makes most sense and from a personal perspective corresponds to patients’ values and long-term goals. Doctors are often best placed to know what the options are and which ones would be best for their patients, provided that they know their patients well and understand their values.

Doctors need to find out about their patients’ values so as to be able to match those values with the medical facts relevant to each patient’s situation. They also need to be able to recognise, validate and respond appropriately to people’s emotions. Emotions are considered as being connected to beliefs in the sense that people fear something (e.g. grizzly bears, taking exams or losing their jobs) because of associated beliefs (e.g. being killed, being labelled a failure or ending up homeless). Often, emotions are directed at people because of reasons or beliefs (e.g. feeling anger towards someone or disappointment with someone), although the cognitive aspect of emotions may be conscious or unconscious (Dubov 2015). They are not just bodily reactions.  People with dementia, who have difficulties with abstract thought, may sometimes have limited awareness of the possible reasons for their emotions or be able to explain them. The emotions may nevertheless be a way for doctors to reach out and try to understand what is important to them, and to use this to provide decision-making support.

When done in the right manner (i.e. as a collaborative/shared exercise with patients and their families), Dubov claims that the careful choice and framing of the information provided and taking into consideration people’s emotions would not constitute paternalism, manipulation, coercion or deception, and can be a positive tool in medical communication. In the context of possible restraint or involuntary placement (see section 3), the issue is more complex because there is a pending threat of coercive measures being applied if the ‘right’ decision is not made. 

Total support and substitute decision making – how to decide

In addition to the obvious example of a person who is in a coma, many people with extremely advanced dementia (who often have difficulties with verbal communication) or in a state of delirium lack decision-making capacity for many decisions. Scott Kim describes the justification for substitute decision making as follows:

“The best reason (and the only reason) why we sometimes need to make decisions for others – why we cannot jettison the concept of mental capacity altogether - is that it is just a basic fact that some people cannot make decisions for themselves in any commonly accepted sense of the word ‘decision’” (InCraigie et al. 2019, p,164).

Given improvements in healthcare, there are a lot of people living with advanced dementia. This does not represent a tiny percentage of decisions that need to be made for which it is extremely difficult, and sometimes impossible, to determine people’s wishes. It is therefore not helpful or even ethical to promote a concept (such as everyone having legal capacity irrespective of the ability to make a decision) which only works well or makes sense in relation to the majority. It leaves the door wide open to abuse and discrimination.  If the needs and the situation of this subgroup of the population were properly addressed, without having to twist or distort the concept to make it work, their legal capacity could be better respected and promoted.

Moreover, Parker (2016, p.387) asks, “what exactly does a requirement for support in decision-making amount to, particularly in relation to people who cannot understand relevant information, appreciate consequences, act voluntarily or communicate decisions?” People may find themselves faced with unrealistic expectations if it is assumed that they can be supported but support is not available or appropriate. People from minority ethnic groups, for example, who do not have a good command of the national language, are not known to the people charged with their support and have no family, would in many cases lack culturally appropriate support.

In the context of total support, which critics might argue amounts to substitute decision making, the CRPD calls for determinations of people’s best interests to be replaced by determinations of ‘will and preferences’. Where it is not possible to know this/these, a ‘best interpretation of will and preferences’ is proposed so as to ensure that people with disabilities enjoy the right to legal capacity on an equal basis with others (Committee of CRPD 2014, p. 5).

It is problematic, however, when there is no information available at all about a person’s will and preferences, and also when the person in question did not provide any indication of trust in a supporter. Various solutions have been proposed such as the observation of people ‘in a friendly manner’ over a period of time, paying attention to their gestures and as far as possible involving them in decision making through activities which enable the exploration of their likes and dislikes (Devi 2103). Provided that people are able to communicate in some way, even if not in the conventional way, this might help guide supporters but it is doubtful whether such an approach would be feasible in all situations (e.g. when supporters have been appointed by a court, are not familiar with the person concerned and have many people to support within a limited period of time).

Flynn and Arstein-Kerslake (2014) describe the role of facilitators (in the context of total support) as being to imagine what a person’s will and preferences would be, but one could ask whether this is realistic. In some cases,  the only knowledge one has of a person is certain characteristics such as age, gender and diagnosis, and perhaps some visible signs which might (rightly or wrongly) suggest ethnicity, religious beliefs and socio-economic background. Any assumption of will and preferences can therefore only be based on stereotypes and personal bias, and risks reflecting and perpetuating prejudice and discrimination. In some cases, it could be claimed that appropriate and adequate support was provided and that the person was properly involved in the decision-making process. However, this is, after all, a matter of opinion. In some cases, such claims could hide an abuse of people’s rights and constitute subtle coercion.

One approach proposed is to look for subtle signs in a person’s behaviour and another is through a narrative construction of personal identity, which involves other people finding an answer to the question “who is the disabled person?” – based on their life story of values, aims, needs and challenges (Pearl 2013). Both approaches, however, necessitate the involvement of someone who knows the person very well, and are open to abuse. Questions arise such as:

  • Does a certain facial expression or gesture really communicate agreement or could the opposite be the case?
  • Does the person’s life story of values really correspond to the decision being made?
  • How well does the supporter really know the person with dementia and their values and needs?
  • How long is it since the supporter spent much time with them?
  • How close was this person, ever, to the person with dementia?

Skowron (2019) draws attention to the ambiguous nature of the term ‘best interpretation’, pointing out that it could be referring to the outcome or the process of interpretation. A key issue is whether supporters should be doing their best, even when extremely difficult, to involve people in decisions about their lives or simply adopting the best approach to effective interpretation. Skowron suggests that “interpretation implies familiarity with the thing interpreted” (2019, p. 126) and that the Committee of the CRPD asks supporters to interpret the unknown rather than to determine it. One way of understanding the term ‘best’ in this context would be ‘true’ in the sense of one interpretation that is not better than another interpretation but rather one that is the closest to ‘fact’ (i.e. to what the person does actually want). A person’s will and preference is not, however, set in stone. Kvale and Brinkmann (2009) describe the collection of qualitative data using the analogy of a miner and a traveller, whereby data is not a treasure to be uncovered intact if you dig deep enough with the right tools but rather like a story that a traveller pieces together through interaction with people in the course of a journey and which is constructed and developed as a consequence of that interaction. The same could perhaps be said of a person’s will and preferences. These do not lie there intact but are constantly constructed and reconstructed in a particular context within a changing environment and social context.

This has led to debates about different levels of will and a distinction being made between preferences related to a particular matter and more general beliefs and desires based on deeply held, reasonably stable and reasonably coherent personal values (Smuzkler 2017, cited in Skowron 2019). This is slightly reminiscent of Dworkin’s experiential and critical interests and aside from the persistent problem of interpretation, there is a risk of deciding on other people’s behalf what is most important to them, and failing to validate their right to evolve in terms of what they consider important in life. The experience of having a condition, such as dementia, can lead to significant changes in priorities and wishes and there is a risk of trapping people and failing to recognise their right to change. 

Skowron (2019) concludes that ‘best interpretation’ is not solely an approach to be adopted as a last resort when it is impossible to determine people’s will and preferences. Rather, it is a call to include people with disabilities in everyday interpretive practices, for clarity on how to interpret will and preferences in general, and for a realisation that will and preferences are not static but dynamic. This calls for attention to the way that people (including supporters) are always in some way making assumptions. It could also be understood within the context of the social construction of meanings.

Combined supported decision-making model

In this last subsection, we consider a practical and ethical way forward based on the model developed by Scholten and Gather (2018). They argue that supported decision making should not necessarily completely replace substitute decision making but should be perceived in the framework of reasonable accommodation. They propose a ‘combined supported decision-making model’ which combines supported decision-making with competence assessment (2018). This is based on the view that it is sometimes permissible to deny people the right to make their own decisions but that this should only be the case for people whose functional decision-making capacity is substantially impaired and if all resources of supported decision-making have been exhausted.

The combined supported decision-making model respects and promotes the autonomy of people with dementia in three ways:

  1. it respects the decisions of people with dementia who have decision-making capacity;
  2. it promotes the autonomy of people with dementia whose decision-making capacity is impaired by supporting their decisions; and
  3. it respects the precedent autonomy of people with dementia whose decision-making capacity remains impaired despite the provision of support by basing substitute decisions on the will and preferences of the person. 

At the same time, it protects people with dementia who are vulnerable due to impaired decision-making capacity against abuse and undue influence.

The combined supported decision-making model proposed by Scholten and Gather (2018) consists of the following six steps.

  1. Presumption of decision-making capacity:Everyone in our society should initially be deemed competent to make their own decisions and their decisions should be treated as carrying legal effect. This also holds for people with dementia.
  2. Rebuttal of the presumption:The presumption of decision-making capacity can be rebutted only if there are concrete indications that a person might lack decision-making capacity. A diagnosis of dementia is not enough to rebut the presumption of decision-making capacity. A diagnosis of dementia is, however, a relevant factor, since dementia is a risk factor for impaired decision-making capacity (Kim 2010, pp. 42-44). A diagnosis of dementia should trigger an assessment of decision-making capacity only if other factors also exist, for example, the person shows abrupt changes in their mental state, refuses recommended treatment  or consents to particularly risky or invasive treatment (Grisso and Appelbaum 1998, pp. 61-76). A refusal of recommended treatment should be considered in the context of the stakes involved. This should be based on reflection about the balance between the consequences of refusal and the possible effects of treatment on the person’s health, potentially resulting in a more structured assessment of a person’s decision-making capacity.
  3. Assessment of decision-making capacity:An assessment of decision-making capacity consists of a semi-structured conversation of 20-30 minutes about the decision to be taken. During this conversation, the assessor should assess whether the person is able to (a) understand the potential consequences of the various options, (b) apply this understanding to their own situation, (c) evaluate the consequences of the treatment options in light of their values and commitments, and (d) communicate a treatment choice (Grisso and Appelbaum 1998, Kim 2010).
  4. Supported decision-making:If the assessment shows that the person possesses the required abilities, they can make their own decisions and these decisions will carry legal effect. If, on the other hand, the assessment shows that the person’s decision-making abilities are substantially impaired, supported decision-making should be provided in order to enhance the person’s abilities and bring them in the position to make their own decisions. As examples of supported decision-making, Scholten and Gather (2018) mention everyday interventions (e.g. giving time to adapt or providing tranquil surroundings), interventions that improve the quality of the disclosure information (e.g. enhanced consent procedures), interventions that facilitate communication (e.g. plain language, braille or sign language) and social support from family, friends or peers. Support could also incorporate elements of shared decision making, subject to the person with dementia being in favour of such support.
  5. Monitoring:During the provision of supported decision-making, the conversation about the decision to be taken should continue and it should be monitored whether the support provided enhances the person’s abilities up to a point at which they are in the position to make their own choices. In this process, it should also be monitored whether support people (consciously or unconsciously) exert undue influence on the person.
  6. Substitute decision making:If it turns out that supported decision making enhances the person’s abilities to a sufficient extent, they can make their own decision and this decision carries legal effect. If supported decision-making proves insufficient and all reasonably available resources for support have been exhausted, a substitute decision maker should make a decision on behalf of the person. The guiding question for substitute decision makers is not what they prefer, nor what they would prefer if they were in the person’s situation. Rather, they should ask themselves what the person would want in the situation if they had decision-making capacity. The answer to this question can be seen as the “best interpretation of the person’s will and preferences” (Szmukler 2019). Evidence for the person’s will and preferences is provided by (a) an advance directive, (b) previously communicated preferences with regard to the choice at hand, (c) the person’s values and commitments, and (d) the person’s best interest. This is a prioritized list, meaning that substituted decision-makers should make decisions based on, for example, the best interest of the person only if all the other sources of evidence about the person’s will and preferences are unavailable or insufficiently clear.

Recommendations on legal capacity and decision making

1. The following recommendations should be considered in combination with those related to the various issues discussed in Part 4 of this report.

2. It should be presumed that a person with dementia has legal capacity unless:

  • there is reason to suspect that the person’s condition may be negatively affecting their decision-making capacity (not merely that they have a diagnosis of dementia) AND
  • all possible measures have been taken to support them to make a particular decision and this has not been successful.

3. Any restriction of legal capacity:

  • should be in relation to a specific decision, skill or area of decision-making,
  • should take into account possible fluctuations of decision-making capacity and the possibility of someone being able to decide on the same issue on another occasion,
  • should not be based on the assessment of a skill that a person has not yet acquired but may be capable of learning with time and support, 
  • should not be more extensive/far-reaching than necessary,
  • should have been made after a legal or official procedure, recognised by the State and for which the person with dementia was involved, heard and supported,
  • should be open to being challenged AND
  • should not be irreversible.

4. The provision of necessary, relevant and timely support should be organised in a systematic and structured manner such as the combined supported decision-making model.

5. People with dementia who lack legal capacity in relation to a particular decision or area of decision making (e.g. managing finances or making a will) should not be publicly labelled (e.g. as ‘incapacitated’ or ‘incompetent’) or asked to reveal such information unless strictly necessary.

[1] An example of this is the German term ‘entmündigt’.

[2] 2006, Ch. 6, cited by Parker 2016

[3] For more on this topic, please see subsections on “Total support and substitute decision making  - how to decide”.

[4] Same as above.    

[5] Note: This is a matter of perceptions often fuelled by the media. Several mental health organisations refer to research which suggests that alcohol and drug use is a more reliable predictor of violent behaviour than is mental disorder and that the vast majority of violent acts are committed by people who do not have a mental disorder.

[6] Labour Senator Mary Moran quoted in “thejournal.ie” – 17/12/2015

[7] One example is the under treatment of osteoporosis in people with dementia, even though osteoporotic fractures are common amongst people with dementia (see Haasum et al. 2012 - doi.org/10.1007/s00198-011-1636-8).

[8] See subsection on “Ethical persuasion and influence in the context of shared or supported decision making.

[9] https://www.nice.org.uk/guidance/ng97/resources/antipsychotic-medicines-for-treating-agitation-aggression-and-distress-in-people-living-with-dementia-patient-decision-aid-pdf-4852697005

 

 
 

Last Updated: Tuesday 09 March 2021

 

 
  • Acknowledgements

    The report entitled “Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

Options