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Cross-cutting concepts and issues

2020: Legal capacity and decision making

Dementia

Dementia is an umbrella term which describes the symptoms that occur when the brain is damaged as a result of one or more diseases or conditions. There are over a hundred different types of dementia, the most common ones being Alzheimer’s dementia, vascular dementia and dementia with Lewy bodies. A person may actually be affected by more than one type of dementia. Dementia is a syndrome. This means that it consists of a common cluster of symptoms linked, for example, to memory, language, comprehension, reasoning and orientation. Dementia is usually a progressive or chronic condition. The symptoms tend to develop slowly but steadily over several years. Consequently, in combination with external factors, dementia makes it increasingly difficult to carry out everyday tasks. Although the prevalence of dementia is higher amongst older people, dementia is not a natural part of growing old.

Aside from legal capacity, which focuses on the right to make binding decisions, the capacity to do things and make decisions (decision-making capacity), is also important in the context of dementia.[1] There is not one but numerous capacities covering a range of tasks (such as making coffee, driving a car, following the thread of a conversation and doing calculations etc.) and a range of decisions. Such decisions could, for example, include what to have for dinner, where to go on holiday, whether to attend a concert, as well as decisions with more serious consequences such whether to have an operation, how to invest or spend large sums of money and whether to get married or divorced.

People carry out tasks with varying degrees of success and skill. However, having dementia tends to make it more difficult to carry out routine activities, which used to be straightforward and taken for granted, such as cleaning, getting dressed or washing the car, as well as more complex activities such as driving or managing finances. People often devise coping strategies so they can manage relatively independently for longer. Many people with dementia at some point need some kind of assistance or care, as well as measures to support decision making. It is important that the right level of appropriate support is provided when needed so that people with dementia can maintain their independence and exercise their autonomy for as long as possible. Choosing the kind of support needed and who should provide it are also ways to exercise autonomy.

The kind and level of support needed may fluctuate because different capacities (i.e. to do things as well as to make decisions) are dependent on the task, context and situation. This covers a wide range of factors such as the time of day, the complexity of the task or decision, levels of awareness, noise and other distractions, stress, the effects of medication and so on.  The ability to successfully carry out a task, which includes making certain decisions, cannot be explained solely in terms of people’s impairments or medical conditions. Practices, attitudes and the way that society is organised can also help or hinder capacities and affect the full participation of people with dementia in society.

Disability

In keeping with the social model of disability, the impairments that people with dementia have and the interaction of these within society (e.g. lack of appropriate support and adaptations, as well as ignorance and lack of consideration) may result in disability. This means that people with dementia do not benefit from the same rights and opportunities as other people to participate in society. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an international human rights treaty. It  was adopted in 2006 and has been ratified by all Member States of the European Union (EU) and by the EU itself in December 2010. The EU and its Member States are therefore committed to ensuring respect for the human rights of everyone with disabilities and to achieving this through the adoption of new legislation and policies, and by reviewing existing measures. Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD 2006) states,

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

The early disability movement was set up by people with physical disabilities and many people still associate disability with physical impairments (as still reflected in the universal symbol of disability as a person in a wheelchair). It has expanded over the years to incorporate people with a more varied range of impairments and disabilities. Alzheimer Europe, for example, recently established closer ties with the European Disability Forum and emphasises that article 1 of the CRPD also applies to people with dementia.

The provisions of the CRPD reflect the social model of disability and a human rights discourse, which seeks to ensure independence, freedom of choice, and full and active participation of people with disabilities in all areas of life and society. This may be achieved through rules, regulations and laws, as well as through carefully planned and meaningful involvement of people with disabilities in society. The PANEL principles are often provided as useful guidance for the implementation of a human-rights based approach. The PANEL principles are:

Participation (of rights holders)

Accountability (of duty holders towards rights holders)

Non-discrimination and equality (of duty holders towards rights holders)

Empowerment (of rights holders)

Legality (of duty holders’ actions)

The European Commission has provided further guidance to using the PANEL principles in the form of the FAIR flowchart. This consists of:

establishing theFacts,

Analysing the rights at stake,

Identifying who is responsible for bringing about change and

Reviewing any action taken[2].

Not everyone with dementia considers themselves as having a disability or wants to identify with disability. Similarly, not everyone who experiences dementia has the same objectives. Positive and supportive actions, based on the principles of solidarity, justice and mutual respect should be encouraged, whilst taking care to avoid generalisations about what people want. People should not be obliged to define themselves and should not be officially labelled on the basis of disability or of particular care needs (e.g. being referred to as a “Pflegefall” in German, which literally means a “care case”) (Deutscher Bundestag 2010). Shakespeare et al. (2017) suggest that whilst people with dementia will vary in terms of their willingness to be identified as disabled, they, like other groups in society, can still use the CRPD as a ‘tool to advance their rights’. It should be noted that the term ‘disabled’ is often used as a political statement which suggests that people are disabled by society, rather than as a description of a personal, intrinsic characteristic. Morris (2001, p.3) states,

“We therefore use the term “disabled people” to describe what is done to us. This language politicizes our experiences and it takes the focus away from our impairments being the problem and puts the responsibility onto the society in which we live.”

The CRPD gives disabled people certain rights because the countries which have ratified the CRPD have committed to certain obligations towards disabled people.

The CRPD does not provide a list of conditions which count as disability. This is perhaps in keeping with a move away from the medical model of disability which locates disability within the person and their condition, without making a distinction between impairment and disability and without acknowledging the role of the environment in contributing towards disability. The absence of such a list may, nevertheless, sometimes make it more difficult to challenge and eventually change perceptions of what disability is amongst relevant governmental agencies and authorities     . To complicate matters, in some countries there is no legislative definition of disability. This is the case in Denmark and Finland. Moreover, in some countries which do have a legislative definition of disability, such as in the Czech Republic, Estonia, Latvia and Poland, the concept of disability is narrower than in the CRPD (Council of Europe 2020).[3] Consequently, the CRPD does not always succeed in practice in promoting the rights and wellbeing of people with dementia.

Finally, it is important to avoid looking at disability in terms of ‘them’ and ‘us’. Disability (including that linked to dementia) is not always visible, and impairments may result in varying degrees of disability or indeed none at all. Some people with disabilities, especially resulting from impairments acquired later in life, may already have deeply ingrained negative views about disability. This may also affect their self-esteem and willingness to be defined as disabled. It has also been suggested that people with disabilities consider some disabilities more or less acceptable or desirable than others (Deal 2003).

Discrimination

Stigmatization

Stigmatization is a process and a complex social phenomenon which is relevant to the discussion about discrimination against potentially vulnerable groups. It involves:

  • the identification and labelling of socially salient characteristics,
  • negative stereotyping,
  • cognitive separation (considering people with those characteristics as ‘other’ in the sense of ‘them’ not ‘us’, as mentioned above),
  • devaluation/loss of social status,
  • discrimination,
  • and emotional reactions (Link and Phelan 2001, 2006).

The social construction of stigma is also inextricably bound to the exercise of power and to social structures (Parker and Aggleton 2003, Link and Phelan 2006, Mahajan et al. 2008 and Scambler 2009). Discrimination can occur in the absense of stigmatization but it is also an essential component of it. A particular characteristic/attribute comes to be considered as a stigma (sometimes called a mark)  because of the meanings associated with it.  These can change over time and differ from one social setting to another (e.g. in the case of having tattoos, being divorced, being left-handed or having an artificial limb). Some attributes are fairly stable in being considered as stigmas whereas others gradually become less socially salient. Whilst a great deal of progress has been made, people with certain disabilities and medical conditions (e.g. dementia, schizophrenia, learning disabilities and leprosy) continue to experience stigma, and hence discrimination.

In the literature on stigma, the emphasis is often on perceived difference and on a range of contributing factors such as concealability (and visibility), course/progression (how the attribute develops or worsens over time), disruptiveness, aesthetics and origin (perceived responsibility) (Jones et al. 1984). Perceived threat or ‘peril’ plays a key role in the social construction of stigma (Jones et al. 1984, Stangor and Crandall 2003) and may increase the tendency to emphasise difference (Levey and Howells 1994). Perceived threat can take several forms. It can, for example, be linked to a challenge to the established moral order or to the stability and cohesion of the dominant social group, to contagiousness or even to behaviour which risks violating personal space or physical integrity) (Hinshaw 2007).

Perceived similarity can be worrying as it may heighten people’s fears that something bad could happen to anyone, including themselves (Lerner 1980). People who have made a separation, such that they see people who have dementia as completely different to those who haven’t (including themselves), may feel protected. Stereotypes and negative images of advanced dementia (which are often generalised to dementia in general) may thus have a double function in amplifying perceived difference and thereby providing a sense of security, but also contributing towards stigma (Gove et al. 2016). The role of powerful emotions, particularly deep-seated fear, and the lack of power of certain groups in society, makes it difficult to overcome discrimination. Restrictions of legal capacity by definition involve some loss of power.

The nature of discrimination

A common feature of various definitions of discrimination is that discrimination consists of people being treated differently on the basis of certain characteristics and that such differential treatment is in some way detrimental to them or unfair. The issues at stake usually revolve around advantages and opportunities. This can also include the opportunity or right to do things that contribute towards society, such as donating money to charities, serving on a jury, giving blood or taking part in research . There are different types of discrimination such as direct, indirect, harassment, instruction to discriminate, discrimination based on perceived disability and discrimination by association (as described by the Council of Europe 2020). Anticipated discrimination (like the threat of coercive measures or the assumption that freedom will be restricted) can be equally damaging, especially in the field of mental health and for people whose legal capacity has been retricted.

Discrimination is described in the CRPD as being a violation of the inherent dignity and worth of the human person (Preamble, paragraph 8). Scholten, Gather and Vollmann (in press) point out that the CRPD is the first human rights document that specifically refers to disability as one of the socially salient attributes that should not be considered as a justifiable grounds upon which to make a distinction, exclusion or restriction.  The CRPD set out to eliminate discrimination against people with disabilities. It takes the stance that it is discriminatory to deprive people with disabilities, including those who lack decision-making capacity, of their legal capacity. According to Scholten, Gather and Vollman (in press), a combined supported decision-making model, which may involve substitute decision making if deemed necessary, does not constitute discrimination. One reason for this is that the potential loss of legal capacity is not based on belonging to a particular group (e.g. a marginalised or socially salient group), on a diagnostic label or on an irrelevant property. Rather, it is based on an assessment to make a specific decision about a specific issue at a specific moment in time, having been provided with all possible appropriate support. Please see the next section on ‘Different approaches to support and empowerment’ for a brief overview of some of the other approaches. For a full discussion of the concept of discrimination in relation to legal capacity in the context of the CRPD, please refer to the article by Scholten, Gather and Vollmann (in press).

Reasonable accommodation

The justification to treat people differently sometimes is reflected in the CRPD in the concept of ‘reasonable accommodation’ which means,

“necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others all human rights and fundamental freedoms” (CRPD 2006, §5.3).

The duty to provide reasonable accommodation applies to a wide range of stakeholders, including healthcare providers and providers of goods and services amongst others. It is a means and also an obligation to put an end to any situation of discrimination based on disability. This could, for example, involve making adjustments to buildings or buses, such as ramps and signposting, to make them accessible to everyone. It could also involve adapting procedures and services so that everyone can benefit from them and providing advice and support so that people can all enjoy not only the same opportunities but the same outcomes. It is therefore not unethical to treat people differently, even on the basis of shared characteristics, provided that it does not disadvantage certain people based solely on their membership of a socially salient group. An understanding of the difference and relationship between equality and equity is important in this context. An approach based on equality involves treating everybody in the same way without taking into account differences between people, which may be inherent, linked to circumstances or structurally determined.

Equity is therefore not about simply providing everyone with the same opportunities but about fairness and equality in outcomes. Issues related to inequity need to be addressed when striving for equal opportunities and outcomes. With regard to the image of a baseball match[4] (please see below), it is not about giving everyone the same box to stand on regardless of whether they need it (image on the left of equality) but it’s about giving people as many boxes as they need to be able see over the fence and watch the match that others might be able to watch without need to stand on a box (image on the right of equity). The concept is also linked to that of solidarity. In the context of shared or supported decision making and inter/personal interactions with people with dementia, it is important to consider what reasonable accommodation would mean and what would be considered ‘reasonable’ as opposed to disproportionate or interfering.

Respect for personal autonomy

Individual autonomy

The concept of legal capacity is closely linked to that of autonomy. In Western ethics and political philosophy, autonomy is often described as “a state or condition of self-governance, or leading one’s life according to reasons, values, or desires that are authentically one’s own” (Taylor 2017). Much of the current debate surrounding autonomy is linked to the work of the 18th and 19th century philosophers Immanuel Kant and John Stuart Mill, as well as to the earlier work of René Descartes and John Locke (Gómez-Virseda, de Maeseneer and Gastmans 2019). However, the term ‘autonomy’ dates back to ancient Greek times when it was used in connection with self-rule or sovereignty of city states. It stems from the Greek term ‘autos’ (meaning ‘self’) and ‘nomos’ (meaning ‘rule’). The original concept of self-government in relation to a city state has been extended to that of self-government in relation to individual human beings. The opposite of autonomy is heteronomy, which means being governed by outside influences or external constraints. Autonomy is often described in terms of the ability to make individual, fully-informed and independent decisions (Gómez-Virseda et al. 2019), which renders it almost synonymous with decision-making capacity, with a focus on isolated decisions rather than decision making as an ongoing dynamic process. It is also often associated with necessary conditions and capacities for having it, such as:

  • freedom of will (not being unduly influenced or forced),
  • independence (in this context, not being dependent on others to make decisions and not being restricted in the range of options available due to being dependent on others for care or support),
  • self-determination (being able to take decisions and act in ways that allow people to lead the life they want to live, albeit within certain unavoidable constraints, linked to living in civilised societies),
  • sense of self (decisions and acts should reflect people’s sense of self - which has led to debates about critical and experiential interests[5], as well as about current and past ‘selves’),
  • individuality (recognition that a people’s acts and decisions should reflect their own wishes and desires, unique character and even eccentricities).

Autonomy was referred to in the Belmont report (1978) in relation to the principle of ‘respect for persons’ in terms of treating people as autonomous agents and protecting those with diminished autonomy. This was further developed by Beauchamp and Childress in their influential publication on biomedical ethical principles (2001) where it was one of four broad moral principles, namely respect for autonomy, nonmaleficence, beneficence and justice. Gómez et al. (2019) point out that discussions about autonomy are often linked to the concepts of personhood[6] and dignity. According to Hanssen (2004), the desire to act ethically sometimes results in professional carers feeling that they are not respecting a person if they do not act in accordance with that person’s wishes (even if the person is unable or unwilling to make a decision, or if respecting those wishes would result in serious injury or harm).  This is perhaps linked to the terminology of respect associated with the concept of autonomy (i.e. respect for persons and respect for autonomy) and/or to growing recognition that personhood ought not be considered as dependent on the possession of various capacities, but rather on merely belonging to the community of human beings.

The exercise of autonomy is usually dependent on people having certain information, as typically emphasised in debates about informed consent to treatment or to participation in research. Often, it does not give sufficient attention to key values such as justice, social responsibility (Gómez-Virseda et al 2019) and the fiduciary relationship between doctors and their patients (see also subsection on consent and support in Part 3 of this report -add cross reference to exact page here). Hanssen (2004) describes the provisions in the Norwegian Nurses’ Code of Ethics as requiring respect for the patient’s right to make choices and the provision of opportunities to make independent choices, as well as adequate, individualised information to enable them to do so. For example, determining whether or not to move into a residential care home may depend on knowledge about how good it is, whether the staff are friendly, speak one’s language and are competent, how much it costs, whether friends and visitors would be able or likely to visit, what the other residents are like, how much privacy there is, what other options there are instead of going there etc. These questions need to be considered alongside other questions such as:

  • Was there a real choice or was it necessary to choose between two or more unsatisfactory options (e.g. linked to structural discrimination or to socio-economic inequalities)?
  • Whilst the choice may have been made freely, could there have been some form of subtle pressure influencing the decision (i.e. at the interpersonal or societal level)?
  • Was the information suited to the person’s level of education, literacy and understanding of the language in which it was written?
  • Was appropriate support available to help the person to obtain and understand the relevance of the information for their life or situation?

Discussions about autonomy frequently focus on decision-making capacity[7] but justice, equity and solidarity are also linked to autonomy. People with dementia do not necessarily have the same options and the threshold for accommodation that is considered ‘reasonable’ may well be different to that for other groups (e.g. for people with other disabilities who are in paid employment). Consequently, the possibilities for self-governance may well be restricted to a smaller world with fewer potential roads to go down (i.e. limiting the exercise of autonomy to the choice between a rock and a hard place).

Relational autonomy

Different people attach greater or lesser importance to different factors commonly associated with autonomy and may have a different understanding of what autonomy is. In a systematic review carried out by Gómez-Virseda at al. (2019), individual autonomy is described as being based on a ‘misconception of the individual self’ (i.e. on an autonomous agent being an atomistic self, sovereign and unified, self-transparent to their individual beliefs and values and self-interested in their strategic choices). They further argue that individualistic autonomy, as portrayed in bioethics, has an ethnocentric bias and overlooks other values such as family harmony, filial piety and community fealty. Loza and Omar (2017), for example, emphasise the focus in the Arab culture on a doctor–patient–family relationship, not on a doctor–patient relationship, and point out that 20 Arab States included a reservation to article 12 of the CRPD, namely against everyone having the right to exercise legal capacity. Such oversight is problematic in today’s increasingly multicultural societies.

Hanssen (2004) suggests that in Western culture, autonomy is very much focused on what Childress described as ‘first order autonomy’. This stands in stark contrast to the concept of autonomy promoted in more collectivist or interdependent societies where it is common for decisions to be made collectively and for some members of society to defer decision making to others (e.g. married women to their husbands, unmarried women to their parents or brothers, or people in general to healthcare professionals). This would constitute ‘second order autonomy’.

It could be questioned whether handing over decision-making power to others (e.g. to fathers, husbands or brothers) is really an autonomous decision, given that those who do so did not choose their social position within society or the cultural traditions surrounding decision making. In some contexts, as mentioned earlier, the concept of autonomy as an ethical principle and even a condition for respect for the individual is so deeply ingrained that there is a risk of putting pressure on people to take decisions that they would rather defer to others or make with others. This is also relevant to the issue of shared and supported decision making and to the importance of respecting cultural diversity and promoting intercultural care and support.      There is a need to be sensitive to cultural traditions whilst avoiding leaving the door wide open to paternalism. 

There has also been increasing criticism of the emphasis on independence in relation to autonomy. Agich (2003), for example, suggests that

“the standard concept of autonomy in bioethics stresses the ideals of independence and rational free choice, ideals that appear ephemeral in the face of the wide range of impairments that cause individuals to need long-term care” (Agich 2003, p.1).

He further suggests that with people who are dependent on others, or faced with obstacles due to illness or disability, autonomy may be expressed through attempts to adapt and cope irrespective of whether reasons for actions or choice can be rationally explained.  According to Boyle (2014), people all pass through varying degrees of dependence and interdependence in their lives and are never fully independent. We all rely in some way on others. Similarly, Kittay calls for dependency to be reinstated as a central part of any human relation (2011) and for assistance to be viewed as a resource, not a limitation. Autonomy has also been described as the way that a person expresses their sense of self, in their relationships and in their values and preferences (Nuffield Council on Bioethics 2009).

In debates about legal capacity, we need to move away from the emphasis on respecting autonomy as the sole      means to promoting      independence. Care ethicists emphasise that autonomy is not the same as independence and that it can only be developed in relationships with others (Widdershoven and Abma 2011). Subtler approaches to autonomy empower a broader section of society in that they avoid discriminating against people who have characteristics which differ to those of the typical/hypothetical rational and independent person which lawmakers have in mind. They promote equity by insisting on the right to receive appropriate and necessary support to make decision-making possible whilst questioning the need to demonstrate decision-making capacity. They also allow for different approaches to life, accepting the valid role of emotions and relationships in decision making. We live in multicultural societies and ethnic groups do not all have the same priorities and values. People from different ethnic groups must have opportunities to make decisions which reflect their will and preferences, reflecting different priorities and values. Relational autonomy fits well with the concept of shared-decision making.[8]

Paternalism

Respect for autonomy needs to be balanced with other principles, values and ethical approaches. There has been some criticism of the tendency to over-emphasise respect for autonomy in the context of healthcare and research (e.g. through the overriding emphasis on informed consent). Some scholars and healthcare professionals call for a greater focus on the principles of beneficence and non-maleficence (i.e. acting for the benefit of others and not inflicting harm), especially in the context of dementia care (Smebye, Kirkevold and Engedal 2015). We would argue against creating a hierarchy of ethical principles (i.e. against claiming, for example, that autonomy is more important than beneficence, or that beneficence is more important than justice etc.). The unique factors in every situation need to be considered. This includes the context, the people concerned and the relevance of different ethical approaches, principles and values in that situation.

Reflection on the relationship between respect for autonomy and concerns about beneficence and non-maleficence should remain part of any debate surrounding legal capacity, but needs to be accompanied by reflection about paternalism and best interests. However, there is a risk in making things too flexible that people will not know what to do. A structured framework for reflection would therefore be helpful such as, for example, the dignity enhancing ethical framework for nursing care developed by Gastmans (2013). This has a series of components, which people are encouraged to work through. One of these is for people  to do what     they think and feel is ‘right’. Another is to act on the decision in the knowledge that they can justify it to themselves and others and that they can communicate it to the people involved. The final step of the framework is to reflect afterwards on what happened and to consider, with hindsight, what could perhaps  be learnt from the situation.

Certain legal provisions resulting from a restriction of legal capacity could be considered as being paternalistic. According to Dworkin (2020):

“Paternalism is the interference of a state or an individual with another person, against their will, and defended or motivated by a claim that the person interfered with will be better off or protected from harm.”

A distinction has been made between soft and hard paternalism. Soft paternalism consists of listening to and trying to determine what a person’s wishes are and either taking measures, attempting to persuade someone to do or not do something, or trying to guide them so that they do not make poor choices or make decisions that are likely to have negative consequences for them. Hard paternalism also has the aim of benefiting the person and/or preventing or mitigating harm but measures are imposed regardless of what people feel is best for them and of their decision-making capacity.

Dworkin summarises the key issue, with regard to soft or hard paternalism, as being whether the person (to whom the paternalistic act is directed) is acting knowledgeably and voluntarily or not.  Mill argued against paternalism, describing it as interfering with a person’s liberty and freedom of choice, which is dependent on having opportunities to make responsible choices and on reflective decision making, but did consider soft paternalism as sometimes being morally acceptable (see below).

These issues can be teased out through different approaches to Mill’s hypothetical case of someone crossing a broken bridge. Mill suggested that preventing someone from crossing a broken bridge would be an acceptable form of soft paternalism if the person does not know that the bridge is broken, but as unacceptable if the person is informed about the condition of the bridge and then wants to cross it (but is prevented from doing so). A hard paternalistic approach would condone preventing the person from crossing the bridge even if fully informed about the danger and still keen to take the risk. In keeping with Conly’s notion of ‘coercive paternalism’, it would be justifiable to try to prevent the person from crossing the bridge if they lacked the ability to make a ‘rational choice’ and would be likely to make a poor choice. The justification given for this coercive/hard paternalism is that the person’s exercise of autonomy is not sufficiently valuable to offset what would be lost if they were to decide for themselves (Devi 2013). Both forms of paternalism suggest that someone knows what is best for someone else      .

Paternalism (at least hard paternalism) attributes greater value to protection from harm than to respect for personal autonomy and fails to consider the right or freedom to take risks, individual interpretations of what constitutes acceptable risk and issues related to probability (the real likelihood of harm occurring). The normalisation movement began in the 1970s and was linked to intellectual disability and deinstitutionalisation. It is relevant to the debate about paternalism as it promotes ‘the dignity of risk’ rather than protection. This means promoting respect for autonomy and the right to take part in everyday life (including the right to take risks in order to do so) but also complying with the duty of care where necessary (Peisah et al. 2013).

In keeping with the ‘harm principle’, Mill argued that a person’s freedom (and hence their right) to make decisions which involve some degree of risk should not be restricted unless it harms or puts other people in danger. This suggests that people should all be allowed to make their own decisions, even ones that are risky or do not seem to be in their own good, so long as they don’t endanger others. However, Mill also emphasised that other people may be harmed by the harm that a person causes him/herself, because people do not live in isolation but in relationships with other people.

Theoretically, this would radically reduce people’s options as many people could claim that someone else’s decision was harmful to them personally. A person may, for example, decide to forego essential treatment or pain relief and it may be extremely stressful for others to witness their suffering. Someone else might decide to give away property to a casual acquaintance or leave millions to their cat, which their children or partner would otherwise have inherited (i.e. causing great sadness, disappointment and depriving them of financial means/stability). In some countries, people are considered as having the legal and moral right to behave in this way, but if actions should, ethically speaking, not harm others, it logically follows that most decisions should be made in group consultation. Indeed, in some countries, decision-making focuses on the family unit or the community rather than the individual, but this is not the cultural norm of the majority ethnic communities in Europe. Also, many people with dementia in Europe live alone and therefore have no wider family unit or community to support them. Ethical decision making, especially in the context of shared decision making, is nevertheless moving in the direction of involving members of a person’s entourage in the decision-making process.

For people with dementia, there is always a risk of pervasive paternalism based on assumptions that they do not understand the issues at stake (e.g. due to stereotypes that because of their cognitive impairments they are unable to understand or remember the information provided or to assess risks), that other people are responsible for their wellbeing (e.g. due to blanket labelling of people with dementia as vulnerable) and that other people’s peace of mind (i.e. their wellbeing) justifies restrictions. Box 1 below provides a real-life example of a situation involving concerns for the wellbeing of a person with dementia who is able to assess certain risks and wishes to take those risks.

Box 1: Point for reflection

A lady with dementia regularly walked her dog in a nearby forest. Her husband was concerned about her getting lost and constantly reminded her to at least take her mobile phone with her. She often went out without it either because she forgot or because she thought he was exaggerating. One day, she tripped up and broke her ankle. There was no one around and she lay there for several hours until someone passed by and got help. She continued to go out walking in the forest after this incident because that’s what made her life meaningful (i.e. feeling needed and nurturing the relationship with her dog, getting fresh air, meeting people and keeping physically fit). She was fully aware that one day she might get lost or have another accident but considered this a risk worth taking, and vowed to always take her phone with her.

Questions:

Was her husband right in trying to insist on her taking her mobile phone with her?

Should he have perhaps also tried to persuade her not to go out alone?

Should other more restrictive measures have been taken before or after the accident?

Were the concerns that the husband has about his wife’s safety (which can be linked to her wellbeing as well as his peace of mind     ) sufficient to override respect for her autonomy?

How would you justify your responses to the above questions if you were asked?

[1] See section “About legal capacity and decision-making capacity”.

[2] See the Scottish Human Rights Commission leaflet for more details: www.scottishhumanrights.com

[3] See the Council of Europe’s HELP online course on the Rights of Persons with Disabilities (2020)

[4]  By Craig Froehle (2016)

[5] See Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom

by Ronald Dworkin (1993)

[6] For a more detailed discussion on the issue of personhood, please see AE reports on definitions and approaches and on disability: https://www.alzheimer-europe.org/Ethics/Definitions-and-approaches/Other-ethical-principles/Personhood, https://www.alzheimer-europe.org/Ethics/Ethical-issues-in-practice/2017-Dementia-as-a-disability-Implications-for-ethics-policy-and-practice/Personhood-and-the-personal-experience-of-disability

[7] See subsection on “Legal capacity in the context of the CRPD”, particularly in relation to article 12.

[8] See subsections on “Shared decision making” and “Supported decision making”

 

 
 

Last Updated: Thursday 11 February 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
 
 

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