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Introduction

2012: The ethical issues linked to restrictions of freedom of people with dementia

1.1      Background to this project

This document is the third report produced by Alzheimer Europe in collaboration with a team of experts in the framework of the European Dementia Ethics Network (EDEN), which was set up in 2009. This follows on from the work on the ethical issues linked to the use of assistive technology (AT) in 2010 and the ethical issues linked to dementia research in 2011.

A multidisciplinary working group was set up, which included a person with dementia and carers, as well as representatives from Alzheimer Associations and experts in different domains such as medicine, medical ethics, philosophy, psychology, law and disability. The group met twice within the year, each time for a full day, in order to discuss the various issues, comment on the drafts and formulate recommendations. Further discussion about the final document took place between members of the group by means of email.

The group had three specific objectives:

  1. To provide an overview of past and current ethical debates on the topic of the

 restriction of freedom of people with dementia;

  1. To explain its position;
  2. To provide recommendations, where possible, on the topics covered.

These recommendations represent the views of the ethics working group at the time of publication, which were subsequently adopted by the board of Alzheimer Europe. They should not in any way be considered as binding on any individual or group.

1.2      Members of the working group

The members of the working group, to whom Alzheimer Europe is immensely grateful for developing these recommendations and contributing towards the position of Alzheimer Europe, are (in alphabetical order): 

Dr Anna Maki-Petäjä-Leinonen, Researcher, Faculty of Law, University of Helsinki (Finland)

Dr Antonio Burgueño Torijano, Director of the National Program to Untie the Elderly and the Person with Dementia in Spain (Spain)

Mr Dr Brenda Frederiks, Assistant Professor Health Law, VU Medical Centre (the Netherlands)

Prof. Chris Gastmans, Professor of Medical Ethics, Centre for Biomedical Ethics and Law, Faculty of Medicine, Catholic University of Leuven (Belgium)

Ms Dianne Gove, Information Officer (Luxembourg)

Ms Eleanor Edmond, Freelance trainer and consultant in capacity legislation (Ireland)

Dr Fabrice Gzil, Fondation Médéric Alzheimer, Research Programme Manager (France)  

Mr James McKillop, MBE, Scottish Dementia Working Group (SDWG) and Mrs Maureen McKillop, carer (Scotland, UK)

Ms Jan Killeen, Policy Consultant, Alzheimer Scotland (UK)

Ms Maria do Rosário Zincke dos Reis, Lawyer (Portugal)

Dr Marianna Siapera, MD, Greek Association of Alzheimer’s disease and Related Disorders, (Greece)

1.3      Key concepts

1.3.1       Dementia

“Dementia” is the term used to describe a set of symptoms that include loss of memory, mood changes and problems with thinking, orientation, comprehension, calculation, learning capacity, language and judgement. It is an umbrella term which describes the symptoms that occur when the brain is damaged as a result of one or more diseases and conditions. The ICD-10[1] definition of dementia is one of the two most commonly used classification systems for diagnosing dementia (the other being the DSM-IV[2]). According to the ICD-10, for a diagnosis of dementia to be made, the memory and intellectual impairments must be sufficient in nature to cause significant social and occupational impairment and not occur solely during a state of delirium (Grabowski and Damasio, 2004).

Dementia is usually a progressive or chronic condition. This means that the symptoms tend to develop slowly but steadily over several years. It is not a natural part of growing old even though the prevalence of dementia is higher amongst older people. There are over a hundred different types of dementia. The most common are Alzheimer’s disease (AD), vascular dementia and dementia with Lewy bodies. Often, the type of dementia is referred to by the condition which caused it although a person may actually be affected by more than one type of dementia.

Although the main symptoms of dementia are cognitive (i.e. linked to the functioning of the brain), dementia has a social, physical and psychological impact on people. Sometimes, the reactions and behaviour of people with dementia are mistakenly attributed to changes in their brains when in effect, they are responding appropriately to frustration, worry, events or the attitudes and behaviour of other people. Nevertheless, certain behaviour and reactions are often referred to globally as behavioural and psychological symptoms of dementia (BPSD). According to a 1996 consensus statement from the International Psychogeriatric Association, the term BPSD is used to define symptoms of disturbed perception, thought content, mood or behaviour that frequently occur in patients with dementia (Kozman et al. 2006). This is very important to the debate on restrictions of freedom because BPSD are stressful for people with dementia and contribute considerably towards caregiver strain (Black and Almeida, 2004). This is often a key factor in decisions to institutionalise people with dementia (Banerjee, 2009), which has consequences for their freedom. BPSD often remain problematic for professional carers and may increase the likelihood of restraint being used, which represents a further restriction of freedom.

With regard to the Diagnostic and Statistical Manual of Mental Disorders (DSM) mentioned earlier, there are currently plans to implement a new classification of various types of dementia. The new classification system will be known as DSM-5 and will result in some of the terms currently being used changing. Although the DSM classification is American, it is likely to be used in many countries or for specific purposes. The terms used in this report may therefore gradually become less common in some countries depending on the classification system used.

Also, new criteria for mild cognitive impairment (MCI) have recently been developed (Morris, 2012) which introduce possible functional problems to MCI. This blurs the distinction between mild AD and MCI. Diagnosis would therefore be difficult at that stage and to overcome this problem, some scientists suggest the need to consider MCI as a pre-stage of dementia. However, MCI is a state of cognitive decline which falls somewhere between “normality” and dementia and not a diseaseper se(Gauthier et al., 2006). Dubois and Albert (2004) question the usefulness in clinical practice of labelling a syndrome with multiple causes rather than determining the underlying disease. Not everyone with MCI will develop dementia because there are several possible causes of MCI. Some may be linked to dementia, others not. Some people with cognitive complaints do not fulfil the criteria for MCI but eventually do develop dementia (Nunez et al., 2010). As this is not very helpful, the concept of prodromal AD was introduced in 2000 to specifically describe the type of MCI which leads to AD (Dubois, 2000). 

The term “prodromal AD” is used to describe an extremely early stage of dementia characterised by an early symptom or set of symptoms which might indicate the start of the condition but before specific symptoms occur (Dubois et al., 2010). The termpreclinical Alzheimer’s disease describes theearly phases of the disease when accurate clinical diagnosis is not possible because symptoms of the disease have not yet appeared (Sperling et al., 2011). The value of labelling asymptomatic at-risk people as having a “disease” when some of them may never develop any overt clinical signs or symptoms has been questioned (Giaccone et al., 2011 writing in the Neurology Lancet in the name of the BrainNet  Europe Consortium).

The scope of this report is intended to cover people of any age who have any form of dementia, either having been diagnosed with dementia or having the clinical signs and symptoms of dementia but no diagnosis. Dementia is most common in older people and is considered an organic form of mental disorder. As will be explained in the section on reasonable accommodation, dementia is also a disability. Debates in related domains, which are relevant to a consideration of the ethical issues linked to restrictions of freedom of people with dementia, may well use terms other than dementia such as disability, cognitive impairment, mental disorder or older people. When referring to debates or research in those domains, such terminology will be used. As some debates or studies are linked to a particular type of dementia, such as Alzheimer’s disease, the same terms will be used in this report when commenting on them. In some cases, however, the points being made may also apply to people with other types of dementia.

1.3.2       Capacity

Mental capacity and legal competence

When we talk about capacity, we generally mean the ability to do something or to understand something. However, this necessitates several other skills such as understanding relevant information, weighing up the pros and cons of possible decisions, considering the possible consequences of making or not making a decision, and making, remembering and communicating the decision (Alzheimer Scotland, 2012). 

There is not one overall capacity but several such as the capacity to manage financial or administrative matters, the capacity to get dressed or washed, the capacity to take part in a conversation and so on. When a person lacks capacity with regard to a certain area of life, it may affect other areas of life and even certain legal rights such as the right to make a will, to marry or to make a binding contract. However, it is important to emphasise that people do not lose their capacities all at once or in a specific order. Some people lose the ability to carry out tasks alone but with a little help can manage. A number of factors can also affect a person’s capacity to fulfil a specific task. Capacity is task specific and may be influenced by internal and external factors (such as lighting, tiredness, the time of day, the people involved and the nature of the task or decision). Capacity should therefore always be considered in relation to a specific task at a specific time and in specific circumstances. It should not be assessed on a once and for all basis and it should not be presumed that a person with dementia lacks capacity simply because they have dementia.

Mental capacity is one form of capacity. It is the term often used to describe the capacity to make reasoned and informed decisions (i.e. based on a full understanding of the relevant issues having been given the necessary information, having weighed up the pros and cons of various possible decisions and being able to communicate that decision).

Legal competence (or legal capacity) is the term often used to describe a state in which a person is considered as having the necessary and sufficient capacity to carry out a specific task (e.g. the capacity to drive or to make a will). It represents legal recognition of the validity of a person’s choice. However, it is sometimes assessed on a once and for all basis (e.g. in the context of establishing guardianship measures in some countries) and may result in the permanent loss of certain rights (e.g. the right to drive, make a will, marry or consent to medical treatment). This is not very common nowadays but nevertheless the decision to declare a person legally incompetent or lacking legal capacity even in relation to a specific task tends to be made on a one-off decision basis after an assessment in which the person is considered to have failed to reach a threshold of competence for that task.

Although many people under the age of 18 may have the mental capacity to make medical decisions, they are not considered legally competent to do so (DuBois, 2008). The decision to declare a person with dementia legally incompetent or lacking legal capacity in a certain domain should be based on the finding that they lack capacity (usually mental capacity) in relation to that task.

  • Alzheimer Europe is opposed to the practice of declaring people with dementia completely legally incompetent. 
Self-determination and substitute or supported decision making

The observation that a person with dementia lacks the capacity to make a particular decision raises the question of how necessary decisions should be made. When a person lacks capacity, they lack the ability to exercise self-determination (i.e. to make decisions based on what they feel is best for them). The right or freedom to make decisions about one’s own life underlies practically all the topics addressed in this report and will therefore not be addressed separately. However, it is important to also consider what happens when a person lacks the ability to make decisions on their own.

All member states of the European Union have a system of guardianship whereby a person can be appointed to make decisions on behalf of someone who lacks the ability to do so (i.e. substitute or proxy decision making). Several terms are used to describe the person with that responsibility such as guardian, tutor, curator, legal representative or mentor. In some countries, different types of proxy decision maker co-exist but the scope and extent of their responsibilities differ. Increasingly, proxy decision makers are expected and even obliged to involve the person with incapacity in the decision-making process. It is sometimes explicitly stated in guardianship or patients’ rights legislation that this includes taking into consideration previously expressed wishes (e.g. as known or expressed in an advance directive). This is supported by article 12 of the United Nations Convention on the Rights of People with Disabilities (UNCRPD) (2006) particularly paragraph 3 which emphasises the need to provide sufficient support to enable people with disabilities to make decisions and paragraph 4 which emphasises the importance of respecting the person’s wishes and preferences even if they are unable to make decisions:

3. …Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

4. ….Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.

In Ireland, Amnesty International Ireland and the Centre for Disability Law and Policy, National University of Ireland, Galway (2012) recently teamed up with 15 organisations to write a set of key principles that the new capacity law of Ireland should reflect. In this document, they emphasise that everyone has the right to make decisions about their life but recognise that different levels of support may be required depending on each person’s remaining capacities.

The first level of support is that which is necessary for people who have the ability to make a decision with only minimal support (e.g. larger print). The second level of support involves a trusted person providing support to the person to make a decision (i.e. supported decision making). The third level, known as “facilitated decision making”, involves a representative determining what the person would want but where their preferences or wishes are not necessarily known. Consequently, this is only suggested as a last resort. The emphasis on giving people the support they need to make decisions rather than having other people decide on their behalf is in keeping with article 12 of the United Convention on the Rights of People with Disabilities which aims to protect people’s right to make decisions about their own lives and the principle of “reasonable accommodation”[3] (see section 2.1.1 for more details about this).

Further information about the requirements for the effective development and implementation of supported decision making can be found at:

http://www.amnesty.ie/sites/default/files/report/2012/04/PRINCIPLES_WEB.pdf

Another interesting document for further information and practical guidance on supported decision making has been produced by Jan Killeen of Alzheimer Scotland (2012) and funded by the Nuffield Council. It can be downloaded at:

http://dementiascotland.org/news/files/Dementia-Making-Decisions.pdf

These two publications also contain a number of recommendations on the assessment of capacity and the practice of supported decision making.

  • The principles of reasonable accommodation and supported decision making are promoted in this report on the ethical issues linked to restrictions of freedom of people with dementia

1.3.3       Freedom and liberty

The terms “liberty” and “freedom” are sometimes used interchangeably and this can be detected in the origin and definition of the words. Liberty, for example, stems from the Latinlibertatemwhich means “freedom” or the “condition of a free man” in the sense of being free from the interference of the government and other restrictions on personal freedom. Freedom stems from the Old Englishfreodomwhich means “state of free will, charter or deliverance” (Emelda, 2011). According to Carter (2012), the use of either term is merely a question of style despite a few recent attempts to distinguish between the two. In some languages there is only one term such as in French (liberté) and German (Freiheit). These terms should therefore be considered as synonymous throughout this text. In some cases, the choice of term used is a matter of style, whereas in others it reflects the terminology used by various authors.

Liberty has been associated with having the right and power to believe, act and express oneself as one chooses and of being free from restriction. This is sometimes expressed in terms of positive liberty which involves the freedom or possibility to act based on the presence of something (such as control, self-mastery and self-determination) or negative liberty which emphasises freedom to act without obstruction from other people or the state, based on an absence of something (such as barriers, constraints, laws and outside interference) (Berlin, 1969). The promotion of negative liberty in a given domain would therefore involve the creation of an environment or sphere of action which was free from obstacles and in some cases from State control. The promotion of positive liberty would involve addressing factors which affect the ability of individuals or groups to act autonomously. This is therefore more closely related to capacity, choice and free will.

Another distinction that has been made is between natural and social freedom. Rousseau, for example, described a basic sort of personal or natural freedom which stems from the natural state of instincts and selfishness.  Social freedom, on the other hand, was described as the civil or moral freedom, which is based on entering into a social contract and accepting a general will (Amezquita, 1992). Locke did not agree with Rousseau that people’s natural freedom should be abandoned but agreed that the social freedom of adhering to a general will necessitated complete involvement. Clearly, blind or unquestioning adherence to the general will does not constitute freedom. As an active citizen rather than a passive subject, people are free to challenge the ethical justification for laws and practices in society, which govern their lives or those of their relatives, friends and fellow citizens. Such blind obedience would not reflect an obligation of the social contract but an evasion of one’s duties as a citizen (Affeldt, 1999 cited in Chappell, 2005). Yet, some practices and laws exclude or rule out the participation of certain members of society (e.g. by denying them the right to vote or failing to take their views into account) and in some cases by geographically distancing them from the rest of society.  

There are also psychological or spiritual aspects to freedom. Viktor Frankl, a psychiatrist and holocaust survivor, distinguished between freedom based on external factors and a kind of inner freedom based on the freedom to choose one’s attitude and reaction to whatever situation or condition one finds oneself in. He suggested that this internal freedom persists even when physical freedom has been taken away and when every aspect of one’s life and even body is controlled by others. This is a kind of freedom which others cannot control but neither can it be guaranteed as it represents a personal approach to life.

"We, who lived in concentration camps, can remember the men who walked through the huts of others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken away from a man but one thing: the last of the human freedoms--to choose one's attitude in any given set of circumstances, to choose one's own way." (Viktor Frankl, 1984, p.86)

Nevertheless, in the case of dementia, such freedom may become difficult to express due to cognitive difficulties or may be difficult for others to interpret or recognise. Further difficulties linked to the exercise and expression of inner freedom were expressed by Erich Fromm, a psychoanalyst and humanistic philosopher who, like Frankl, was also Jewish but who fled during the Nazi occupation. He described the acceptance and expression of freedom (in the sense of free will) as being healthy and drew attention to defence mechanisms which people use based on their fear of freedom (Fromm, 1991).   

1.3.4       Restrictions or deprivation of freedom

Opinions about what constitutes a restriction of liberty depend on definitions. Such definitions are usually made on the basis of perceptions which are shared within particular cultures and come to be formally or informally accepted. Different definitions of the restriction of freedom are used in different contexts or for different purposes. Broad, everyday definitions of the restriction of freedom might emphasise the prevention of a person from doing what they appear to want to do. This might, for example, cover preventing a person from accessing or leaving a room, defined space or building, forbidding certain actions, forcing or putting pressure on someone to do something that they do not want to do, denying them the right to make certain decisions.  Restrictions are not only imposed on people by the state or in the context of residential care; a person’s freedom may be restricted by any other person and by any means in their own home too.

Narrower definitions are sometimes used, for example in scientific studies, and can be useful when it is important to count instances of restrictions of freedom which meet the defined criteria (Qureshi, 2009). A narrow definition of the restriction of freedom might focus on confinement of a resident to a room or area for a specified period of time, or preventing a person from leaving the nursing home. This would exclude many other forms of restriction of freedom but would make it possible to compare instances of such restrictions with regard to specific criteria such as male and female residents or geographical location provided that such information had also been collected.

There are also legal definitions which may change over time as attitudes towards restrictions of liberty and practices change, and as new means of restraint are developed. The Austrian federal law on the protection of personal freedom during stays in homes and other care institutions (known as the Heimaufenthaltsgesetz) recently added electronic means of restraint to its definition of restrictions of freedom (Niemeijer, 2010). This suggests that means of restraint are considered as a form of restriction of freedom. Definitions of restraint are addressed separately below. Legislative changes often take time and in the period leading up to the change, people may lack adequate protection. Furthermore, many people with dementia who live in care homes or in their own homes have their freedom restricted but such acts are not legally recognised as restrictions of freedom. Some practices, which are widespread or common, are not even recognised as restrictions of freedom or as being unethical.

With regard to definitions, the difference between restrictions of freedom and the deprivation of freedom is also unclear. There is legislation in every member state of the European Union which lays down the conditions for the lawful deprivation of a person’s liberty. These laws are fairly detailed but tend to be restricted to the compulsory detention of a person with a mental disorder in an institution or establishment for a set period of time for treatment or in the interests of their safety and/or that of other people.  A variety of terms are used depending on the country which if translated might be involuntary or compulsory “detention” or “internment” or the restriction or deprivation of liberty or freedom.  Apart from these laws, a clear definition of deprivation of freedom is often lacking.

In the HL v. UK case, which is discussed in section 2.1.2, the European Court of Human Rights made the following distinction between the restriction of liberty and the deprivation of liberty:

“The distinction between a deprivation of, and restriction upon, liberty is merely one of degree or intensity and not one of nature or substance”[4].

This suggests a continuum with minor restrictions of liberty at one end, gradually becoming more restrictive and with severe restrictions, defined as deprivation of liberty, at the opposite end. The issue is not merely one of the duration of the measure or the size of the area to which a person is restricted. It can also be a matter of a high level of control being exercised over a person’s movements (Cole, 2009). However, there are no criteria to measure the degree or intensity of the restriction.    According to Cairns, Richardson and Hotopf (2010), the boundaries between lawful restrictions of liberty and the deprivation of liberty remain blurred. They further point out that with regard to definitions of deprivation of liberty, there is a lack of clarity as to what constitutes an objection to the measure. In another case involving DE and JE v. Surrey County Council[5], the Joint Committee on Human Rights favoured a view of the deprivation of liberty as consisting of a person not being free to leave rather than of having their freedom within an institutional setting curtailed (Cairns et al., 2010).  After the Bournewood case (see section 2.1.2), new legislation (known as the “Deprivation of Liberty Safeguards – DOLS) was introduced in England to provide better safeguards for people who are cared for in care homes and hospitals, and have been assessed as lacking capacity (Wigan Council, 2012). The application of the DOLS has been consistently problematic due to the wide range of administrative and judicial interpretations of “deprivation of liberty”[6].

There is perhaps a tendency to consider restrictions of freedom in relation to geographical/spatial restrictions (e.g. being held against one’s will in a certain place or having one’s physical actions and movement restricted). The scope of this project extends to a reflection on the ethical issues linked to restrictions of freedom to live one’s own life without unjustified interference and to play an active role in society. We recognise the very close relationship between freedom and civil or human rights in that having certain rights represents the freedom to participate in society on an equal basis with other people and to live one’s life as one sees fit. 

Whereas a broad definition of “restriction of freedom” allows recognition of the numerous ways in which people’s freedom is restricted, narrow definitions encourage precision when discussing these ways. In this report, we adopt a very broad definition of restrictions of freedom as being:

  • The limitation of a person’s freedom of movement, action or choice, or of their participation in society.

Throughout the report, precision will be provided as to how this can be interpreted. Legislation is different in every country and does not necessarily reflect what is considered ethical at this moment in time. Opinions as to what is ethical may influence legislation but sometimes agreement that something is ethical (or unethical) only comes some time after a change in law. In this report, we may occasionally refer to legislation in order to provide background information about how various issues are addressed in society. However, we will not limit our position to what is or is not legal. Also, although guardianship is a legal measure designed to protect people with incapacity which tends to result in loss of freedom, this will not be addressed in this report but may be discussed in future work on proxy decision making.

This report also reflects a human rights approach which recognises that personal freedom is an inherent human right independent of national laws and European conventions. As such rights apply regardless of distinctions such as age, race, gender, language or religion. They are relevant to the principles of justice and equity. Consequently, any measures which serve to restrict a person’s freedom in any way must be justifiable on non-discriminatory grounds (i.e. not on discriminatory categories such as age or having dementia).

1.3.5       Restraint

The ways in which freedom is restricted may be broadly defined as measures or means of restraint. Examples include physical and psychological restraint as well as the use of mechanical, chemical, environmental, electronic and other means or devices. Coercive measures could also be considered as a means of restraint as they restrict a person’s freedom to choose not to do something. Broad definitions of restraint include the following:

  • All (physical and verbal) measures which restrict the freedom of clients (Health Care Inspectorate, the Netherlands, 2008 cited in Frederiks, 2012)
  • ….anything which interferes with or stops a resident from doing what they appear to want to do (Clarke and Bright, 2002).
  • ….when the planned or unplanned, conscious or unconscious actions of care staff prevent a resident or patient from doing what he or she wishes to do and as a result place limits on his or her freedom (Mental Welfare Commission for Scotland, 2006).

The Dutch Care and Coercion Bill distinguishes between different degrees of restraint covering not only severe examples such as physical restraint, seclusion and the covert administration of medication, but also electronic surveillance devices and all kinds of subtle forms of coercion. Examples of the latter include influencing clients or forbidding them to visit a friend, watch their favourite series on television or have a cigarette (Frederiks, 2012).

In research settings, more precise definitions are sometimes used, especially with regard to physical restraint:

“…any artificial physical limitation applied to restrict patients’ mobility (i.e. straps, bands, sheets or pyjamas).”(Weiner, Tabak and Bergman, 2003)

“any device, material or equipment attached to or near a person’s body and which cannot be controlled or easily removed by the person and which deliberately prevents or is deliberately intended to prevent a person’s free body movement to a position of choice and/or a person’s normal access to their body.” – (Retsas et al. 1998 in Gastmans and Milisen,

The second definition, which according to Qureshi (2009) is based on US regulations, provides a lot of detail about a single form of restraint and includes certain criteria which might also apply to other forms of restraint such as deliberate intention to restrain, “normal” access to one’s body (which might be based on value judgements) and the degree of difficulty to free oneself. This enables examples of restraint to be counted and compared. It also creates more criteria to be fulfilled before a measure qualifies as physical restraint.  

Narrow definitions run the risk of being too restrictive and may amount to “all or nothing” approaches in which there is no possibility to distinguish between varying degrees of restraint. A person is either restrained or not restrained. As discussed in relation to the restriction or deprivation of a person’s freedom, the degree and extent of restriction is important. Such definitions may also rule out certain forms of restraint simply by the terminology used. Rules and regulations, psychological measures and certain coercive tactics might not be considered as restraint depending on the definition used. This could result in people subjected to their use not being adequately protected.

The use of restraint, particularly on frail, older people with dementia, is generally considered unethical or harmful and is rarely justifiable. However, there may be exceptional cases when this is not so and it could be considered lawful and/or ethically justifiable. To avoid confusion, it is preferable to attribute a neutral meaning to the term “restraint” (Commission for Social Care Inspection, 2007) and then to consider whether or not its use is ethical. This means that a definition of restraint should preferably not include a reference to deliberate prevention or a deliberate intention to prevent or restrict freedom of movement.

In some countries, such as England, the law specifically addresses the use of restraint, outlining what does and does not constitute restraint and establishing conditions governing the lawful use of restraint (Mental Capacity Act, 2005). The Human Rights Act of 1998 requires care providers to take preventative measures to ensure that people’s rights are respected and this has implications for the use of physical and chemical restraint as well as for respect for privacy (Commission for Social Care Inspection, 2007). Restraint is defined in Section 6 of the Mental Capacity Act 2005 (of England) as:

  • the use or threat of force to secure the doing of an act that the individual resists; or
  • the restriction of the individual’s liberty whether that individual resists or not

It is further stated that the measure must be in the person’s best interests, necessary in order to prevent harm, a proportionate response to the likelihood of the person suffering harm and proportionate to the seriousness of that harm.

The issue of restraint has recently attracted considerable attention in the Netherlands following a public outcry about the treatment of a young man with behavioural problems who was mechanically restrained on a 24 hour, daily basis in a room with no windows. This lasted for three years (Frederiks, 2011). In addition, the Netherlands has recently added electronic restraint to its legal definition of restraint. This is also the case in Austria.

The Finnish Mental Health Act (No. 1116) of 1990 addresses the use of coercive measures, abuse and the unlawful deprivation of freedom (which includes the use of restraint) (Mäki-Petäjä-Leinonen, 2011). However, this is only applicable in the context of involuntary treatment in psychiatric hospitals or wards. People with dementia are usually treated elsewhere e.g. in nursing homes where restraint is sometimes used.  There is still no adequate legislation in Finland covering the use of restraint in ordinary hospitals or nursing homes. For this reason, the National Supervisory Authority for Welfare and Health, known as “Valvira”, has produced guidelines ("Use of restraint for patients").According to the Valvira, the use of restraint is only permitted to prevent serious harm to a patient’s health or safety. It further states that:

  • a doctor must make a written/documented statement of his/her decision concerning the use of restraint for a patient.
  • the need for restraint has to be evaluated regularly.
  • the proper equipment must be used in accordance with guidelines on the use of restraint.

In 2010, the Ministry of Social Affairs and Health established a working group whose aim was to assemble the provisions relating to the deprivation of liberty and self-determination of all patients/clients of social and welfare, within the same act if possible. The reform of the legislation specifically addresses the deprivation of liberty in the care of people with mental disabilities and dementia. Its goal is also to strengthen multidisciplinary co-operation and the availability and development of services in such a way as to lessen the need to limit liberty and self-determination.

Most definitions of restraint focus on its use in the professional care setting rather than in people’s private homes. Clearly, this is influenced by the examples selected and quoted and the fact that they are derived from publications and legal provisions relating to residential care. However, apart from definitions used in research which do not always make this distinction (as the populations selected for study are in any case mainly from care homes), most debates about restraint focus on the residential care setting.

The use of restraint in people’s own homes is not as well documented and not as easy to monitor. If detected, it might be considered as abuse rather than restraint and clearly, the wrongful use of restraint does amount to abuse. Abuse of elderly people has been defined as:

“A single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person.”(World Health Organisation, 2012).

Abuse does not only happen to older people with dementia. Younger people with dementia may also be subjected to restraint, in some cases perhaps more so (e.g. if they have aggressive behaviour) as they may be perceived as more physically threatening than an older, frailer person. However, some national laws particularly mention old age as an aggravating factor in accusations of abuse.

Attitudes towards the use of restraint within the home can perhaps be likened to those towards domestic violence between couples in the not too distant past when it was considered a private matter to be sorted out between the parties concerned, with the state only intervening in extreme cases. In this report, many of the studies cited are set in the residential care setting and certain issues discussed in this report may be more applicable to that setting than to the home setting.  However, the scope of this report is the restriction of freedom of people with dementia in their homes (or where they reside in another person’s home), in residential care settings and within society in general.

In this report, we will adopt a broad definition of restraint as being:

  • Any method, device, substance or procedure which restricts a person’s freedom of movement in the private or health and social care setting, irrespective of the intent to restrain.

This definition covers physical, chemical, psychological, electronic and environmental restraint as well as coercive measures which restrict freedom of movement. Further specification will be provided in the relevant sections.

1.3.6       Ethical issues

What do we mean by “ethics”?

Broadly speaking, ethics is a branch of philosophy which seeks to address issues related to concepts of right and wrong. It is therefore closely linked to morality in that it is about what morally ought to be the case rather than how things necessarily are. It is about how we ought to act towards one another and covers numerous decisions we make in everyday life, as well as decisions with implications for life or death (Mattiasson and Hemberg, 1998). Ethics cannot be equated with religion, even though many religions advocate ethical behaviour, because ethics applies to everyone whereas religion is limited to certain groups of people (Verlasquez et al., 1987). Neither is it just about doing what feels right or going along with your “gut feeling” as sometimes this might not be what is actually morally right. One cannot rely solely on laws as history has shown that laws sometimes condone unethical behaviour. Similarly, it is not because everyone does something a particular way, that it is right.

People will differ in their opinions as to what is right and wrong. Often they will base their opinions on “facts” but even facts are often no more than shared points of view about what something is or isn’t (HENT, 2002). Often there is no simple answer as to whether something is right or wrong as ethical issues tend to be multi-faceted. People are therefore sometimes confronted with an ethical dilemma. This has been described as a situation “with conflict between two or more ethical principles and each solution may contain unpleasant outcomes for one or more involved parties” (Crisham, 1996 in Yamamoto and Aso, 2009). It may be necessary to decide on a particular course of action rather than another and in so doing to give greater weight to certain moral concerns at the expense of others.

Nevertheless, according to Chan (2001), any decision taken about a moral problem should be based on reasoning and require justification. People who take decisions or act in a way which has implications for the freedom of people with dementia do not necessarily need to have expert knowledge about ethical theories. However, they should be aware of the ethical issues at stake and be able to reflect on them in order to determine what is right or wrong in a particular situation. This is essential when the person whose freedom risks being restricted lacks the capacity to make decisions. They may be giving clear signs that they are opposed to a restrictive measure, other people may be trying to decide on their behalf, some arguing in favour of a particular measure being used, others against its use. When making decisions at home, conflict may arise between the needs and desires of different members of the family. Even in situations where the person with dementia has sufficient capacity to make particular decisions, there is a risk of other people taking decisions which do not correspond to their wishes or wellbeing based on facility (i.e. for the ease or convenience of other people) or a lack of understanding about dementia.

Informal and professional carers come from a wide range of backgrounds and have a wide range of personalities and characters. For some, becoming a professional carer of people with dementia was a deliberate choice reflecting a desire and interest in caring for people with dementia. For others, it is perhaps “just a job” and they may have little training or understanding about dementia.  Informal carers (i.e. relatives and close friends) may provide care out of dedication, love or a sense of duty. Some may have just drifted into care and may feel resentment, that they had no choice. Some people do not consider themselves as “carers” but the decisions they make may have an impact on the freedom of people with dementia (e.g. with regard to voting, the way of life within care homes or decisions to move a person with dementia into residential care). People are not ethical or unethicalper sebut may behave ethically or unethically towards people with dementia. Certain personality traits, such as integrity, trustworthiness and honesty, may increase the likelihood of people behaving ethically or unethically but sometimes unethical conduct may be linked to lack of knowledge or awareness. It is essential that people who make decisions affecting the lives, in particular the freedom, of people with dementia have a sufficient understanding about dementia and, for decisions to be ethical, that they are aware of and able to reflect on ethical issues.

What are the different kinds of ethical theories?

There are different types of ethics. One of these, namely “applied ethics”, applies ethical theories to real life situations which matter to people. In some cases, the issue at stake may be a matter of principle or well-being, in others it may be a matter of life or death. In this report, we are interested in ethical issues relating to restrictions of freedom. The different theories which might be considered or partly guide ethical decision making are briefly described in this section. This is not a comprehensive review. As a group, we do not favour a particular theory over another. Each has its own strengths and weaknesses and may appeal to each person’s values and logic more than another theory. Those which a person finds meaningful may influence the way they apply concepts to real-life situations.

Some approaches to ethics focus on the outcome. This might involve judging whether the consequences of the act are good or bad (Noble-Adams, 1999) or what the best outcome would be for the greatest number of people (Peach, 1995 in Aita and Richer, 2005). In the utilitarian approach, for example, which was formulated by Bentham and Mill in the 19th century, actions are considered as right if they are likely to promote the greatest happiness for the greatest number of people. Actions likely to result in the opposite would be considered as “wrong”. Evaluations of the various outcomes tend to focus on pain and pleasure. However, as pointed out by Petrini (2011), this approach only considers the amount of good and not the way in which it is distributed. Furthermore, there may be more than one issue at stake and it would be difficult to measure maximum happiness. Maximising happiness may even conflict with other values such as justice, fairness, solidarity and honesty.  In addition, there are a lot of different interpretations as to the value of different outcomes as well as different motivations driving action and different opinions about the importance of particular ethical principles.

Virtue ethics, on the other hand, emphasises the character of the moral agent rather than rules or consequences, as the key element of ethical thinking, asserting thereby that the right action will be chosen by a suitably ‘virtuous’ agent (Timmons, 2002). Beauchamp and Childress (2008) considered the relevance and desirability of five virtues for health professionals. These included compassion, discernment, trustworthiness, integrity and conscientiousness. They also considered the ethics of care which focuses on relationships involving care, responsibility, trust, fidelity and sensitivity with particular reference to the doctor-patient relationship.

Other theorists consider whether the nature of an act is right or wrong irrespective of the consequences. Something is believed to be good if it is consistent with moral rules and principles. This is often described as a deontological theory and a classic example is Kant’s theory. He stated that as man[7] is a moral agent, he is responsible for his actions. They are intrinsically right or wrong. However, Beauchamp and Childress (2008) define deontological theory as being that some features of actions rather thanor in addition to consequences make actions right or wrong. Critics argue that the consequences of actions should not be ignored (Petrini, 2011). Deontologists typically have sets of standards which they use to guide them in their actions and in making decisions that they consider morally right. Such standards are made up of a collection of ethical principles. These are expressions of agreed values (or “rules of thumb”) which serve to guide people’s actions in order to achieve the best possible ethical outcome, thereby encouraging people to consider the broader context and respect other people rather than being preoccupied with their own interests (State of Victoria, 2006).

The best known ethical principles in the biomedical field are perhaps those inspired by Beauchamp and Childress (2008, p.12) which are: 1. Respect for autonomy, 2. Nonmaleficence, 3. Beneficence and 4. Justice. As will be seen in this report, they are not the only principles of relevance to the ethical issues linked to restrictions of freedom. However, as frequent reference is made to such principles within the context of ethical decision making in relation to people with dementia, they are briefly explained below.

Autonomy is traditionally considered as being linked to self-determination and exercising choice. For this reason, consent is often central to debates about autonomy. As people with dementia experience a gradual deterioration of their cognitive capacities, their ability to make autonomous decisions is jeopardised but in many situations they can still contribute towards decision making. This is reflected in the second of the two main aspects of respect for autonomy identified by Beauchamp and Childress (2008):

1.    Autonomous actions should not be subjected to controlling constraints by others

2. Respectful treatment in disclosing information, probing for and ensuring understanding and voluntariness, and fostering autonomous decision-making.

The capacity-based approach to autonomy, with its emphasis on rationality and being free to choose, has been challenged by Agich (2003) who 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). Agich 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.  A richer concept of autonomy has also been proposed by the Nuffield Council on Bioethics (2009) which suggests that autonomy should also be considered as the way that a person expresses their sense of self, in their relationships and in their values and preferences.

Respecting the principle of beneficence involves trying to do what is best for someone, whereas respecting the principle of non-maleficence involves avoiding doing something that might cause them harm. The two principles are often mentioned together as in many cases, respecting one goes hand in hand with respecting the other. Frankena (1973), for example, who combined the two principles under the term beneficence, described four main goals, namely not to inflict evil or harm (what is bad), to prevent evil or harm, to remove evil, and to do or promote good (quoted in Dawkins, 1998, p.10). In relation to people with dementia, these two principles are often reflected in discussions about the need to protect the physical safety and integrity of people with dementia.

In health care ethics, the principle of justice can be subdivided into three categories: fair distribution of scarce resources (distributive justice), respect for people’s rights (rights based justice) and respect for morally acceptable laws (legal justice) (Gillon, 1994).  As people are not all equal in the first place (in certain respects), justice must be more than just treating people equally and it may be unjust to treat unequals equally (Gillon, 1994). Finally, Perry, Beyer and Holm (2009) suggest that respecting the principle of justice requires that the needs of the individual be balanced with those of the wider community. 

Some people believe that ethical principles are universal (ethical universalism) whereas others take the view that such principles are related to a specific culture or individual choice (ethical particularism) and hence not generalisable to people with different cultural beliefs. The latter has also been referred to as communitarian ethics which maintains that moral thinking has its origins in the historical traditions of particular communities and that consequently, it is a cultural rather than abstract concept in that communities share values, customs, institutions and interests (Petrini, 2011). However, many societies or geographical areas are fairly multi-cultural nowadays with people from different cultural backgrounds living together, sharing certain values and differing on others. Petrini (2011) warns against an over-emphasis on communitarian ethics which might result in a “tyranny of the majority” whereby the majority defines what is beneficial, morally right or “a good life”, and which may result in an unfair outcome for some groups of people (Petrini, 2011). 

Contrary to approaches which focus on the majority or the community, “personalism” strives to achieve common good by promoting and enhancing the good of the individual guided by values such as respect for life, sociality and solidarity, and responsibility (Petrini, 2011).

Care ethics

With care ethics, the emphasis is not on the act or on consent to the act, nor is it on the decision. Rather, the emphasis is on the care relationship/process, on being receptive to what happens to the person, on respect and trust (Mahieu and Gastmans, 2012). This is characterised by reciprocity. There is a relationship of trust whereby the person with dementia trusts another person/people to look after them. The necessity for such trust is partly based on the potential vulnerability of people with dementia and is dependent on handing over a certain degree of control to others. Carers therefore have a considerable responsibility for the wellbeing of the person with dementia and care ethics provides a framework within which to provide ethically acceptable and appropriate care to people with dementia.  Concepts of relevance to care ethics also include dignity, singularity (focusing on the unique nature of each person), historicity (reflecting the historical dimension of human existence) and relationality (considering what is meaningful to each person in terms of their relationship to others). These issues are discussed in more detail in section 2.3.3 on sexuality and relationships.

Finally, when people make statements about ethical issues (such as “it is wrong to chemically restrain people with dementia”), how should they be understood? Four possibilities have been suggested, namely moral realism, subjectivism, emotivism and prescriptivism. In that order, expressions might be considered as a statement of a fact, a statement about how the person making the statement feels about a particular issue, an actual expression of that feeling or an instruction (or alternatively prohibition) (BBC, 2012). In this report, we provide background information on numerous practices and try to provide a balanced explanation about all the issues at stake and different arguments. At the end of each main section, however, we make recommendations. These should not be considered as “facts”, nor as expressions of emotions but as the opinion of the working group, as approved by Alzheimer Europe, as to what should or should not be done in a typical situation or in general. However, they cannot be considered, strictly speaking, as instructions or prohibitions as no two situations or people are the same. Those responsible for making a decision about the restriction of liberty of a person with dementia must weigh up all the relevant issues and consult with everybody concerned, making every effort to involve the person with dementia in the decision-making process. Hopefully, this report and the recommendations will be helpful in that context. In most cases, the recommendations are more a question of principles to bear in mind when trying to come to an ethical decision.

1.4      Structure and layout of the report

Chapter 1 has provided background information about the project and a description of what we mean by some of the key terms used such as dementia, freedom and liberty, the restriction or deprivation of liberty, restraint and ethical issues. In the description of “ethical issues”, we explained that this involves applying ethical theories and principles to a specific issue. Our interest is in restrictions of liberty.

Chapter 2 divides issues relating to the restriction of liberty into four main topics:

  1. Restriction of the freedom to choose one’s place of residence.
  2. Freedom to live in the least restrictive environment.
  3. Restriction of freedom to act according to individual attitudes, values and lifestyle preferences.
  4. Restriction of the freedom to play an active role in society.

The first section of chapter 2 is about involuntary placement in an institution, hospital or care home. This involves the restriction of the liberty to continue living in one’s own home or with relatives or friends in a familiar environment. It is not just about preferences as to where one would like to live. On the contrary, it is about being legally obliged to leave one’s home, to give up a certain degree of independence and to adapt to community life (e.g. getting on with or tolerating other people and adhering to group living rules and practices). This section also covers placement in a home or institution on a “voluntary” basis. The main emphasis is on the process and implications of being admitted into residential care or an institution for care or into a hospital for necessary treatment. Issues related to life once there are addressed in the third section of chapter 2.

In the second section of chapter 2, we look at the various methods (other than legislation or voluntary agreement) which are used to restrict the liberty of people with dementia in their daily lives. The theme in this section is the freedom of people with dementia to live in the least restrictive environment. This covers topics such as physical restraint, chemical restraint and various psychological, environmental and electronic measures or devices. The use of assistive technology, such as surveillance devices and tracking devices, are only briefly addressed as this was the topic of the ethics working group in 2010.

In the third section, we consider how the freedom of people with dementia to live their lives according to their wishes is sometimes restricted. The focus is not on whether a person has the capacity to make a decision but rather on respect for their individuality and right to self-expression. We therefore consider how a certain way of life and routines are sometimes imposed on people living in residential and semi-residential care settings which fail to take into consideration their individual preferences, habits and foibles and may be based on values they do not share. One of the topics covered is that of sexuality and relationships between and involving people with dementia.

The fourth section consists of a reflection on the ethical issues related to the restriction of the freedom to play an active role in society. Issues covered include voting, making decisions with legal implications (such as a will) and driving.

Each of the four sections provides background information about the topic covered and examines some of the main ethical issues related to that topic. A set of recommendations can be found at the end of each of the first three sections and at the end of each sub-section in the last section of the report.

These are not definitive recommendations about which course of action or approach is always right. It is always necessary to reflect on each particular case rather than adopting a black and white or recipe-like approach. In many respects, the recommendations resemble principles to think about rather than actions to take. The right decision will depend on a range of factors including first and foremost the needs and wishes of the person with dementia but also of carers and healthcare professionals. Two overriding principles must also always be borne in mind, namely proportionality (i.e. that the decision is in keeping with the scale of the problem) and subsidiarity (i.e. that the least restrictive measure is applied first).  

[1] The International Statistical Classification of Diseases and Health Related Problems (10th revision) of the World Health Organisation.

[2] The fourth version of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association.

[3] Article 2 of the CRPD:'Reasonable accommodation' means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to people with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms; …..”

[4] HL v. United Kingdom (2005) 40 EHRR 437

[5] JE and DE v. Surrey County Council and EW (2006) EWHC 3495 (Fam)

[6] For more details, please see the Care Quality Commission report (2011), http://www.cqc.org.uk/sites/default/files/media/documents/dols_report_2010-11_-_summary_-_foundry.pdf

[7] “man” should be understood as meaning human beings (i.e. men and women). The term is used here simply to reflect the language usage at the time the statement was made.

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Report "The ethical issues linked to restrictions of freedowm of people with dementia" as part of Alzheimer Europe's 2011 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received frm Fondation Médéric Alzheimer Europe and the Alzheimer Europe Foundation for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer
 
 

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