AT, ethical issues and legislation
2010: The ethical issues linked to the use of assistive technology in dementia care
- What do we mean by "ethics" and ethical principles
- Applying ethics to AT
- A few ethical principles
- A wider framework - quality of life, personalism and relationships
Broadly speaking, ethics is a branch of philosophy which seeks to address issues related to concepts of right and wrong. One might say that ethics in some ways is about what ought to be, not what is. We simply would not need to consider what we ought to do if we always did it as a matter of course. When focusing on morality and ethics, we are therefore concerned with what morally ought to be the case. Certain ethical principles or obligations that tell us what we ought to do are generally accepted and can be conceived as the expression of normative ethical systems. They are not contingent upon cultural or temporal features such as tradition, religion, or law. For instance, the ethical principle ‘to do no harm’ can be considered as one of those principles, and all ethical theories embrace this principle, though some might put more emphasis on it than others.
There are a few different types of ethics but the one we are interested in is “applied ethics” which applies ethical theories to real life situations. Ethics is relevant to day-to-day care giving and in day-to-day medicine and routine medical decision making. However, new technologies can create situations of insecurity and lack of normative guidance. This is why applied ethics often focuses on controversies and dilemmas, which might erroneously suggest that besides these controversies routine medicine and the care giving are morally neutral.
Philosophical ethics has to a certain degree always been applied to real-life. Aristotle, for example, believed that there was no point in (studying) ethics unless it would have some beneficial effect on the way one lived one’s life - or at least inform one how one ‘ought to live’. But, since the 1950s, there has been a renewed interest in detailed discussion of particular issues of contemporary practical concern. One area in which ethics has always played an important role is medicine, in particular in issues involving life and death. Recently, partly as a result of advances in science and technology, new areas of enquiry have been explored. In addition, certain parts of medical practice which previously lacked their own distinctive ethics have begun to develop them (Crisp, 1998).
Much of applied ethics is concerned with three theories:
- Deontological ethics: a set of ethical beliefs, in which principles and values are seen by adherents to be self-evident and not in need of more basic proof.
- Utilitarianism: which is the doctrine which holds that acts are right solely insofar as their consequences maximise general happiness.
- Virtue Ethics: which 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).
As implied above,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. Nevertheless, according to Chan (2001), applied ethics is not subjective as any decision taken about a moral problem should be based on reasoning and require justification.
Ethics can also be understood as a set of standards which people use to guide them in their actions and in making decisions that they think are 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).
Different forms of technology are used every day which can make our lives easier or more enjoyable (e.g. espresso coffee makers, machines to bake bread and remote controls for the television or garage doors, to name but a few). However, with the exception of closed circuit TV in public places, this rarely poses ethical dilemmas as people are free to choose whether they want to use such technology in their own private domain based on the information available to them. On the other hand, it could be argued that this is a rather simplistic perspective and one could ask to what extent we really are free in relation to technology. Can we, for example, afford not to engage in the world of Internet, email, GSM communication etc?
In the case of children, certain ethical issues may arise but in most cases responsibility for decision-making is given to adults. In the case of dementia, the people using the technology are not necessarily able to fully understand the implications and may not have the capacity to give full consent, yet its use may be beneficial, enabling them to accomplish tasks that they would otherwise be unable to manage. Although the use of AT may sometimes create ethical dilemmas, often its use simply draws attention to ethical dilemmas which were already present but largely ignored or not clearly defined (Marshall, 2000).
Niemeijer et al. (2010) suggest that it would be wrong to consider AT as “morally neutral” because some devices and systems include characteristics which affect the rights of those using them and cannot be removed as they are “substantially rooted in the conception of the application” (Casas et al., 2006). The way that AT can be used is often dependent on decisions made during the design phase (Kubitschke et al., 2009). In the context of residential care, Niemeijer et al. (2010) point out that debates over the ethical issues linked to the use of AT tend to focus on the moral acceptability of the effects of its use rather than on its useper sewith conflict often arising when the interests of institutions do not correspond with those of the residents.
Although it may sometimes be possible to choose whether or not to use a particular device and to try to consider the ethical issues linked to that choice, Hertogh (2010) argues it is perhaps somewhat naïve to think that in general people are free to choose whether or not to use technology and to use it in ways that are morally more or less acceptable. Indeed, people’s realities are in principle inextricably bound to the use of technology. It is part of our “condition humaine.” Consequently, the ethical question is not so much about what application of technology we want or do not want, but rather how technology shapes our world, our values and ourselves, and how we can best guide its inescapable role in our lives in a morally viable way. This question concerns all human beings, not just people with dementia (Hertogh, 2010).
People are not always aware of the ethical issues linked to the use of AT and it is likely that most act in good faith, trying to do what they feel is best for the person with dementia and bearing in mind his/her wishes. A description of different kinds of ethical issues which could be relevant to the use of AT would therefore be useful along with advice on how to act in the most ethical manner. Unfortunately, standard solutions or recipes for ethically sound behaviour cannot be provided as every situation is different as are the people involved. Often, acting in an ethical manner requires the assessment of the situation, people and possibilities as well as a consideration and in some cases balancing of various ethical principles in order to be able to decide on the best course of action for the person with dementia.
In the ethics section of the Alzheimer Europe website, ethical issues are discussed in detail. A brief description of some of the main ethical principles will be presented here.
There are several ethical principles which are frequently mentioned in the context of healthcare and ethics. Perhaps the most well-known are those described in the Belmont Report of 1979, namely autonomy, beneficence and justice, to which Childress and Beauchamp (2001) added non-maleficence. Others include solidarity, dignity and integrity to name but a few.
Some ethicists strongly believe in the necessity of developing a hierarchy of ethical principles but others point out that there are cultural differences in the importance given to various principles and that a range of factors come into play when considering which principles are to be given priority in any specific situation (e.g. based on the people involved, their lived experiences and the severity of the disease). Moreover, in some cases, the respect of certain ethical principles may be interdependent. For example, autonomy, which is considered extremely important in the Western world, nevertheless makes no sense in the absence of other principles such as dignity and equity. Sometimes, part of dealing with ethical dilemmas involves trying to find the right balance between competing, but equally important ethical principles such as autonomy and beneficence. Sometimes, striving to respect an ethical principle for one person, may result in failure to respect an ethical principle for another person (e.g. giving one person the freedom to decide where he/she would like to walk may result in an intrusion into the privacy of another person, especially in community living arrangements). The following ethical principles are therefore not presented in any order of importance:
- beneficence and non-maleficence
- (respecting ) dignity and personhood
- (respecting) integrity
- justice/equity (fair distribution of resources)
- (recognising) solidarity and dependency
- parentalism and paternalism
- (recognising) vulnerability
Autonomy is traditionally considered as being linked to self-determination and exercising choice. For this reason, consent (which is discussed in detail in Part 3) 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 Beauchamps and Childress (2001):
- Autonomous actions should not be subjected to controlling constraints by others
- Respectful treatment in disclosing information, probing for and ensuring understanding and voluntariness, and fostering autonomous decision-making.
However, the Danish philosophers Rendtorff and Kemp (2000) describe 5 main meanings of autonomy which are as follows:
- The capacity for the creation of ideas and goals for life
- The capacity for moral insight
- The capacity for “self-legislation” and privacy
- The capacity for rational decision and action without coercion
- The capacity for giving informed consent to medical experiments
(Source: Ebbesen and Pedersen, 2008, p. 4)
The description of autonomy by Rendtorff and Kemp is quite capacity based, which might seem to not apply greatly to many people with dementia, but the authors also suggest that for certain groups of people (including people with dementia), the main emphasis should not be solely on autonomy but also on supplementary principles such as respect for dignity, integrity and vulnerability (please see below for further details) (Ebbesen and Pederson, 2008).
The capacity-based approach to autonomy, with its emphasis on rationality and being free to choose, has been challenged by Agich (2003). He draws attention to the paradoxical conjunction between autonomy and the long-term care of people with illness or disability:
“Individuals need long-term care because they suffer illnesses and incapacities that compromise their ability to function independently or to choose rationally. Yet 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 emphasises the necessity to consider the symbolic meanings of both autonomy and long-term care which are socially constructed and hence culturally determined. With regard to autonomy, he draws attention to associations between autonomy and self-reliance, personal preference and self assertion, adding that in societies where particular importance is given to the concept of autonomy, being dependent may be regarded negatively or as a defect and people who are dependent on others as having less value.
For Agich, actions and decisions are embedded in the habits and rituals of daily life and people act and decide within a complex web of interactions and relationships. Being autonomous therefore involves acting in the midst of all this and not in a kind of abstract bubble or vacuum. His perception of autonomy rejects the notion of a gradual development towards the status of autonomous being and of the need to preserve this, arguing instead that people are never really “finished” but always in the process of development and of dependency on each other for such development within a social context. For 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.
Beneficence and non-maleficence
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), who combined the two principles under the term beneficence, described four main goals:
- One ought not to inflict evil or harm (what is bad),
- One ought to prevent evil or harm,
- One ought to remove evil; and
- One ought to do or promote good
(Frankena, quoted in Dawkins, 1998, p.10)
Determining what is good for a person with dementia or “in their best interests” is not necessarily an easy task for three main reasons:
- Personal preferences, views and value judgements of those making decisions on behalf of a person with dementia can easily slip into the decision-making process.
- The preferences and feelings of the person with dementia about various issues may have changed since the onset the disease. Proxy decision makers may be unaware of this and the person with dementia may be unable to communicate this to them.
- In group settings, such as day care centres, hospitals or nursing homes, something that contributes to one person’s wellbeing may well be detrimental to that of others, or even lead to actual harm.
Considering what is best might involve an assessment of the balance between the extent and duration of positive experiences with that of negative experiences (Griffin, 1986) or a more objective consideration of what influences happiness, either positively or negatively (Finnis, 1980). The Nuffield Council of Bioethics (2009) considers cognitive dysfunction an important objective factor negatively affecting wellbeing. AT can therefore play an important role in enhancing wellbeing, thereby respecting the principle of beneficence.
With regard to the principle of non-maleficence, even if the use of AT would be somewhat unpleasant or lead to the non respect of other ethical principles, not using AT might in certain situations be too risky (e.g. perhaps leading to accidents or neglect). Consequently, respecting beneficence and non-maleficence involves answering a few questions such as: Whose best interests? Who decides and assesses best interests? How is this done? Can such assessments be made for groups of people? How can the two principles be balanced?
Dignity and personhood
Respecting the dignity of people with dementia is essential for their wellbeing, for the maintenance of their relationships with other people in their entourage and of a positive care relationship. It is also recognised as a fundamental human right which is anchored in several national, European and international texts (please see Annex 1).
Sometimes, people find it easier to identify failure to respect dignity than to define what dignity is. Examples of failure to respect a person’s dignity might include not treating someone with respect, belittling, ridiculing or humiliating them, torture, ignoring or insufficiently acknowledging someone, seeing them as a member of a group rather than as a unique individual, and/or physically or mentally transgressing their personal space (Holmerová et al., 2007; Jacobson, 2007; Mann quoted in Horton, 2004). The principle of dignity is therefore closely related to those of personhood, privacy and respect.
Nordenfelt (2002) identifies four types of dignity:
- The dignity of merit
- The dignity of moral stature
- The dignity of identity
“Menschenwürde” is the dignity that is inherent in being a human being. This is sometimes but not necessarily linked to spiritual beliefs. In German, this is reflected in the term “Menschenwürde” which reflects the undeniable value of human beings regardless of their social, mental or physical properties (Tadd, 2003). Another term that is often used is “basic dignity”. People have the same degree of “Menschenwürde” throughout their whole lives and it is something that cannot be taken away from a person (Nordenfelt, 2002). It only applies to living people though.
The dignity of merit applies to people who are considered as having achieved excellence or distinction such as a high rank. This may be formally bestowed on a person or informally achieved by artists, athletes or scientists but nevertheless acknowledged and respected. This kind of dignity can be acquired and lost.
The third type of dignity, that of dignity of moral stature, is linked to self-respect and dignified conduct, as well as respecting other people’s rights. This type of dignity is not linked to any right due to one’s acts as if one’s acts resulted in rights or privileges, the moral value of the act would be considered as less.
The dignity of identity is described as the kind of dignity that people attach to themselves as integrated and autonomous people who have their own history, future and relationships with other people. This type of dignity can be shattered by other people. There is a link to a person’s perceived value and worthiness that is reflected back in the context of interaction. It can therefore be considered as an attribute that can be subjectively felt but also something which can be denied, ignored, withheld and violated. Although informal and professional carers may understand that people with dementia may sometimes unintentionally violate social norms, certain reactions (e.g. of disgust, disapproval or disdain) may inevitably be expressed (Seman, 2007). If detected by the person with dementia, his/her sense of dignity may be affected. This does not mean to say that all behaviour by people with dementia which challenges social norms is unintentional as it may actually be a form of communication, legitimate self expression or an appropriate response depending on the circumstances.
According to Seman (2007), the socialization of infants and children leads to an association between the acquisition of maturity and certain behaviours, including self-control (e.g. of bodily functions and emotional expression), with certain behaviours being reprimanded, criticized or leading to exclusion. This, combined with the general assumption that behaviour is intentional and fully controllable, may lead to negative reactions towards people who fail to meet social expectations or violate social rules, as well as self-criticism and shame from those concerned for whom such expectations are also deeply engrained.
Nordenfelt (2002) draws attention to illness, impairment, disability and old age which can rob a person of their dignity of identity. He highlights the often irreversible disablement, the knowledge of its permanent nature and the awareness that the person’s identity is forever drastically changed, his/her privacy violated and dependency on others inevitable (hence a perceived loss of autonomy).
Finally, treating people in an undignified way or leaving them in what might generally be considered an undignified state (regardless of whether they are actually disturbed by this) has implications for respect of their dignity, integrity and personhood. Nordenfelt (2002) explains that the dignity of identity is also objective because it can be violated even in cases where a person is not aware of the violation or even no longer alive. This might involve leaving a person naked in the presence of others or treating a dead body with disrespect.
Personhood, like dignity, has a fundamental inherent character as well as a socially constructed and maintained character. Consequently, perceived lack of dignity may result in people being seen as objects which could jeopardise the likelihood of authentic interaction which is essential for the respect and preservation of their personhood.
Buber (1970) identified two different ways that people relate to one another, which are also of relevance to the maintenance of personhood in people with dementia. The I-It mode of relating is one in which a person relates to the other in a cool, distanced, non-involved way which fails to fully acknowledge the individuality of the other as the other is objectified. The I-Thou mode of relating involves meeting the other person in a genuine human exchange. People with dementia may eventually lose the capacity to create and encourage a genuine human exchange. If, in addition, they have become an object in the eyes of other people, their personhood may be jeopardised (i.e. personhood in the sense of social acknowledgement of their value as unique human beings).
Josephson (2010) emphasises the origin of the word integrity which comes from the same Latin root as “integer” meaning whole number. This suggests something that is undivided and whole.
According to the Danish philosophers, Rendtorff and Kemp (2000) integrity has two moral dimensions. The first consists of a created and narrated coherence of life, in the form of a coherent and complete life story, which should not be violated. The second consists of a personal sphere for experience, creativity and personal self-determination (Ebbesen and Pedersen, 2008). Some people with dementia may have difficulty communicating their life story and protecting or promoting their personal sphere. Some effort on the part of carers may therefore be necessary to ensure that the integrity of people with dementia is respected.
Integrity might also be relevant for people faced with ethical decisions, highlighting the need to be consistent and constant with regard to their own principles and subsequent behaviour, engaging in careful consideration so as to avoid being led by events and circumstances (Josephson, 2010).
Privacy refers to the ability of people or groups to seclude themselves or information about themselves from others, thus permitting them to reveal themselves and information about themselves when they choose to do so (Wikipedia, 2010). Different cultures and different individuals have different limits and beliefs about privacy (i.e. about which aspects of themselves or information they would like to keep to themselves and which they are willing to share or make available to others). This also includes the physical/geographical boundaries of their private sphere. In some countries, the term “privacy” is not easily translated, with some using a complex description and others borrowing the English term (Anderman and Rogers, 2003).
One of the earliest legal definitions of privacy was provided by Warren and Brandeis in their article “The Right to Privacy” which was printed in the Harvard Law Review of 1890. They described it as the right to be let alone which together with the right to liberty was part of the right to enjoy life (University of Louisville, 2010).
Niemeijer and Hertogh (2009) propose four types of privacy, namely informational privacy (e.g. sensitive or personal information), physical privacy (e.g. one’s personal space), attentional privacy (e.g. unsolicited mail or telephone calls) and decisional privacy (e.g. being able to choose a particular action without interference from the state). They suggest that with medical ethics the emphasis tends to be on informational privacy but that in the case of people with dementia for whom no direct (acute) recovery is likely, the emphasis is more on physical privacy (i.e. the right to be let alone). On the other hand, they draw attention to the risk of taking this to the extreme which could lead to neglect and emphasise the need to balance the right to physical privacy with the respect for various needs such as intimacy and feelings of security.
Justice/equity (fair distribution of resources)
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). With reference to AT, justice would be linked to issues of fairness and equal entitlement and access to various devices and systems.
People with dementia are generally elderly and most eventually experience difficulties with comprehension, language and memory. Consequently, they are not ideally placed to find out about the different types of AT that are available and to demand access to it. Such difficulties are the very reason why they might benefit from many forms of AT. People with dementia who are on a low income, who are not fluent in the national language of the country and who come from other stigmatized groups may be at an even greater disadvantage.
The principle of justice also applies to the fair distribution of goods and services between different groups in society (e.g. people with learning disabilities, people with cancer, people with physical disabilities and people with mental disorders) who may unfortunately find themselves competing for their share in the limited resources available for health and social care. People with dementia should have equal access to assistive technology if and when needed. However, a diagnosis of dementia is sometimes used to deny people with dementia access to some forms of care (WHO, 2002b). Also, in some countries, as dementia is not recognised as a disability and AT is often associated solely with physical disability, they do not have equal access. It is possible that the stigma of mental illness, of dementia and associated with age (i.e. ageism) contributes towards this failure to respect the principle of justice with regard to people with dementia.
Some forms of AT are not yet mass produced and consequently fairly expensive and not readily available. Prices can also differ depending on the type of device or system needed. A study into safety and monitoring devices carried out recently in Finland tested various types of technology which ranged in price from EUR 30 to EUR 2,100 per person with an average price of EUR 600 per person (Riikonen et al., 2010). Certain devices would clearly be too expensive for some people if they had to cover the full cost themselves and one could question whether such expenditure by the State would be justifiable on the grounds of distributive justice. However, the researchers also point out that the average cost of residential care for a person with dementia in Finland comes to about EUR 3000 per month and also that the results of their study suggest that AT may delay entry into residential care.
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). However, justice may be difficult to achieve. In some countries where the availability of AT is not yet widespread, access to it is restricted to people on a very low income which means that those who do not fall into this category, but who nevertheless could not afford it themselves, are denied access. People with dementia and carers with limited resources may have no choice about the use or non-use of AT if it is the only option they can afford. Access may also be granted to people whose condition is most severe when in fact people in the earlier stages might benefit most from it.
Perry, Beyer and Holm (2009) distinguish between people’s needs and wishes for AT, pointing out that respecting the principle of justice requires that the needs of the individual be balanced with those of the wider community. The principle of justice can also be considered in relation to carers in that the question of fairness arises in decisions linked to the distribution of burden (or stated more positively the responsibility for care) between the State and informal carers (Kubitschke et al., 2009).
A feminist perspective on justice highlights the importance of relationships and care and in particular the need to ensure fairness/equality between men and women. If responsibility for care is given to family carers, this often means that it is given to women who are simply expected to provide such care and often cost free. In the ENABLE project, particular attention was paid to issues surrounding the recognition, value and rights of carers (most of whom were women) as well as to the involvement of paid homecare workers who also tend to be women and are often low paid and have low levels of education (ENABLE, 2004).
Solidarity and dependency
Dependency is often perceived as being linked to stages or particular situations in a person’s life such as infancy, disability, illness and old age but in fact people are all dependent on each other in numerous ways throughout the whole course of their lives (e.g. for food, clothing and services but also for more emotional, social and psychological needs). Agich (2003) suggests that as dependency is not limited to old age and frailty, it should not be expressed as a consequence of such. Rather dependency experienced by some but not all elderly people (or in this case, by particular people with dementia) should be considered as the unique way that it is manifested and experienced by the people concerned.
Interdependence involves mutual and physical responsibility to others and the sharing of a common set of principles, which is often linked to devotion to one’s family or community. Such a response can be described as solidarity. The principle of solidarity is closely linked to that of justice/equity as it covers the issue of cooperation between people. It recognises that some groups of people are vulnerable and may need support i.e. they may be dependent on others for their physical, emotional or practical needs. In some cases, solidarity (especially in connection to social and healthcare) is organised officially by the State and may take the form of obligatory social charges or healthcare fund contributions.
Such interdependency has been described as being based on social contracts between “rough equals” but this has been criticized due to its emphasis on reciprocal bargaining and self-regarding interests. Nussbaum (2001), for example, draws attention to asymmetrical forms of dependency (e.g. linked to the care of infants, extremely old people and people with severe illnesses or long-term severe disability) and points out that certain groups (often those who are most vulnerable) are excluded from this bargaining process.
Silvers and Francis (2005) take a different approach to understanding interdependence and solidarity. They emphasise the importance of trust and believe that “mutual comprehension can be induced by shared feelings or by common reasons” and that this does not always have to necessitate negotiation. They also suggest that self-interest (e.g. in providing for one’s own possible future needs) may contribute towards acts of solidarity.
Whether solidarity is based on self-interests or other-interests, measures should be taken to ensure that vulnerable groups are involved to the greatest extent possible in the kind of support provided and the way that it can be implemented.
Parentalism and paternalism
Being dependent on others to make decisions on one’s behalf due to various forms of incapacity sometimes results in paternalistic attitudes or behaviour (e.g. reflecting the presumption that “we know what is best for you”), resulting in a person being treated as a child and their autonomy not respected.
However, Landau et al. (2010) suggest that fears of paternalism may lead to some professionals erring on the side of autonomy at the expense of advising patients about particular courses of action.
Hertogh (2010) states that 20 years of empirical research in ethics has shown that the move from paternalism to autonomy might have gone too far. He reports widespread support for the more realistic strategy of shared decision-making, involving people with dementia, their carers and healthcare professionals in a collaborative effort to define mutually acceptable goals of care. This strategy acknowledges that our autonomy is always relational and embedded in a web of mutual interdependencies, which has implications for the issue of consent. This does not, however, reduce the need to always seek the consent or assent of the person with dementia.
Recognising that a person may nevertheless have difficulties making decisions but also have a right to lead an autonomous life insofar as this is possible, some authors prefer to use the term “parentalism”, not as a means to avoid sexist terminology, but rather to emphasise the aspect of parenting which coordinates assistance and the encouragement of whatever level of self-expression or autonomy is possible for the individual. This has been described as a “situation in which an affectively concerned caregiver strives to enhance the wellbeing, including the autonomy, of another dependent individual” (Agich, 2003, p.48). Agich (2003) describes parentalism as something that is rooted in the basic response to the needy other that relationships based on the interconnectedness of all human beings engenders. As such it is very much linked to the concept of interdependency.
Vulnerability is a term often used when referring to specific groups of people who, for a variety of reasons, need extra care or support (e.g. infants, pregnant women, disabled people and people with dementia). However, Rendtorff and Kemp (2000) draw attention to the temporal and finite quality of all human life which indicates that the human condition is fragile. R.D. Laing described this with a touch more humour, stating, “Life is a sexually transmitted disease and the fatality rate is one hundred percent.” Acceptance of the vulnerability of humans is therefore essential for the development of moral behaviour towards other humans, for providing support and care when needed, and expressing empathy towards them.
Quality of life
Some ethical principles are closely linked to quality of life. In their assessment of the extent to which technical support might contribute towards the quality of life of people with dementia, Heeg et al. (2005) therefore also assessed the extent to which various devices and systems affected autonomy, safety, privacy and dignity amongst other criteria. Beauchamp and Childress (2001) point out that the “best interests” standard frequently used when making decisions about beneficence and maleficence is inescapably a quality of life criterion. They also suggest that quality of life considerations should be based on whether a particular intervention is beneficial to the person concerned rather than whether that person’s life is beneficial to him/her. They were referring to medical interventions but this could equally apply to decisions about the use of AT.
A framework was recently developed by Banerjee et al. (2010) for the systematic assessment of the quality of life impacts of services and policies for people with dementia and their informal carers based on a series of six structured discussions with professionals, people with dementia and carers attending international dementia conferences. Whilst the findings cannot be generalised, this study provides some insight into what people might mean by quality of life in the context of services for people with dementia.
312 individual contributions of text were analysed using qualitative thematic analysis. Of the ten most commonly used words, the highest score was for choice (mentioned 145 times) followed by time (139), love (120), spirituality (80), communication (69), education (54), respect (53), safety (49), touch (43) and fun (43). The analysis of the data resulted in the emergence of 8 domains. The one which represented the largest number of chunks of coded text was “choice and personhood” (including empowerment, respect, identity and spirituality), issues which are related to some of the ethical principles which have been discussed in this section.
Baldwin (2008) nevertheless criticizes Beauchamp and Childress’s approach (which he classes as “principlism”) for failing to acknowledge personhood and for its focus on decision-making. In addition, Petrini and Gainotti (2008) highlight the lack of information about what precisely is “good” and “just”. Drawing on the work of Buber (1970), Levinas (1961) and Schotsmans (1999), Baldwin (2008) proposes “personalism” as an ethical framework, which focuses on “the uniqueness of each person, the relational and intersubjective nature of persons and the notion of participation in the wider society through communication and solidarity” (Baldwin, 2008, p. 107). The primary ethical principle of personalism is perhaps that all human beings deserve respect but personalism also requires positive attitudes in addition to the simple passive avoidance of negative actions and behaviour (Petrini and Gainotti, 2008).
Relationships must be taken into consideration when taking ethical decisions regarding the use of AT for people with dementia, particularly when AT is being implemented in the home as this may be the home of several people. Consequently, the privacy, dignity, autonomy and possible consequences for everyone concerned are of importance and everyone’s consent should be obtained. Where transformations of the home are necessary, it could also be the case that the home belongs to other members of the household and not to the person with dementia.
Often the use of AT is dependent on the cooperation of other people so if they are not happy about its use, it will often not be used. The issue concerning control of the AT (i.e. who can disable or switch it off) may also affect and even disrupt existing power relations between members of a household.
There is a close relationship between ethics and legislation in that ethical principles underlie many laws and in addition, laws may be passed in various domains to ensure that various ethical principles are respected. On the other hand, there is sometimes a difference in time between acceptance of what is acceptable or desired in a specific situation or domain and there being a law to ensure that this happens.
Various ethical principles can be found in the constitutions of several countries as well as in other national laws, and a few European and international conventions such as the United National Universal Declaration of Human Rights, the European Convention on Human Rights and the European Convention on Human Rights and Biomedicine. Please see Annex 1 for a few examples. The main principles of relevance to the use of AT in the above-mentioned conventions are dignity, privacy, liberty, self-determination and non-discrimination. The Convention on Human Rights and Biomedicine addresses in detail the issue of consent in the case of people lacking capacity. The various issues covered can also be considered as being linked to the ethical principles of beneficence, maleficence and autonomy.
Privacy and dignity
In the American legal system, the concept of privacy has been defined as “the right to be let alone” with further categorisation relating to physical privacy, informational privacy and decisional privacy (Bharucha et al., 2006). The European data protection directive is very much concerned with confidentiality and respecting privacy but seems to focus on informational privacy. In national conventions and certain European conventions, dignity mainly takes on the form of respect for and lack of interference in private and family life.
Privacy and dignity are also mentioned in some charters which are influential at national level and whilst not actually laws, they may have a considerable impact on the provision of health or care services. For example, dignity and privacy are two of the six key principles outlined in Scotland’s National Care Standards (the others being choice, safety, realising potential, and equality and diversity. A care commission was set up in April 2002 under the Regulation of Care (Scotland) Act 2001 to regulate all adult, child and independent healthcare services in Scotland and it is the duty of the care commission to ensure that all care service providers meet the standards set by the Scottish government (Care Information Scotland, 2010).
Similarly, in Germany there is a Charter of Rights for people in need of long-term care and assistance which was published by the German Federal Ministry of Family Affairs, Senior Citizens, Family and Youth in 2007. In the preamble, reference is made to the unqualified entitlement to respect for the dignity and uniqueness of all human beings and the special responsibility of the state and society to protect the human dignity of those in need of long-term care and assistance.
Data Protection Laws
An issue which frequently arises in connection with the use of surveillance and monitoring devices and systems is data protection. In 1995 the Data Protection Directive (Directive 95/46/EC on the protection of individuals with regard to the processing of personal data and on the free movement of such data) was implemented by the European Commission. Whilst it was not legally binding for citizens, it obliged Member States of the European Union to enact their own data protection laws. According to the Justice and Home Affairs’ website of the European Union, all Member States have done so, as well as Liechtenstein and Norway (information is missing for Iceland and Switzerland) (please see: http://ec.europa.eu/justice_home/fsj/privacy/law/implementation_en.htm#belgium).
The directive covers the processing of personal data by automated or manual means. Personal data is understood as meaning any information relating to an identified or identifiable natural person. In the context of AT, this might include written records or summaries of a person’s movements linked to their name, address, medical condition and prognosis etc. The situation with regard to visual information is quite complicated. We did not find a European resolution or regulation etc. which explicitly claimed that one's image is personal data. However, the Hungarian Data Protection law explicitly states that a person’s image is personal data. Moreover, in the definition of personal data (official directive 95/46/EC on the protection of individuals with regard to the processing of personal data and on the free movement of such data) the keyword is identifying (and identified, identifiable etc.). From a good quality video recording anybody can be identified. Hungarian data protection experts thus they had no doubt about this being personal data. Also some guidelines of the European Data Protection Supervisor suggest the same when promoting data protection principles for CCTV (closed-circuit television) devices. Based on the findings of a number of German studies, there seem to be two positions. The first considers that any measure of personal data - even if it is only live video surveillance - involves handling personal data. Therefore it is an intrusion into a person’s privacy and consequently, has to be in line with constitutional principles and legal documents. The second takes the stance that handling personal data only starts when live video surveillance is accompanied by other actions, such as storage. We therefore conclude that video recording can be considered as involving the handling of person data but that there may be differences between countries with regard to live video recordings (Kapronczay, 2010).
Indeed, the purpose of data protection is to protect people’s right to privacy. Thus, even if according to the law of a given country live video recordings are not considered as the handling of personal data, they are nevertheless an intrusion into people’s privacy. Consequently, alternative solutions should be sought and the wishes of the person with dementia certainly taken into account.
Under the European Directive, three main conditions must be met if any form of personal data is to be processed, namely transparency, legitimate purpose and proportionality. Transparency means that the person whose personal data is being processed is aware of this and has given consent. The person who is controlling the data must have given his/her name and address and stated why s/he is processing the data. Legitimate purpose means that the data must have been processed for specific and legitimate purposes. It cannot be further processed in ways that are incompatible with those for which it was initially collected (e.g. used to plan better care but later disclosed to commercial AT providers). Finally, the principle of proportionality means that the processing of personal data must not be disproportionate to the need. It must also be relevant and adequate. For example, 24-hour video surveillance and recording of a person’s every movement to determine whether s/he takes his/her medication at the right time would not be proportionate to need as another method could be devised to ensure the timely taking of medication.
In some countries people with disabilities have certain rights which might include access to or assistance financing AT. The United Nations Convention on the Rights of Persons with Disabilities and its Optional Protocol, which came into force in 2008, has been signed by all member states of the European Union as well as Iceland, Norway and Turkey and ratified by 16 member states as well as Turkey. However, dementia is not always officially recognised as being a disability with the result that laws and regulations governing access rights are open to interpretation. On the other hand, in some countries, dementia (or more specifically, Alzheimer’s disease) is legally recognised as a disability, thereby facilitating access for people with dementia to appropriate support, which might include AT. Alzheimer Europe asked legal experts in some of its member associations whether dementia or Alzheimer’s disease was legally defined as a disability in their countries. The following responses were received.
To the best of our knowledge, nothing at federal level.
The Law on Public Assistance
Considered as illnesses which in time can result in legal disability
Order No. 90 of 9 August 2002
Dementia is legally defined as a mental disorder under the Adults with Incapacity (Scotland) Act 2000 and the Mental Health (Care and Treatment) (Scotland) Act 2003. Mental disorder is legally defined as a disability.
Table 1: Responses from legal experts concerning legal definition of dementia as a disability
Nevertheless, official recognition of dementia or Alzheimer’s disease as a disability does not always ensure access to services and support (and vice versa).
In Finland, for example, dementia is mentioned in some government proposals such as the Act on Continuing Powers of Attorney but the fact that it is not mentioned in the Disability Act, which is interpreted as applying only to physical disabilities, means that people with dementia are not entitled to disability benefits. This is further complicated by the tendency, not just in Finland, to consider dementia as being part of “normal ageing” (Mäki-Petäjä, 2010).
In Romania, on the other hand, dementia and Alzheimer’s disease are legally defined as disabilities under Order No. 90 of the 9 August 2002 which would normally make people with dementia, or more specifically with Alzheimer’s disease, eligible for certain benefits but as methodological norms have not yet been developed, such rights are not necessarily translated into practice (Dobranici, 2010).
Finally, in Poland, whilst dementia or Alzheimer’s disease are not officially recognised as a disability, they would be considered as disabilities under The Charter of Rights of Persons with Disabilities (Resolution of the Polish Seym /Parliament of 1 August 1997) where people with disabilities are defined as “those whose physical, mental and intellectual abilities, permanently or periodically, make it difficult or impossible for them to run everyday activities, to study or work as well as to fulfil social roles, in accordance with legal and customary norms.”
 We are using “video recording” as a general term to cover any type of recording of a person’s image regardless of whether the recorded image is stored, live, digital, on a film reel, with or without sound etc.
 Michael Dorderer: Verfasungsfragen der „Sicherheit durch Null-Toleranz”, NVwZ. 2001/2., 131
 Königshofen, Neue datenshutzrechtliche Regelungen zur Videoüberwachung, RDV, 2001/5., 222
Last Updated: Monday 23 April 2012