The Ethical Context of Dementia Care
Health and social care services exist to provide support for people who need, or are perceived to need, special support in order to maintain or develop their socially valued potentials. Services may provide assistance in a variety of ways, from day to day physical care and medical treatments, through training and support in social and life skills, to environmental and psychological support.
Since the early 1980's there has been a growing interest in clarifying underlying values of care work. (Seedhouse 1988, Timms 1989) Common 'value talk' in the care professions centres on notions of independence, enabling, empowerment and self-determination. Within dementia care there has been a concerted effort to establish a 'person centred’ approach to care. (Kitwood, 1997) From this general perspective the individuals are perceived to be both unique, in the sense of having the capacity to make personal judgements and develop personal potentials, and social beings, in that judgements and potentials are linked to social circumstances.
For many people it is the capacity to exercise control over one's own life - the capacity to be autonomous - which makes life valuable. It follows that supporting a person to enable them to maximise this potential is at the heart of all care work. Dementia reduces the individual’s ability to be autonomous in daily life because it interferes with intellectual and physical capacities. The person with dementia, like every one of us, exists within a framework of complex social, intellectual, environmental and biological relations, some of which are dysfunctional. The goal of dementia care interventions is to stabilise, reduce, or eradicate these dysfunctions in order to enable the recipient of care to maximise their own human, social and biological potentials.
Adults with dementia, by the very nature of their condition, have limited reasoning capacity and to emphasise autonomy as the central consideration in this area may seem contradictory. Yet it is precisely this perceived lack of autonomy that makes the issue of 'person centred' care all the more important. Failing to recognise an individual’s capacity to be autonomous is to deny them their ethical status as a person of value. To provide care without attention to autonomy is to engage in a dehumanising denial of the essential attributes of a morally valuable person.
The concept of person centred care brings with it the notion of the presence of at least some degree of independence in individual decision making. This capacity to operate independently is called autonomy. To be autonomous is to have the capacity to think, decide and act independently. Autonomy is not a fixed or accurately measurable capacity, it is a contextually dependent quality of an individual life. At certain times and in certain contexts, we may be more or less autonomous depending on our psychological, social or physical circumstances. To be autonomous, in this sense, is to have the capacity to make recognisably personal decisions and judgements.
People with dementia have psychological and perhaps physical barriers to their capacity to be autonomous. It is impact of these barriers on autonomy that dementia care aims to reduce. Being autonomous is not simply a matter of making choices. It also involves some capacity for personal reflection and deliberation as well some ability to alter personal preferences to make them more effective in action. In practice, the person with dementia should be regarded as autonomous in that they have some capacity to deliberate on the implications of choices available to them. Physical or environmental restrictions can impede the expression of autonomy and many people in care are restricted in expressing their autonomy by the very same care interventions and conditions that are supposed to maintain and enhance their autonomy. The duty of carers and professionals is to respect autonomy even when the mental and physical barriers present in dementia limit it. This involves making judgements about autonomy and reviewing interventions in the light of their influence on autonomy. Judgements about the presence of actual or potential autonomy present in a person’s life are necessarily subjective and qualitative. Each of us will interpret reasoning, decision making and actions differently. As carers, our duty to respect autonomy in others will depend on personal reflection of contextually relevant factors such as judgements on the quality of reasoning, information available etc.
The degree to which a person’s capacity for autonomy is exercised is dependent on, amongst other things, their capacity to understand and consider the factors operating in a given circumstance, and the restrictions imposed on them by external forces. Their capacity to be autonomous may also be impeded because of lack of knowledge about a given situation, or because of personal intellectual limitations. In many cases, information or education will help to reduce these barriers. In some cases physical or mental impairments are fixed and these limit some opportunities for autonomy. The person with dementia has some degree of cognitive impairment that interferes with thinking and decision making. This is not to say that the person with dementia ceases to have any capacity for autonomy. Dementia is often of slow onset and for many sufferers cognitive abilities fluctuate over time. Although some cognitive capacities may be permanently lost, there is usually some residual capacity for autonomy, or control over one’s life, even in the later stages of dementia.
Intellectual Capacity, Rationality and Autonomy
In order to make choices it is essential to have some sense of self, even if this is just to discriminate between oneself and other objects. A sense of self develops from a capacity to respond to external or internal stimuli. Within our society we place strong emphasis on intellectual ability. Those of us who are born with or acquire some degree of intellectual impairment may well have reduced reasoning capacity but this is not necessarily a reduced capacity for autonomy. The ability to think and reason in ‘rational’ ways is considered virtuous within western society. From this point of view the validity of decision making depends on the logical thinking. While logic is undeniably valuable in reasoning, it does not guarantee a quality outcome. Even the most intellectually capable individuals may fail to exercise their capacity for autonomy in some contexts. Some degree of intellectual ability and rationality is necessary for autonomy but greater intellectual or rational ability does not guarantee superior judgement or maximal utilisation of autonomous capacity. The duty to respect autonomy is not dependent on intellect or rationality although these attributes will generally improve a person’s ability to be autonomous. We should, initially at least, judge the person’s capacity to make independent choices rather than make judgements about the quality of those choices. In other words respecting autonomy is about respecting capcity to choose rather than respecting choices. How far we have a duty to respect expressed choices will depend, to some extent, on their likely outcome for the person and others.
A Challenge to Autonomy
The moral argument so far has been supported by the intuitive theories of client centred care. The challenge to this view comes from an older tradition, the paternalist approach to care, which has generally supported the setting up and operation of large scale institutions and the restriction of autonomy for people in need of care. Its philosophical foundations have their origins in the argument that the moral value of a choice is dependent on the degree to which it is the result of relatively high levels of cognitive function and rational deliberation. According to this view only fully rational beings can be autonomous and are therefore worthy of respect.
The proponents of paternalism argue that the choices of some special groups of people should not be considered to be autonomous because the people are incapable of rational thought. Members of social groups such as young children, people with dementia or mental health conditions are considered insufficiently rational to warrant respect as person’s in their own right. Decisions are made for them without regard to their individual needs and preferences. The argument for paternalism is founded upon two false assumptions. (1) that autonomy is an objectively measurable quality of a person, and (2) that it is a largely fixed attribute of a person dependent on a relatively high level of intellect or rationality. The first assumption implies that autonomous people always act autonomously, or at least, are capable of acting autonomously at all times. The second assumption fails to take into account the complexity of thinking and reason. Since our ability to think and reason varies according to a wide range of factors such as education, personality, motivation and availability of information, it follows that our capacity for autonomy will also fluctuate. To view autonomy as measurable and fixed requires us to create arbitrary divisions between people based on assumptions of intellectual capacity. Intellect, rationality and autonomy are, to some extent, co dependent. However, each quality is also variable in different contexts and at different times.
It is self evident that greater intellectual capacity, rationality or logic do not always result in better decisions, nor does they necessarily guarantee that decisions are made independently. The view that autonomy requires a high level of intellectual fails to recognise the contextually relative nature of autonomy. People with dementia have varying degrees of intellectual limitation and to some extent this must limit their capacity to make rational decisions but this is not sufficient to justify failing to respect the autonomous capacity that is available.
A person must, by definition, be an individual and it is an individual’s capacity to be autonomous that is valuable and worthy of respect. By requiring an arbitrarily set level of intellectual ability the paternalist fails to recognise what is valuable in human life.
A Duty to Respect Autonomy
Autonomy may be viewed as the capacity to think, decide and act independently. It may also be considered as a principle to respect in that the capacity to be autonomous itself is worthy of respect. Clearly if we are to value individuals as persons in their own right we must recognise and respect their capacity to be autonomous. Therefore we have an ethical obligation, or duty, to respect the autonomy of persons in our care. Respect in this sense does not mean to agree with or comply with the wishes of those in care but simply to acknowledge and give due consideration to the capacity for autonomy in others. The duty to respect autonomy entails an obligation to value the capacity of persons to make autonomous choices. It also entails an obligation to act.
"The first sort of act it obliges is a negative one, that of refraining from controlling, coercing, or interfering with the autonomous acts and choices of other persons." (Keyserlingk 1993 p398)
But it also entails a duty to positive action. It implies an obligation to facilitate or foster autonomous decision making by, for example providing information, resources or guidance. Facilitating autonomy will involve removing obstacles and creating the conditions necessary to support autonomy. (Keyserlingk 1993) A social expectation to facilitate autonomy falls on occupational groups who work to support and promote personal growth such as teachers, social and health care workers by definition of their social role. To provide care without acknowledging the central importance of autonomy is to devalue, and inhibit the growth and potential of those for whom we are responsible.
An Algorithm for Ethical Decision Making in Dementia Care
An algorithm is a step by step guide intended to help us deal with complex processes or decisions. The ethical algorithm set out below is based on the principle of respect for autonomy and provides a step by step guide to support day to day ethical decision making in dementia care. The algorithm is both philosophically sound and practically useful. The diagram below sets out the main features of autonomy and provides a guide for assessing and respecting autonomy in practical situations.
Assessing and Respecting Autonomy
Phase One Thinking and reflecting |
Phase Two Deciding |
Phase Three Acting |
|
Is the decision consistent with the information available? Have other options been considered? What is the probability of achieving desired outcomes by acting on the preferred choice? |
What is the likely impact on the future autonomous capacity of the individual? Will acting in this way enhance or impair future autonomous capacities? What is the likely impact on the autonomous capacity of others? |
Autonomy is a subjective, qualitative characteristic that exists as a capacity of each 'person'. It is measurable, only in the very broadest sense, in terms of our subjective judgements about each choice and action. Consideration of the trigger questions in the diagram above will help in this process but it is important to remember that it is a qualitative not a quantitative judgement which is being made here. In order to assess autonomy we need to consider a variety of factors that have an impact on the degree to which the person with dementia is able to maximise her autonomy. We need to use our own general and specialist knowledge, skills and personal attributes to help us determine the extent to which the person’s decisions are autonomous.
The value of making an assessment during phase one and two of the algorithm is not only that it indicates the degree of autonomy present but it also helps us to determine how we can to respect autonomy. It is also the first step in clarifying how the capacity to be autonomous may be nurtured amongst those for whom we are responsible.
Step 2: Evaluate Possible Actions
Two general issues need to be considered at this point. Each 'person' in a relationship has some capacity to be autonomous. This implies the existence of a conflict of individual autonomies. Between the person with dementia and the carer for example. Resolution of this conflict can only be achieved by personal reflection and deliberation but some basic principles can be utilised to help in this process.
1.Impact on Future Autonomy
Acting autonomously should not decrease the future autonomous potentials for an individual. (Seedhouse, 1986)
The degree to which individual autonomy should be respected, or to which a given act may legitimately facilitate autonomy, may depend on the impact of the proposed action on longer-term capacity for autonomy. According to this principle respect for individual autonomy will be balanced by consideration of the potential impact on an individual’s future autonomous capacity. This principle recognises that to respect autonomy it is not enough just to agree with or remain neutral when a choice is made. It reminds us that the responsibility to respect autonomy is a reflective and interactive process and stresses the need to consider the individual’s future capacity for autonomy.
2. Impact on the Autonomy of Others
Acting autonomously should not decrease the autonomous potentials of other individuals. (Seedhouse, 1986)
This principle stresses our responsibility to respect the autonomy of all 'persons' equally and again emphasises the reflective nature of autonomy. The principle draws on the notion of a social responsibility to consider the interests of others. It provides a reminder that existence of autonomy is not a licence to act according to personal preference regardless of the interests of others. The recognition that autonomy is a reflective quality is an acknowledgement of the essentially social circumstances of the human experience. Humans are not simply independent agents, they are also members of and participants in a moral and social community. The recognition of the autonomous capacity and moral value of others is crucial to care work.
The Limits of the Ethical Algorithm
The algorithm is intended to give practical guidance to dementia care workers regarding the moral considerations of day to day care work. It is not a prescription for ethical care work but it is an ethically sound aid to decision making in day to day practice. Any attempt to prescribe in detail the actions which are to be undertaken by carers and care professionals would itself be ethically suspect. It would run the risk of undermining the capacity of others to express their own autonomous decisions. The algorithm should be used to ensure that the central ethical issues are addressed when decisions need to be made by carers and care workers regarding proposed care interventions.
The algorithm can help us to decide whether general or specific care practices are ethically sound. What it can not do is make the decisions for us. Each of us has the capacity to be autonomous and, consequentially, we retain personal moral responsibility for the outcomes of our own actions. The decisions that we make may also vary according to our personal evaluation of the moral significance of the situation. Emphasising autonomy, or following the steps set out in the framework, will not always lead us to the same conclusions. Autonomy enables and good practice demands personal reflection from carers and care professionals.
A common understanding of the fundamental importance of autonomy in every day ethics helps to give an overall consistency to moral decisions. The recognition of autonomy as a reflective concept allows for the development of a non-prescriptive and liberating framework within which carer and professionals can operate with moral integrity.
Applying the Algorithm to Decisions About the Use of Technology in Dementia Care
The application of ‘new’ technologies in care settings is applauded by some and rejected by others. It is important to recognise that technological devices and systems, like other objects, have no intrinsic moral value. Their moral significance arises from the way that they are used. Proposals to apply technological solutions in dementia care must be subject to a thorough ethical examination. Not because they are ethically suspect but simply because all care interventions require constant appraisal against ethical principles. For example, if an electronic monitoring device offers an effective method of coping with ‘wandering’ we must not allow our enthusiasm for technology to allow us to overlook the importance of respecting the autonomy of the person in our care. Whether we use locked doors, provide intensive chaperoning or use electronic monitors we must be sure that if we restrict immediate autonomy there are ethically justifiable reasons for doing so. The algorithm can help us to ensure that we make decisions based on our principle duty to respect autonomy.
An example
Lifestyle monitoring systems are available that can record information about daily activities and movements around a home. The data collected can be stored by a computer and used to activate alarm systems at a call centre. Closed circuit TV systems can be used to provide care services with opportunities to view the condition of the person with dementia from a call centre. Electronic tags can be used to activate an alarm if the person with dementia ‘wanders’ outside of a pre set ‘safe area’.
It is important to remember that these systems and devices are ethically neutral until they are applied in a human context. All of these devices can be used intrusively and can restrict autonomy or they can be used to enhance autonomy. What is needed is a thorough examination of the proposed uses of the technologies with regard to the person with dementia. The algorithm will help with this process.
There are two basic approaches to ethical questions
If, for example, a residential home owner wanted all residents to wear an electronic tag to make management of ‘ wandering’ easier for staff this is likely to be ethically suspect. This decision suggests that the primary motive for using electronic tagging is the benefit for the institution and its staff. The interests of individuals resident in the home are being disregarded. This home owner is failing to respect autonomy.
However if a home owner considers using an electronic tag to provide vulnerable residents with more freedom to walk around the grounds of the home in safety, and the owner has examined the needs of each person with integrity. Then this decision is more likely to be ethically justifiable. The primary motivation is to facilitate autonomy and the action is proposed because it can benefit the person with dementia.
Other Issues in the use of assistive technology and telematics
Sometimes the information and communication potentials of ‘new’ technologies seem so overwhelming that we may be inclined to use them to replace human services. This may be particularly attractive to formal care agencies, particularly where there seem to be cost benefits arising from the introduction of technological solutions. There are important practical reasons to retain high levels of human interaction in care services. Humans are social beings and we are psychologically dependent on human contact. A reduction in human social contact very often leads to psychological dysfunction within a relatively short period of time. Blanket replacement of human services is likely to make psychological problems more apparent amongst dependent people. The real value of technology lies not in its ability replace human contact but in its potential to enhance the human experience.
There also some practical considerations that we need to take into account with regard to assistive technologies. Technologies are usually developed for a broad commercial purpose. Their usefulness in individual circumstances is dependent on the needs and preferences of the person they are intended to assist. This is not just an ethical point. The technology has to be of practical value, usable, reliable, cost effective and offer the best available care option for the service user. Telematic solutions need to be reliable, accessible, cost effective and regularly maintained in order for them to enhance existing face to face services.
Some basic principles for using technology in care settings are set out below.
Basic Principles for Using Assistive Technologies and Telematics in Dementia Care.