German Ethics Council: the self-determination of people with dementia must be allowed for and preserved

Some 1.2 million people with moderate to severe dementia are currently living in Germany. In view of the growing number of affected persons, dementia is one of the principal health-related challenges of our time, in terms not only of health and social policy, but also of our conception of ourselves as human beings and citizens.

Self-determination is an essential aspect of humanity’s understanding of itself and a particular focus of all ethical discourse. Attention has hitherto centred almost exclusively on the deficiencies associated with dementia. If human individuals are equated with their intellectual faculties, dementia will inevitably be seen as involving the destruction of their humanity. If, however, they are regarded not only as thinking but also as feeling, emotional and social beings, it will be easier to allow for the resources that still exist in each affected person. This approach underlies the German Ethics Council’s Opinion, which is concerned to show that people with dementia too retain elements of self-determination that should be observed and supported.

Both research in and the practice of medicine and nursing are predominantly directed towards early diagnosis and symptomatic relief, less attention being devoted to the long-term progress of the disorder and the ongoing care for which it calls. At present the condition can only be delayed, but not permanently held in check, so that persons with dementia are confronted with progressively declining autonomy and an increasing need for help. Precisely in this situation, allowing scope for the exercise of whatever degree of self-determination is still possible is positively demanded by the respect we owe to every individual. It is therefore all the more important to discover and facilitate the perception and promotion of, and respect for, the remaining self-determination of people with dementia. This calls for a posture of attentiveness that is based on the concrete needs of the affected person and reflects the approach of “assisted self-determination”.

The German Ethics Council notes that the principles of attentive treatment of people with dementia whereby their self-determination is supported for as long as possible are observed with great commitment in many families and care homes. The caring family members and professional nursing staff without whose ongoing dedication the current level of care could not be maintained deserve all possible recognition and support. However, great efforts are called for on the part of society as a whole if the care of people with dementia is still to be guaranteed in the future. To this end the German Ethics Council has drawn up a total of 16 recommendations, the most important of which are outlined below.

    The German Ethics Council supports the Federal Government’s aim of developing a National Action Plan for dementia with a view to coordinating the work of all actors involved so as to achieve nationwide improvement of the medical, nursing and social care of people with dementia. This will also help to strengthen the social inclusion of people with dementia and to acknowledge their entitlement to self-determination.
    The concept of long-term care needs should be reviewed to take adequate account of the self-determination potential of persons with dementia and the resulting nursing tasks.
    The work of caring family members requires effective support and financial recognition. Consideration should be given to seeking the help of people familiar with caring in the home environment to nurse a person with dementia in hospital too.
    Greater financial support should be given to outpatient communal housing and residential communities for persons with dementia. These include in particular assisted living communities close to the homes of those concerned, offering an environment permitting self-determination in which professional nursing staff and family members work together.
    Fundamental research in the field of dementia should be assisted mainly in the form of translational research directed towards clinical applications. The support given should also extend to research on the aspects of clinical medicine and nursing science, psychosocial issues and accompanying ethico-legal research and research on care provision.
    To preserve and protect the self-determination potential of persons with dementia, the principles of the UN Convention on the Rights of Persons with Disabilities, which extend equally to people with dementia, should be consistently applied.
    The willingness of family members to undertake voluntary care should be reinforced by practical support in the process of care and by societal recognition.
    In evaluation of the applicability of an advance directive, expressions of the will to live by a patient who lacks decision-making capacity should be taken into account. In cases where the presence of decision-making competence cannot be reliably ruled out, life-affirming utterances should always take priority over statements to the contrary in an advance directive owing to the irreversibility of abstaining from life-preserving measures.

In a dissenting position statement, Council member Volker Gerhardt expressed misgivings on two aspects. The first concerns the irrevocable loss of personality that accompanies the increasing decline in self-determination – a factor that must on no account be minimized. The second is the question of a wish to commit suicide, which is particularly relevant in dementia in view of the problems of self-determination.

The Opinion can be accessed (in German) at www.ethikrat.org. An English version will be available in due course.