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A discussion on ethical principles on personal identity

2009: Advance directives and personhood

Two key questions with regard to personal identity and advance directives are:

  • Is the person who writes an advance directive necessarily the same person as the one to whom it will apply later (in the case of advanced dementia)?
  • Should previously expressed wishes (i.e. in an advance directive) take precedence over currently expressed wishes (by a person with incapacity)?

Clearly, advance directives may be made by people from all walks of life, who would perhaps give very different answers to these questions. Laypeople’s views about personhood differ. Sapp (1998), for example, argues that if a person:

were to retain bodily integrity and vitality but to lose consciousness, rationality and the capacity to make autonomous choices, most people would simply take the commonsense position that of course this is still a human being even if some or even most of these capacities have been lost.”

Luis Bunuel, the filmmaker, on the other hand, is quoted as having said,

You have to begin to lose your memory, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all…..Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.” (Sacks, 1986, p.34)

Whilst Alzheimer Europe does not take a stance on the first question, it does object to any attempt to classify people with dementia at any stage of the disease as anything other than full human beings entitled to the same amount of consideration and respect as any other group of people. Post describes personhood as being more complex than just a baseline of self-awareness and cognition - a claim which would surely be backed up by authors such as Killick, Barnett, Ignatieff and Goldsmith who all indicate that even people with severe dementia have awareness and a voice which can be heard if one listens to it (Cox, 2003). In any case, irrespective of whether one accepts that the person with advanced dementia is the same person as the author of the advance directive, we can see no justification for showing any less respect to any person on the grounds that they are suffering from severe incapacitation or cognitive damage.

Nys (1997) points out that from a legal point of view what is important is that the person who writes an advance directive has reflected on the issue of continuity or discontinuity. This would imply that they were aware of how the disease might progress and what the consequences might be on their awareness and personal identity.

Regarding the second question, if advance directives are to be taken seriously and serve as a means to exercise one’s autonomy at a time in the future when it would otherwise be no longer possible, then people should be able to count on their wishes being respected. People should be aware when writing them that they may change in the course of the disease so that they are sure that they really want to make binding decisions and/or whether they wouldn’t prefer to appoint a proxy. Ideally, having considered this issue, a person could record in the advance directive what should be done in case of conflict between past competent wishes and current incompetent wishes e.g. to respect the advance directive, ask for the opinion of a medical expert or speak to the proxy etc.

In the absence of such a statement, we do not consider that any person should be subjected to medical treatment or suffer from a lack of medical treatment on the basis of a prior decision when it is clear that they are currently displaying clear signs of wishes to the contrary. In such cases, medical staff should be able to act humanely and according to the principles of beneficence and non-maleficence.



Last Updated: Friday 09 October 2009


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the German Ministry of Health for the implementation of the Dementia Ethics Network.
  • Bundesministerium für Gesundheit