Background

The present paper constitutes the input of Alzheimer Europe and its member organisations to the ongoing discussions within Europe about advance directives (in the context of Alzheimer’s disease and other forms of dementia). It is the result of discussions carried out in a multidisciplinary group, comprising experts in the field of psychiatry, neurology, pharmacology, psychology, law and ethics, in collaboration with the Board of Alzheimer Europe and its member associations.

Alzheimer Europe’s position on advance directives was guided by several general principles and was influenced by principles contained in pre-existing European or international documents.

Executive summary

On the basis of aforementioned principles and of a review of current literature concerning issues linked to the use of advance directives, Alzheimer Europe has developed the following position with regard to advance directives:

  1. Alzheimer Europe would like to promote the use of advance directives for decisions covering a wide range of health related issues e.g. treatment, care, welfare, research, the appointment of health care proxies etc.
  2. Alzheimer Europe supports the concept of health care proxies and encourages governments to legally recognise their role and also to develop the relevant safeguards for their involvement in the decision-making process.
  3. Alzheimer Europe would like to emphasise the importance of involving doctors and other qualified health care professionals when considering whether/how to draw up an advance directive within the context of advance care planning.
  4. Due to difficulties in obtaining an appropriate level of precision (which is neither too vague nor too specific to be of practical use), Alzheimer Europe encourages people to write statements of values.
  5. Alzheimer Europe expects governments to set up appropriate systems for the registration, use and review of advance directives.
  6. Alzheimer Europe is of the opinion that for an advance directive to be valid, certain generally accepted criteria should be fulfilled e.g. that the person has the necessary and relevant capacity, is free from undue pressure, has not made a more recent version and has stated wishes that are applicable to the current situation/proposed treatment.
  7. With regard to debates surrounding the issue of current versus formerly expressed wishes, Alzheimer Europe insists on the importance of always trying to ascertain the wishes of patients even if they have written an advance directive. If the person is fully competent, doctors should not follow instructions/wishes expressed in the advance directive. If the person is not fully competent and there appears to be a conflict between current and former wishes, the person’s current wishes and feelings should be considered alongside those expressed in the advance directive as they represent the person’s current mental and emotional state and attitudes.
  8. Decisions not to comply with valid advance directives should be documented in the patients’ medical files and an explanation should be given to significant others, relevant supervisory bodies and health care proxies.
  9. In order to guarantee equity in the provision of health care and to ensure that people have a real choice, Alzheimer Europe emphasises the need to increase the availability and improve the quality of palliative care services/facilities.
  10. Alzheimer Europe urges governments to provide a clear statutory basis for effective advance directives with appropriate safeguards and a framework of procedures to ensure their effectiveness.

A growing number of its members consider that governments should legally recognise advance directives and make refusals of treatment expressed in advance directives legally binding albeit with adequate safeguards.

The full position paper can be downloaded below.