Dementia: Is it time for advanced directives?

Dementia is a mental disorder characterised by severe and progressive cognitive decline manifesting itself in severe memory loss, confusion, language difficulties, mood variations and personality changes.

It is estimated that around six million people residing in EU member states have the condition. In Malta, one per cent of the general population has dementia, a figure that is expected to double by the next 25 years.

In Europe, there is an ongoing discussion about finding ways to promote the use of advanced directives (living wills) in the field of dementia covering a wide range of health-related issues. Since dementia involves the gradual and irreversible deterioration of mental activities, the scope of any advanced directive is to cover patient consent towards treatment applications, end-of-life care, palliative care and statements about psychological, spiritual and religious preferences.

It is important that people with dementia are given the opportunity to exercise their right to self-determination when they still have the mental capacity to do so. This can only happen in the initial stages of the disease process, thus highlighting the importance of early diagnosis and disclosure. As the disease progresses, forward planning becomes impossible.

Advanced directives are usually associated with life-threatening illnesses, where the provisions contained usually concern end-of-life decisions. Indeed, the concept of advanced directives pioneered in the late 1960s was to give individuals the opportunity to express the sentiment that when death is unavoidable, dignity and comfort should take precedence over efforts to prolong life. The situation is somewhat different in dementia since the patients may live with the disease for a very long time without having the mental capacity to make decisions concerning their health status. At various times during the progression of the illness, situations will most probably arise where health care decisions must be made. It should therefore be possible for advanced directives to be taken to cover the period of time when the illness makes it impossible for the individual to make decisions.

Advanced directives are not only of benefit to the patient per se but can also benefit the society. Making an advanced directive may be a good opportunity for a person to consider donation of organs or tissue for transplantation or research. Advanced directives could also be used to appoint a health care proxy with the power to make decisions on behalf of the person with dementia when the latter is no longer able to do so. These proxies may include legal representatives or family members who would be aware of the preferences, values, beliefs and wishes of the person they are representing.

Although advanced directives are not legally recognised in all countries in Europe, there is a growing consensus urging governments to legally recognise advanced directives with appropriate safeguards and a framework of procedures to ensure their effectiveness. They should not be confused with requests for active voluntary euthanasia, as advanced directives may also contain details of the patient’s wishes regarding palliative care. The aim of advanced directives is not to end the person’s life, even though decisions in an advanced directive may be closely related to treatment options aimed for health care professionals to decide on a course of treatment as per patient wishes. Individuals may choose to write advanced directives for a number of different reasons. For some, it is because they would not prefer to be kept alive artificially or do not want to undergo treatment for which there is no hope of recovery. This is usually coupled with the desire to avoid being a burden on others and an inner need to have total control on their lives. One argument against the use of advanced directives is that they involve making informed decisions about future care or treatment. The time between writing an advanced directive and it coming into effect may span a considerable number of years in which treatment options may have improved. If the situation permits, it is always important to regularly update advanced directives in order to ensure that when they are used, they are an accurate representation of the patient’s recent views. Although advanced statements do not currently have any legal status in Malta, it would be appropriate to start a serious discussion on the subject involving all interested parties.

Dr Scerri is a lecturer at the Department of Pathology, University of Malta and a board member of Alzheimer Europe.