There are many people who fear becoming old and ‘senile’ because once they become mentally frail they will no longer be able to tell people what their wishes are, especially in relation to medical treatment. Currently the position is that doctors dealing with the mentally frail are governed by what is known as ‘good medical practice’: because the person concerned cannot give consent, measures are taken ‘in their best interests’. Most teams of professionals dealing with the elderly in the UK would discuss the dilemma with the person’s family, although the latter have no legal force to sway the doctors one way or the other (enduring powers of attorney specifically exclude medical matters). ‘Good medical practice’ may mean that a person undergoes an operation or is given some form of treatment that his family and friends know would have been refused had the person been competent.
In the United States there has been legislation in many states to try to insist on the autonomy of the person under consideration being paramount, and to do this the person must make a statement basically saying how far he would like doctors to go in the event of him/her becoming incapable of giving informed consent. Obviously such a statement must be made before any brain damage has occurred. This statement is called a living will and describes a form of anticipated consent. The following is an example of a living will:
It is my express wish that if I develop an acute or chronic cerebral illness which results in a substantial loss of dignity, and the opinions of two independent physicians indicate that my condition is unlikely to be reversible, any separate illness which may threaten my life should not be given active treatment.
In the USA this is a legally binding document, but this is not the case in the UK. The above example is only one type of document that could be drawn up; some people would perhaps want to refuse life-support machines or mutilating operations but would want antibiotics or other ‘invasive’ medical treatments. The UK is certainly different in its treatment of the very mentally frail and few doctors here would deem it appropriate to put someone with advanced dementia onto life-support machines or subject them to major operations without much thought and significant benefit to the individual. Good medical practice, however, still leaves important decisions in the hands of comparative strangers whose moral and ethical values may differ markedly from the person they are treating.
That is not to say that good practice does not currently allow for the extremely mentally frail with other severe illness to die pain free and with dignity. The British Medical Association (BMA) was initially reluctant to acknowledge the need for living wills, and in the 1980s its Ethics Committee reported they were quasi-legal documents that could arouse fear in some people. The debate has continued, however, and new impetus has been given to the topic by the large numbers of people affected by AIDS. The Terrence Higgins Trust, a leading AIDS charity, has produced its own living will and distributes copies free of charge. Because HIV-related diseases and AIDS affects a predominantly younger population than dementia, it has focused attention away from age and onto the point at issue, personal autonomy. The latest statements from the BMA encourage debate on the issue. It is a topic arousing Parliamentary interest with a view to giving it some legal status as is now the case in the Netherlands.
The need for discussion around this very important topic is evident. I feel very strongly that many people would contemplate writing a living will because currently many institutions caring for the elderly mentally frail are so under-funded and under-staffed that the reality of life in these places fills many people with dread.
In such circumstances, however, a living will coming into effect must never be used to decrease the funding to this vital part of the health service merely because of a cynical anticipated lack of demand later. The living will debate is only valid if more resources are placed into this sector so that the reality for the elderly mentally infirm in care is of excellent architecture with enviable surroundings, single rooms with bath and toilet, and sufficient care staff properly trained to ensure life with dignity. A living will for intercurrent illness would then truly enhance a person’s autonomy.
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