Once a person’s dementia has progressed beyond a certain stage, the duration of life becomes less important than its quality. Most people, be they family carers or professional advisers, would not wish to preserve at all costs an existence that might be a burden to the sufferer. A discussion between the family and the doctors will usually result in a joint decision about the most appropriate form of treatment and when this should be withheld. In some circumstances treatment may need to be fairly active, but in others it may consist merely in ensuring that the person with dementia does not suffer pain, distress, or thirst. It is the doctors’ and nurses’ job to try to help people die with dignity and with the least suffering possible.
Sometimes, a demented person’s illness, a pneumonia for example, may look certain to end in his or her death and it will be decided not to treat the infection, but rather to pay attention to alleviating distress and suffering. After a few days, however, it may become apparent that despite not being treated with antibiotics, the patient is rallying and the pneumonia receding. Under these circumstances many doctors will elect to institute treatment with antibiotics to speed up the recovery, rather than allow it to take place over a prolonged period of time resulting eventually in a greater degree of dependence and a lessened quality of life than would otherwise have been the case. The point at which to intervene with antibiotics in such cases is often difficult to determine and it is not possible to lay down ground rules. Each situation has to be considered on its own merits.
Few, if any, people die of dementia, the majority succumbing to intercurrent infections such as pneumonia. Sometimes, however, other factors contribute to a patient’s death, for example malnutrition and a failure to drink. The body in general will deteriorate, sometimes slowly, sometimes not so slowly, until the sufferer dies. The exact mechanism of this is often uncertain as it can appear to occur without a specific intercurrent illness.
When a person with dementia does die, it is possible that the doctors may ask whether you would be prepared to give permission for a post-mortem examination of the brain. Many relatives find this a difficult decision to make, often because they haven’t been given the opportunity to think about it in advance. The only definite way of making a diagnosis of the condition that has caused the dementia is to examine the brain after death. It is extremely helpful to doctors to have their suspicions about the diagnosis confirmed, or the reverse. Knowledge gained in this way may well help them in the management of their future patients.
We also need to know a lot more about the changes that occur in the brain in people who have dementia and much of the research can only be undertaken on brain tissue donated at a post-mortem examination. The new approaches to treatment and the increased understanding that we have recently gained have nearly all been based upon the results of research carried out using post-mortem material. There is no reason why a postmortem examination should significantly delay the arrangements for a funeral and it will not cause any further suffering to the deceased. The examination is undertaken in a very discreet manner and there is usually little, if any, evidence that it has taken place.
In many cases it is very likely that if the deceased sufferer had appreciated in earlier life what sort of illness he or she was going to develop, he or she would have given permission in advance for a post-mortem examination, in the hope that it might contribute knowledge that might help doctors and medical scientists to treat others.
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