Autopsy: consent, completion and communication in Alzheimer's disease research

Age and Ageing,  May, 1993  by Elizabeth M-F. O. King,  Amy Smith,  Kim A. Jobst

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Copies of the signed consent to autopsy form are sent to the family doctor, family or next-ofkin, and for inclusion in the general hospital notes, psychiatric notes, residential or nursing-home notes and our office administrative files. A further copy is kept in the OPTIMA study notes, together with the original form. An explanatory letter and an alerting label for affixing to any relevant notes accompanies these copies giving contact telephone numbers providing 24-hour, 7-days-per-week cover.

When the researchers are informed of death, the family is contacted and asked to re-endorse the consent form which should accompany the body. This is necessary in order to fulfil legal requirements and simply involves re-signing and dating the previously signed form. Where this is not possible, verbal re-endorsement will suffice providing a written form can be obtained by return of post. The relevant doctor issues the death certificate which enables the body to be released for autopsy. The pathologist is told of the death, and transport of the body is arranged.

In our case we have been careful to establish a reliable relationship with one particular undertaking firm prepared to travel far afield and who understand and support our specific requirements. Such an arrangement ensures both a committed and high-quality service. The family is informed when the autopsy is to take place so that funeral arrangements can be made.

5. Post-autopsy visits

In our experience, as in that of Valdes-Dapena, the post-autopsy visit is a vital part of the whole autopsy process [19]. Results are often keenly awaited by both families and clinicians. There is no doubt that the shorter the delay the better it is for the grieving process of the family, the collaboration of other professionals and the research [20, 21]. Regular clinico-pathological meetings which include all those who have played a part in the management and investigation of a case, enable those involved in medical, nursing, and diagnostic procedures to increase their skills and to become better informed.

It is very important that the research team fulfil their commitment to the family by contacting them as soon as the histopathology is available. An open invitation is made to meet either at the hospital or in the home of a relative and can include as many of the family as are interested .

The opportunity to ask questions, discuss specific findings and perhaps to resolve some of the lingering doubts and uncertainties helps the bereaved to accept the reality of the loss and to provide reassurance as they re-evaluate the past. In the words of a relative of one of our patients |I now have the answers to my questions and my mind is at rest on these points'.

Conclusion

Our experience of designing a protocol in which obtaining autopsy is essential has produced mutually beneficial results meeting the needs of families and scientific enquiry alike. We have identified five main factors which have enabled us to achieve a very high (97%) autopsy completion rate. The first request for autopsy consent made at the initial screening interview revealed that many families already held positive attitudes to autopsy. Our approach in making the request has been influenced by our own work in acquiring counselling skills and our understanding of the process of anticipatory grief, which, with clear explanations and information, enables negative attitudes to be explored and reassessed.