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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

Introduction

The importance of autopsy in the advancement of medical and scientific knowledge has been well documented over the centuries [1]. However, autopsy rates in both the United States of America and the United Kingdom have declined since the Second World War, recently reaching an all-time low. As both the medical profession and the lay public become less familiar with the uses and benefits of autopsy, the principle of |mortui vivos docent' (|the dead teach the living') has been largely forgotten [24]. Nowhere is this more important than in Alzheimer's disease where the definitive diagnosis remains histopathological and where many published studies are limited by being based upon clinical diagnosis alone which is known to have a false positive rate of between 12% and 35% [5]. Antemortem brain biopsy is rarely justifiable in dementia; autopsy is therefore essential for diagnosis [6].

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The Oxford Project to Investigate Memory and Ageing (OPTIMA) began in 1988 as a prospective longitudinal study, aiming to improve understanding of the disease process and to develop an antemortem diagnostic test for Alzheimer's disease [7-9] . Subjects with and without significant cognitive deficit have detailed and repeated assessments during life concluding with histopathological examination of the brain.

To date, 260 subjects have been assessed in life and 250 (96%) have consented to autopsy. Ten consent forms (4%) remain unsigned. Sixty-one subjects have died and 59 have undergone autopsy (97%).

In this paper we describe five main factors that we have found to be critical in achieving this very high completion rate which we think may be of benefit to others studying conditions in which autopsy is an important investigation: 1. The fact that one asks at all and that all are asked 2. The way in which one asks 3. Existing attitudes to autopsy:

(a) co-operation

(b) pursuit of knowledge

(d) endorsing subjects, wishes

(e) unresolved questions

(f) obstacles to consent 4. A clear administrative infrastructure 5. Post-autopsy visits.

1. The fact that one asks at all and all are asked

This may seem self-evident. However, the declining autopsy rate although attributed in large part to better diagnostic techniques may also reflect a reluctance on the part of the medical profession to request autopsy consent [10, 11].

In discussing autopsy we breach the taboos of our culture by confronting people with the inevitability of death. Understanding why autopsy is needed enables professionals to broach the subject with confidence. In designing our protocol we recognized that we should be prepared for whatever reaction our request might provoke in our patients, their families and other professionals.

2. The way in which one asks

People vary in the extent to which they understand and accept the course of a dementing illness. The way in which they cope with the losses that it inevitably involves has meant that we have encountered reactions which range from indignant refusal, anger, fearfulness and evasiveness through a matter-of-fact acceptance to an eager, positive wish for autopsy. The sadness, incomprehension, disbelief and denial which may also be encountered are part of anticipatory grief which is the experience of the painful reality of relentless loss prior to death [12]. Discussion of autopsy may therefore provide a valuable opportunity for the expression of emotion and appropriate bereavement counselling [13].

Integral to our request is the commitment we make to both the family and other professionals to share the detailed results of autopsy when they are known.

The question of autopsy is introduced to those participating in the research when the protocol is explained at the initial visit, although signed consent may not be obtained until a later date. If the person is able to understand the request and the reason for it, his or her consent will be sought, in addition to that of the next of kin. Discussion is encouraged within the family, allowing as much time as is required to reach a consensus decision.

3. Existing attitudes to autopsy

It is important to recognize that each individual and family entering research is unique. Culture, class, belief systems, present circumstances and past experiences all shape attitudes to loss, illness, death and autopsy [14]. When the reasons for autopsy are understood many people are willing to give their consent at once. Indeed, as has been the case in other studies, we have found that many have considered it well in advance [15].

A number of families in our study have expressed their thoughts and feelings about autopsy both in conversation and in writing. Their various motives and goals are described below using illustrations from letters we have received from relatives of those who have had an autopsy as part of the study.

(a) Co-operation: For some it is sufficient that their co-operation is requested by those in perceived positions of authority, for example medical and/or nursing professionals. This has obvious ethical implications regarding informed consent and requires diligence on the part of the research team to ensure that information and explanations are given and understood and that people's trust is not abused [16].

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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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