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The attitudes of relatives to autopsy: a misconception
  1. Dimitris A Tsitsikas1,
  2. Morag Brothwell1,
  3. Jo-Anne Chin Aleong2,
  4. Andrew T Lister1
  1. 1Department of Haematological Oncology, St Bartholomew's Hospital, Barts and the London NHS Trust, London, UK
  2. 2Department of Clinical Pathology, Barts and the London NHS Trust, London, UK
  1. Correspondence to Dr Dimitris A Tsitsikas, Specialist Registrar in Haematology, St Bartholomew's Hospital, West Smithfield, London EC1A 7BE, UK; dimitristsitsikas{at}hotmail.com

Abstract

Aim Hospital autopsy rates have been falling steadily over recent decades. One factor that has been implicated in this decline is the perception that the general public views postmortem examinations unfavourably and that this often makes clinicians reluctant to discuss autopsy with families and seek their consent. The aim of this study was to test this assumption.

Objectives/methods In the division of lymphoid malignancies at St Bartholomew's Hospital, we suggested autopsy and discussed it in depth with the families of all the patients who died in hospital in an 8-month period in order to assess whether the autopsy rate could be increased by improving the approach to the relatives.

Results Consent for a postmortem examination was requested in 18 of 23 cases and granted in 16 cases, giving a consent rate of 89%, and an overall rate of autopsy of 69.5%.

Conclusion The attitude of the general public is positive overall, and translates into high autopsy rates when the value of the examination is presented honestly and the details of the procedure are adequately explained.

  • Autopsy
  • communication skills
  • consent
  • haemato-oncology
  • medical education
  • postmortem
  • research
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Introduction

Autopsy has been historically one of the most valuable tools in exploring human physiology, understanding pathophysiological processes, and studying the natural history and epidemiology of diseases. However, during the second half of the 20th century, there has been a steady decline in the number of hospital postmortem examinations, with the rate of autopsies falling by as much as 80%.1

Among the several factors implicated in this decline,2 the unfavourable view of the general public to postmortem examinations has been thought to play an important role.3–5 Expecting a negative reaction, clinicians may be reluctant to discuss autopsy with families and seek their consent. However, other reports6 7 have indicated that the public may be more receptive than is often believed by clinicians, and that good communication and adequate explanation of the procedure is associated with higher consent rates.

In the division of lymphoid malignancies at St Bartholomew's Hospital, we undertook a project where autopsy was suggested and discussed in depth with the families of all the patients who died in hospital between August 2009 and March 2010, in order to assess whether we could increase our autopsy rate by improving our approach to the relatives.

Methods/objectives

The Department of Haematological Oncology at St Bartholomew's Hospital has an established protocol for dealing with the relatives of deceased patients and, among other things, it includes request of permission for a postmortem examination in all cases. Even though we have been largely adhering to the above policy, it was felt that the rate of autopsies was low and that this could potentially be the result of our own approach to the subject. In fact, an internal ‘snapshot’ audit in 2006 involving only 10 cases showed that a hospital postmortem was either not requested at all in some cases, or mentioned in brief, without placing any emphasis on its importance. In any case, only one of those 10 patients underwent a hospital postmortem examination.

Between the months of August 2009 and March 2010, the division of lymphoid malignancies undertook a systematic approach to ensure that an autopsy was always suggested and properly discussed. As controls, we used data from the same months 1 year earlier: between August 2008 and March 2009, there were 22 inpatient deaths in the department of lymphoid malignancies. According to the mortuary records, six autopsies (27%) were performed.

All results included in this paper refer to hospital autopsies. There were no coronial autopsies in the department during these time periods.

The discussion with the relatives was held in a quiet room in the presence of the nurse in charge on the ward. Autopsy was introduced by saying that it was our policy to ask permission for a postmortem examination in all cases and we explained that the reason was primarily for our own education and better understanding of diseases; a mention of the historical value of autopsy in medical education and progress was also made. We also explained that we were confident enough to state the cause of death and therefore had already issued a death certificate, but we were keen to know whether there was anything we had missed that would improve our practice in the future. It was clearly stated that this was entirely optional and we would rather not talk about it further if they found it distressing, and not proceed with the examination if they found it hard to make a decision.

We then addressed all the points mentioned in the consent form, and specifically a full versus limited examination, organ retention for examination, and fate of retained organs (that is, return to the body, return to the funeral director, hospital disposal, or donation of organ/organs for medical education and research). These options were mentioned without suggesting any preference on our behalf. We then offered to answer any questions that the relatives might have about the process.

Results

There were 23 inpatient deaths from August 2009 to March 2010. Eighteen families (78%) were approached, and 16 consented to a hospital autopsy, giving a consent rate of 89% and an overall rate of autopsy of 69.5% (table 1).

Table 1

Autopsy request and consent rates between August 2009 and March 2010

In 5 (22%) cases, autopsy was not requested. In three cases this was because the death certificate was already issued by another team (Intensive Treatment Unit), and in two cases postmortem was not offered on the assumption that there would be religious objections.

Of the two cases where consent was not given, one relative objected to a postmortem examination on the grounds of finding it undignifying. The other family refused to come to the ward to discuss it with us, and we took that to be a negative response even though other factors might have led to their decision (eg, pressure of time).

Commonly encountered concerns from the families who gave consent included fears about disfigurement of the body, delays with the funeral and, less often, the opinions of other members of the family.

Fifteen of the 16 families consented to a full postmortem examination, whereas one agreed to an examination limited to the lungs.

In seven cases (44%), the retained organs were donated for medical education and research.

The cause of death was significantly different from the one stated in the death certificate in two cases (12.5%). In the first case, the cause of death on the death certificate was acute lymphocytic leukaemia, but at autopsy it was found it to be disseminated invasive fungal infection that had not been diagnosed and therefore not treated antemortem. In the second case, the cause of death on the death certificate was pneumonia in the context of chronic lymphocytic leukaemia, but at autopsy it was found to be infiltration of the lungs by chronic lymphocytic leukaemia.

We obtained pathological tissue (affected lymph nodes or lymphomatous masses) for storage in the tissue bank of our laboratory from five (31%) patients. The benefits of the autopsies to our clinical and academic work are summarised in table 2.

Table 2

Clinical and scientific benefits from performed autopsies

Overall, all but one family displayed a very positive attitude towards the medical profession, medical research and education. All were keen to proceed ‘if this was something that could help others in the future’, whereas some felt they would like to know ‘exactly’ what happened. Even though it cannot be objectively quantified, we felt that most families were appreciative of our commitment to improving our knowledge, and the fact that we remained the physicians of their loved one even after death.

Discussion

Despite the irrefutable value of the postmortem examination in identifying the cause of death, and its role in audit, quality control, ongoing medical education and research, and improvement of public health, the hospital autopsy rate has been steadily falling over recent decades.

Several factors have been implicated, including the development of more sophisticated and accurate diagnostic modalities, little emphasis during undergraduate medical education, and difficulties obtaining consent reflecting the hesitancy of the relatives, and reluctance of clinicians to offer a postmortem.8 The latter may stem from concerns about unexpected findings and potential future litigation, an assumptive anticipation of negative reactions of the relatives, or their own unfavourable predisposition to autopsy either because they fail to see the benefit or because they find it undignifying to the deceased.

We feel that special mention should be made on the perceived unwillingness of the public to participate and consent to postmortem examinations and the resulting reluctance to offer the option. In doing so, we may often run the risk of projecting our own preconceptions and prejudices. In fact, several surveys and studies have shown very variable opinions on the necessity and ethical grounds of hospital autopsies among healthcare professionals.1 8 9

There is a hidden paternalism in avoiding discussions with families on the assumption that they would find the subject distressing or the decision hard to make. It is even worse to assume and expect a defensive or negative attitude from the relatives or friends of deceased patients and therefore not offer them the opportunity to do something altruistic but also provide some closure by investigating the death to the best of our ability. Ironically, we may have been paternalistic ourselves by not contacting the relatives of the three patients who had died in the Intensive Treatment Unit; these relatives had already gone home with no other reason to come back to hospital, and it was felt (rightly or wrongly) that discussing the issue in a telephone call or asking them to return would be insensitive.

Objections of relatives to autopsy may be due to religious beliefs and practices, or involve concerns about the handling of the body, potential mutilation and disfigurement, interference with funeral arrangements, or simply wanting to conclude matters as soon as possible.10 In certain religions such as Islam and Judaism where the body has to be buried as soon as possible, ideally within 24 h of death, autopsy is generally rejected unless required by law.8 Interestingly, we too made the assumption that religious background would determine the attitudes towards autopsy, as we did not suggest an autopsy for the two patients who belonged to those faiths. We found though that non-religious concerns were amenable to discussion and that giving a detailed explanation of the procedure helped to separate facts from myth and reassure the families.

Although the sample sizes were relatively small, precluding statistical analysis, the results are notable for the considerable rise in the number of autopsies following the intervention, and they confirm previous findings to indicate that (1) the consent to autopsy rate exceeds the autopsy request rate,11 (2) the public can appreciate the value of the postmortem examination,12 (3) a very important factor in obtaining consent is the approach by the physicians and their communication skills,6 7 13 and (4) such results are reproducible internationally.14–16

In our sample, the vast majority of relatives (89%) consented to autopsy when the value of the examination was properly presented to them. We find even more revealing the fact that almost half (44%) donated the retained organs for medical education and research when it was not even suggested to them, indicating a positive attitude towards medicine, and also that being part of something ‘bigger’ was potentially emotionally beneficial to them during the difficult period of bereavement.

These results are in contrast to our practice before we undertook this approach, even though our performance was already above the UK average. Treating the same population in the same environment over the same period of time, the autopsy rate increased from 27% to 69.5% by changing the way we communicated with relatives.

We show that attitudes towards autopsy among the relatives of patients with haematological malignancies are positive overall. However, that in itself does not necessarily translate into a higher number of postmortem examinations. It is down to our willingness to seek consent, and our communication skills to actually get consent.

Take-home messages

  • Despite the known benefits of postmortem examinations, the autopsy rate is declining.

  • Physicians should be assured that the attitude of the public towards autopsy is positive overall.

  • With thorough explanation and good communication skills, high rates of autopsy can be achieved.

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References

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Footnotes

  • Competing interests None to declare.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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