Family Practice Vol. 18, No. 3, 304-308
© Oxford University Press 2001
Family members' experiences of autopsy
dr. H. Brouwerstraat D 7, 9663 RK Nieuwe Pekela and
a Department of General Practice, University of Groningen, The Netherlands.
Oppewal F and Meyboom-de Jong B. Family members' experiences of autopsy. Family Practice 2001; 18: 304–308.
Received 11 April 2000; Revised 13 September 2000; Accepted 8 January 2001.
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Abstract |
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Background. The experiences of family members will teach us how to handle an autopsy, the ultimate quality assessment tool.
Objective. The aim of this study was to determine surviving family members' experience of autopsy.
Method. Seven GPs were asked to approach surviving family members of autopsied patients to ask for their co-operation with an interview about their experiences. The interview took place at the residences of the individual families, 6 months to a year after the autopsy. A partially structured set of interview questions was used by the interviewer (not a GP) who had experience with the grieving process and with grief counselling.
Results. Twelve family members of autopsied patients were interviewed: six partners, three mothers, one offspring and two sisters. In the case of one 35-year-old man, the autopsy was performed as a judicially required post-mortem. The GP initiated the autopsy request in eight cases. It appears that there is definite room for improvement in how the GP handles the topic of autopsy. The best way to explain it is to compare an autopsy with an operation. Several family members had specific concerns about the appearance of their relative after the autopsy. Several of the family members indicated that they were reassured by the autopsy results. Clarity about the cause of death was important, and reassurance that they had not overlooked important symptomatology helped the family members in their grieving process.
Conclusion. A request for autopsy is one of the most difficult questions which has to be asked at a very difficult time. Three main considerations were important for the relatives: they wanted an answer to the questions "Is there something I overlooked", "How could this have happened" and "Are there hereditary factors which could have consequences for the rest of the family?" The GP is the optimal professional to discuss the autopsy report with the surviving family members. The best approach for the GP includes an open attitude, paying attention to informing the family and supporting their grieving process.
Keywords. Autopsy, family members, interview, necropsy.
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Introduction |
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Autopsy is a research tool which has been used for centuries. It nonetheless still retains certain mystical qualities for GPs and lay people alike.
Autopsies remind GPs of the time they spent learning gross anatomy during medical school, and they therefore associate autopsies with the smell of decomposition and death. Lay people experience a variety of emotions such as: the body is being unrecognizably mutilated, the person has suffered enough, and it is certainly not going to bring them back to life.1 Now that in present day medicine a greater emphasis is being placed on the active participation of patients and their families, it is time that the attitude and feelings of the families with regard to autopsies are investigated.2
Research into the experiences of next of kin will help both family and GP deal with the borderline situations which are so often encountered.3,4 Autopsy is the ultimate toll for quality assessment and may be regarded as a ‘boundary marker’ between life and death: it gives direction; gives the bystanders an opportunity to reflect on life and death, and the relativity of each; and provides scientific answers. Hirsch has reported on his experiences with surviving family members, and gives advice on how to proceed with such interviews.5 A recently expressed opinion states that autopsy is not something which should be done as a favour to the family, but more something to which the family has a right, of which they should be informed.6 In the present paper, the following question is dealt with: "What is the experience of autopsy of surviving family members?"
Based on these experiences, advice is given concerning the optimal way for the GP to conduct discussions with surviving family members.
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Method |
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It is generally difficult to arrange for an autopsy in The Netherlands for those who have not died in hospital.7 The foremost concern is that the costs of transportation and of the autopsy itself will not be covered by health insurance companies. These concerns have been addressed by the Refaja hospital in Stadskanaal (in the Province of Groningen) by having all autopsies conducted in a single comprehensive centre. They then offer their services to the GPs in their area. This opportunity has been made use of with some regularity since 1998, and the initial experiences have been recorded. All the autopsies discussed here were performed by the same pathologist, Dr FMM Smedts, Clinical Pathologist.
Seven GPs were asked to approach surviving family members of autopsied patients to ask for their co-operation with an interview about their experiences. All but one of the patients died either at home or at work, and an autopsy was requested by the GP in each case. One GP recommended that a particular family not be approached due to socio-economic factors. One family withdrew their consent, and ultimately nine families from six practices were interviewed during 1999. The interview took place at the residences of the individual families, 6 months to a year after the autopsy.
A partially structured set of interview questions was used by the interviewer (not a GP) who had experience with the grieving process and with grief counselling.
Focus points for the interviews were, among others:
- Was the family fully aware of the possibility of an autopsy, and who initiated the request?
- Was the cause of death identified, and did it have any consequences for the surviving family members? Was organ donation an issue?
- Who discussed the autopsy report with the surviving family members, and when did this take place?
- What effect did the autopsy have on their grief and on their grieving process?
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Results |
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Twelve family members of autopsied patients were interviewed. This included six partners, three mothers, one offspring and two sisters.
The group of autopsied patients included two women and seven men, ranging in age from 30 to 62 years (mean 46 years). In the case of one 35-year-old man, the autopsy was performed as a judicially required post-mortem after the family's permission for a normal autopsy was obtained. In all cases, the cause of death was determined to be the result of natural causes, including that in the coroner's case. The cause of death was identified conclusively in all cases (Table 1
): three myocardial infarctions and six other different causes. Arrhythmogenic right ventricle dysplasia (ARVD) is a chromosomal defect and therefore the immediate family should be screened.8
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The GP initiated the autopsy request in eight cases. In one case, the autopsy request came from the family, as there was a previous history of three cases of sudden death among the relatives. Most of the families were aware of the possibility of requesting an autopsy. Most of the patients died either at home or at work. In most cases, the death was sudden. One woman died in hospital shortly after admission. In the coroner's case, the suspicions of the justice department proved to be unfounded, as the death was determined to be due to natural causes, although the family remained dubious.
During the study period, the law concerning organ donation (WOD) was passed, and the GP was therefore compelled to ask if the patient had a personal directive concerning organ donation. This question may interfere with the request for an autopsy. In reality, GPs rarely ask this question. The subject was raised with only one family participating in this study. The donation of skin and/or corneal tissue is the only relevant donation for persons who die outside of a hospital setting since other organs cannot be preserved.
It appears that there is definite room for improvement in how GPs handle the topic of autopsy. According to the families interviewed, too little attention was paid to explaining exactly what is involved in an autopsy (Table 2). Only two of the families in this study were satisfied with the GP's explanation. The best way to explain it is to compare an autopsy with an operation. It is possible that in the circumstances surrounding the sudden death of an individual, too little attention is paid to this aspect. This may be the fault of the GP, although one cannot disregard the fact that the perceptions of the family members may be distorted somewhat by the emotions inherent in such a situation.
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The results of the autopsy were available in six cases after 1–3 weeks and in the rest after 2 months. It should be possible to discuss autopsy results with the family within 3 weeks, sooner than in the present case. The families who were interviewed were actually not all that concerned with the timeliness of the autopsy results, but were concerned with discussing the results in a more relaxed atmosphere than that which is available immediately following the death of the family member.
Several family members had specific concerns about the appearance of their relative after the autopsy. Some asked themselves if there would be any signs of fluid leakage; one asked if the legs would still be attached to the body. Due to the fact that the coffin was closed, this was not something which they could verify initially.
The timing of the burial/cremation was not affected in any case. Our experience tells us that there is no need for concern in this area, but possible uncertainty definitely plays a role for family members.
Several of the family members indicated that they were reassured by the autopsy results. They had been concerned by the possibility that they had overlooked important symptoms. Family members were concerned specifically that they had been partially responsible for the death, and wanted to know if there was any way in which they could have prevented it. This was one of the primary reasons for giving consent for the autopsy. The absolution of guilt and the resulting reassurance were common to most of the interviews. One of the family members stated: "I now know what it was, and I no longer feel guilty about it".
Hearing autopsy results was a positive experience for most of the respondents. Clarity about the cause of death was important, and reassurance that they had not overlooked important symptomatology helped the family members in their grieving process. At least one half of the family members interviewed indicated that their guilt feelings were significantly reduced afer hearing the autopsy results. Some of the family members expressed their surprise: "How is it possible that the coronary arteries were half occluded, and that my husband had no complaints?"
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Discussion |
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Brown1 identifies the main concerns which lay people have with autopsies: modern diagnostic methods are virtually flawless, he/she has suffered enough, anxiety about the mutilation of the body, and the delay of the burial or cremation. The following may be added: it will not bring him/her back to life anyway.
The present research only included people who had not been swayed by the above arguments. Three main considerations were important for the relatives: they wanted an answer to the questions "Is there something I overlooked", "How could this have happened" and "Are there hereditary factors which could have consequences for the rest of the family?" Autopsy usually answers these questions. In the case of mors subita (sudden death), autopsy is often the first professional assessment which takes place, and usually there has been no diagnostic work done.
Occasionally, the family was surprised at the request for an autopsy. They thought that this was only possible when the death was suspicious or not due to natural causes (such as in the case of violent death). The different terms used for autopsy (autopsy, post-mortem, obduction, necropsy) were often confusing for the family members.9 The GP has an important role in this regard, both in the giving of information and in the explanation covering what actually happens during an autopsy.1
Once it has been explained to surviving family members that an autopsy entails, as with an operation, the opening of the body and an examination of the internal organs, most of their concerns are taken care of. The GP should realize that, as with organ donation, the request for autopsy is one of the most difficult questions which has to be asked at a very difficult time. Perhaps this is the reason that this question often is left unasked. The surviving family member is stunned, and has lost all concept of time. This is especially true in the case of mors subita. Perceptions are disrupted by the overwhelming feelings of grief. The constant availability of the family GP in these situations is important for several reasons.
When the GP discusses the autopsy results with the family, he/she should make a special appointment, so that all involved family members can be present, and he/she should ensure that ample time is available. In the coroner's case, the autopsy results were not discussed with the family, and several months passed before the GP received an (incomplete) report.
This caused much speculation and worry on the part of the family members. The question of who discusses the autopsy results with the patient's family is important. That it should be a GP seems evident, and this GP should be well informed.10
There were a few family members who appreciated the opportunity to read the autopsy report themselves, even though they were not familiar with all the terminology. In the USA, it is standard procedure for the clinical pathologist to discuss the autopsy results with the family.10,11 In this study, the logical person to discuss the results was the GP, especially since she/he is the medical person closest to the family.12
Several of the family members interviewed indicated an interest in speaking to the specialist who had looked after the patient in hospital. The GP could arrange for such a discussion, and may even decide to participate.13
Recommendations
The overall experiences of family members with the autopsy of a deceased family member were positive.
The concerns family members have regarding autopsy are based partially on irrational grounds and partially on a lack of kowledge. The GP should be aware of these considerations, and medical professionals should address the above-mentioned concerns more adequately. The autopsy results should be complete, in writing, after a maximum of 2–3 weeks. It is the responsibility of the GP then to discuss the autopsy results with the family members.
Hirsch5 has several noteworthy suggestions to address these issues with which we agree. Taking time for the discussion with the family is of primary importance. The GP should not be rushed, and should realize that the discussion does not have to be limited to one meeting. If there are feelings of guilt, the GP should explain that this is a common and natural reaction, which the GP also experiences. If it is impossible to answer a specific question, the GP should honestly say: "I don't know." This builds trust, also with regard to other answers.
The family must have the courage to face the truth, even when it is painful. Uncertainty is more difficult to face than pain.
Even if you have positive intentions, do not be dishonest. Try to make the results sound as positive as possible by saying, for example: "he didn't suffer" or "even if he would have been in hospital, they would not have been able to save his life". Statistical considerations are of no benefit to the family.
Repeat important information, perhaps by rephrasing it. Realize that family members will not usually understand everything after a single discussion. The strength of the GP is that he stays in contact with the family, and can, at a later date, review earlier discussions and in that way help the family through their grieving process.
Whether you are deeply religious, or a true atheist, make sure that your own religious feelings, or lack thereof, play a minor role beside those of the family. Do not mention God initially, but if the family mentions his name, do not hesitate to repeat it.
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Acknowledgments |
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We would like to acknowledge the co-operation of Mrs M van de Mheen with this research project.
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References |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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1 Brown HG. Perceptions of the autopsy: views from the lay public and program proposals. Hum Pathol 1990; 21: 154–158.[Web of Science][Medline]
2
Turner J, Raphael B. Requesting necropsies. Greater humanity and awareness of suffering will help doctors and patients alike. Br Med J 1997; 314: 1499–1500.
3 Schaaf G, Meyboom-de Jong B. Hoe wordt euthanasie door naasten ervaren? [How is euthanasia experienced by family members?] Groningen: Department of General Practice, University of Groningen, 1991.
4 McPhee SJ, Bottles K, Lo B, Saika G, Crommie D. To redeem them from death. Reactions of family members to autopsy. Am J Med 1986; 80: 665–671.[Web of Science][Medline]
5 Hirsch CS. Talking to the family after an autopsy. Arch Pathol Lab Med 1984; 108: 513–514.[Web of Science][Medline]
6 van den Weel JG. Obducties als kwaliteitsinstrument serieus nemen. [Autopsies have to be taken seriously as an instrument for quality assurance] (with English summary). Ned Tijdschr Geneeskd 1999; 143: 2351–2354.[Medline]
7 Oppewal F, Schoots CJF. Nut en noodzaak van obductie in de eerste lijn. [Utility and necessity of autopsies in primary care.] Huisarts en Wetenschap 1997; 40: 18–20.
8 Daele MER van, Berger RMF, Smeets J, Hess J. Plotselinge dood bij jonge mensen door aritmogene rechterventrikeldysplasie. [Acute death of young people because of arrhythmogenic right ventricular dysplasia.] Ned Tijdschr Geneeskd 1998; 142: 32–36.[Medline]
9
Sanner M. A comparison of public attitudes toward autopsy, organ donation and anatomic dissection. A Swedish survey. J Am Med Assoc 1994; 271: 284–288.
10 McPhee SJ. Maximizing the benefits of autopsy for clinicians and families. What needs to be done. Arch Pathol Lab Med 1996; 120: 743–748.[Web of Science][Medline]
11 Valdes-Dapena M. The postautopsy conference with families. Arch Pathol Lab Med 1984; 108: 497–498.[Web of Science][Medline]
12 Elema J. Het postmortale onderzoek in de huisartspraktijk. Practitioner 1989; 123–126.
13 Wagstaff R, Berlin A, Stacy R, Spencer J, Bhopal R. Information about patients' deaths: general practitioners' current practice and views on receiving a death register. Br J Gen Pract 1994; 44: 315–316.[Web of Science][Medline]
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