Abstract
Abstract
Background:
A physician's obligations to deliver compassionate care do not end with a patient's death. When a patient dies there remains a responsibility to assist grieving family members. Unfortunately, many physicians feel ill prepared to assist in the bereavement process, not knowing what to say or how to say it. Although underutilized, the medical autopsy can play an important role in families' grief processes, particularly in those cases wherein uncertainties exist regarding the ultimate cause of death.
Discussion:
Here we postulate a role for the medical autopsy in assisting families through the grief process, which we demonstrate via an illustrative case. Effective communication of these results to family members is the key to its therapeutic effect.
Introduction
Case Description
The patient was a 65-year-old man with a history of alcoholism, recurrent pancreatitis, and chronic abdominal pain, who 6 months earlier underwent resection of a primary pulmonary osteosarcoma. Overall, he had suffered 15 months of progressive functional decline at home, characterized by multiple falls and a 40-pound weight loss. A magnetic resonance imaging (MRI) study suggested a possible metastasis to the hip joint. Despite aggressive treatment he continued to decline, and given his previously stated wishes his sister, acting as his surrogate decision-maker when he no longer had capacity, agreed that the focus of his care should be on maximizing his comfort and the withdrawal of invasive life-sustaining support.
Throughout the years preceding his death, the patient spoke often of a desire to “donate his body to science.” He reiterated this wish to his sister during the week prior to his death. When he was moribund, she asked his physician about pursuing an “anatomical gift” donation to the medical school. Given the numerous uncertainties in this case, especially regarding the abdominal pain and the possible metastasis to the hip, the patient's primary care physician raised the possibility of an autopsy. He explained that this could help answer important questions about his symptoms, and would very much be a “scientific gift” to the many clinicians who had cared for him, as it would help them better understand his illness and inform their care of future patients. He promised to share the results with her, and explained that the autopsy would not only be a gift to science, but also a gift to surviving family members.
The patient's sister agreed that the autopsy would be in accordance with her brother's wish, so it was performed the morning after his in-hospital death. The patient's primary care physician attended the autopsy himself, and wrote a personal letter to the patient's sister describing the findings and thanking her for her brother's gift. After receiving the letter, she contacted the primary care provider to thank him for the comfort the autopsy information provided. She gave permission for two of us (T.L. and J.T.), who had not been involved in his care, to read the letter and then interview her about the role of the autopsy in her own grieving process. The letter written by the primary care provider described the autopsy findings in layman's terms, and put them into the context of the patient's illness trajectory. It also made specific recommendations about their applicability to other family members, such as the importance of abdominal aortic aneurysm screening in those with a smoking history, and lipid screening at recommended intervals given unrecognized coronary atherosclerosis. The sister found this letter to be so touching and powerful that she sent a copy to everyone in her family, extending the gift of the autopsy to others.
Follow-Up
During the telephone interview, the patient's sister reported that the letter was powerful to her in two important ways. First, she felt it was a touching, sincere expression of compassion and sympathy. She commented several times on how special it felt that her brother's busy physician took the time to attend the autopsy, and then to write her a detailed letter explaining the results in such a personal way. “I didn't expect him to go,” she said. She felt that the act of writing the letter itself was an enormously compassionate gesture that she hoped more physicians would undertake. Second, it was illuminating and reassuring. Both the patient and his sister feared that his cancer had recurred (there was no evidence of recurrence in the autopsy), and that this may have played a significant role in his progressive functional decline and death. They also felt that no one really understood why he suffered such severe bouts of abdominal pain, or why his health declined so steadily over those last few months. Through insights gained from the autopsy, the physician explained the patient's abdominal pain as follows, in the text of the letter:
When I felt the actual pancreas, I could feel the calcium deposits that were the results of his recurrent bouts of pancreatitis. There was also a tremendous amount of scar tissue around all of his small bowels (these are called adhesions). The adhesions he had would trap the small bowel so that it couldn't function properly. Thus, all his abdominal pain and weight loss that made him so miserable was attributable to the pancreatitis and these adhesions—there was nothing anyone could have done to fix these problems, which reassures me that, in the end, we did the right things.
Discussion
The autopsy quite convincingly addressed questions that the patient and sister had, providing reassurance to the sister that they had done everything possible to help her brother. It also provided the sister with a profound sense of closure, which has helped her through the grief process. This is consistent with a previously published case report, describing the utility of postmortem examination in illuminating an uncertain cause of death in the hospice setting. 7 The autopsy results were similarly illustrative for the clinicians who cared for the patient.
Asking for an autopsy
Approaching family members about an autopsy is no trivial matter. This may, in part, explain the decreasing frequency of autopsies performed annually in the United States and elsewhere. 8 Survey literature highlights two main physician-cited barriers to obtaining autopsies in this setting: (1) difficulty obtaining family consent and (2) advances in diagnostic technologies, which are increasingly thought to obviate the need for autopsy. 8 Autopsy data demonstrate that the latter perception is simply incorrect. 9 Commonly cited reasons for declining consent rates for autopsy include concerns about delays in funeral services, negative perceptions by relatives, a lack of appreciable benefits, and the desire to maintain dignity after death. 8 These difficulties are challenging to overcome, but are not insurmountable. This case suggests the importance of communicating effectively the intent and nature of the autopsy. Using the concept of “the autopsy as a gift” highlighted its value to both family members and trusted clinicians, casting the autopsy in a much more positive light.
Conveying findings
The current body of literature on medical autopsies focuses on their decline, and juxtaposes this fact with their persistent importance in the face of diagnostic uncertainty. Very little mention is made, however, of how we can (and should) most effectively convey these important findings to family members. Some data suggest that many families never receive autopsy results. 10 Other evidence supports the notion that current modalities of communication often fall short. 11
In a retrospective telephone survey of next-of-kin, researchers found that 32% of family members were unaware of the purpose for the autopsy. 11 Only about half of participants had some sort of discussion of results with a medical professional. Roughly one third were dissatisfied with the explanation they received, and most of the dissatisfaction stemmed from usage of unfamiliar medical terminology. About 20% did not receive results at all.
One particularly striking aspect of this case is the manner in which the primary care physician conveyed the autopsy findings to the sister. Rather than mailing the official autopsy report to her, he instead composed a personal thank-you letter that also served the role of a condolence letter. Most importantly, this communication translated the results into more personal terms, and put them in the context of the patient's recent history and illness trajectory. The sister felt that this personal touch made the autopsy results most useful to her, and transformed the process into something that felt valuable and special. To the contrary, the official report was less helpful to her, as she described it as too “medical,” and it was difficult to see how it might apply to or explain her brother's situation. Whether the results are shared in writing, or phone call, or through a family meeting, clinicians should employ well-described principles of effective patient–doctor communication. 12
Conclusion
A sincere acknowledgment of grief is expected and deserved by family members who have lost a loved one. Although underutilized, the medical autopsy can play an important role in the family's grieving process, particularly in those cases wherein uncertainties exist regarding the ultimate cause of a patient's suffering and death. Standard modalities of communicating autopsy results to family members are of limited success, however. As our case suggests, thanking a family for the “gift of the autopsy” and communicating the findings in words with meaningful interpretations can be much more powerful, and indeed may prove transformative in the grieving process.
Footnotes
Author Disclosure Statement
No competing financial interests exist.