Shortly after walking into the workroom on my first morning as a resident on the autopsy service, a staff member told me about a voicemail from a patient with questions about autopsy. I figured the caller was a patient’s next of kin wanting more information about our process before deciding on legal consent for a loved one, a common conversation on the autopsy service.
My colleague played the message, and I heard a soft voice asking to discuss the details of her own autopsy following her death. We sat there stunned, wondering if we had heard her correctly. Was she really calling about her own autopsy?
I called her back right away to get the full story. She explained her medical history and that she was ready to end her suffering. She was in her 70s with a long history of chronic obstructive pulmonary disease. She also shared with us that she planned to donate her brain and one lung to research and through the consenting process for that was presented with the possibility of an autopsy. “Well, what’s an autopsy?” she asked.
I answered her question and explained that an autopsy is also an incredibly powerful learning tool for trainees to learn about diseases and for physicians to understand how an intervention may or may not affect clinical outcomes in patients. She was thrilled. Not wanting to miss a chance for others to learn from her, the patient decided she wanted an autopsy.
Prior to our conversation, this patient’s encounters with the health care system were primarily through home visits with her family physician, whose detailed documentation told me not only about the patient’s suffering but also how she lived. They had met regularly in her home, every other month for years. And frequently, at the end of a progress note, one or two sentences would detail a conversation about quality of life, the burden of her illness, or her fear of becoming a burden to others. She knew that the state of Vermont allowed patients to follow a process outlined in a law known as Act 39 to legally end their own life with the assistance of a physician.
In the last few months, the patient had deteriorated clinically. She was unable to perform many of her daily activities, and shortness of breath from simply changing her posture was making self-care more of a challenge. She did not have a date for performing Act 39, but she had seen enough of where her disease was taking her. As she told her family physician, “I just want it to be ready when I’m ready.”
A couple days after our phone call, I learned that the patient had performed Act 39 and that I could expect her remains to arrive later that day. I felt numb after getting the news, and I struggled to believe that this was the person I had just talked to on the phone. The autopsy team and I even checked for a pulse at multiple anatomic sites before beginning the autopsy, something I cannot recall doing in any other case. We were playing catch-up trying to accept what the patient had made peace with long ago.
As I reflect on this case, I think about the special role of autopsy, giving us a profound and unique view of suffering and humanity. Where else might we witness the next step on a patient’s journey? Where else might a patient find meaning and purpose in allowing current and future healers to learn from what she endured? We are challenged to understand both the reason for a person’s suffering and that she was much more than a suffering person.
I also think about the amazing family physician who served this patient. She had taken so much time and care to understand her and what she did and did not want from her life. In the end, she had followed her patient’s wishes.
Finally, I wonder about those suffering who may decide that they do not wish to continue living under those circumstances. If I learned that someone suffering had taken her own life without the assistance of a physician, would I feel the same empathy I do now? Would I take the time to share my experiences and feelings about the case with others? I have not found all the answers, but I am thankful someone called with the right question.