Bioethics Forum Essay

Is Five Hours Too Short to Say Goodbye? My Dad’s Rapid Autopsy

My sister called: “Get the orange card out of my wallet on the table. We need to call the study people.”

In July, we got the news – Dad’s colon cancer was back. He had a six-month prognosis, so we began the planning: a big 95thbirthday party, caregiving schedule, trips to the doctor. Since I am the only sibling living out of town, I planned more frequent, then monthly, and finally every-two-week trips from Atlanta to Seattle. My dad had always been involved in research, part of a decades-long longitudinal study to gauge the effects of aging, so it was no surprise that he signed up for an Alzheimer’s study that involved a rapid autopsy and brain harvest.

My brother-in law joked that he would ruin the curve, since he continued to be on boards and committees throughout his 90s. For me, a bioethicist who helps draft post-mortem harvest guidelines, now it was my dad, my family. My father was dying and all those worries and questions loomed –  would I get there at the right time, would we say goodbye as I hoped we would, what would we share in those last few months, how would the end be, what would I feel like when the body was whisked away?  It was a tearful, stressful, six months.

We were fortunate that his death came quickly at the end – he was bedridden for only three days. And I was able to arrive in time to be by his side the night before he died.

There were choices along the way. Should we try to treat the cancer? Fortunately, his oncologist carefully explained how the risks outweighed the benefits given his health history, so he did not make that choice. When to enter hospice? Once again the oncologist was very helpful. At her urging, he entered hospice in October, since studies showed that the longer you were in hospice the longer you lived, and the better your quality of life.

The hospice team was very aggressive in managing his comfort, ordering palliative radiation for a painful tumor in his neck a few months before he died. A little surprisingly, the hospice nurse did suggest we admit him for rehydration during those last three days. Wisely, my father declined, a decision supported by the rest of the family, and we were not sucked into an institutional setting, or the temptation to “just try this one thing.”

His death coming so quickly did take us by surprise. He started morphine for air hunger late in the evening of the second day being bed-ridden and died the next morning the cause of death was believed to be a heart attack. My brother and sister-in-law were with him and sent out the text to the whole extended clan: “Dad passed away at 7:29.”  I was staying at my sister’s. She immediately left for his place, with me following a few minutes behind.  My oldest sister would need a few hours to catch a ferry and get there.

While I was packing up to hurry over, my younger sister called for the information on the orange card. The hospice nurse needed the information. The call was made – we had five hours. Five hours? So short – the brain would have to be harvested by 12:29.  My oldest sister had to get there. How about pick up at 11:30 am?  Will that work? Yes, the transport team will be there.

Now what – three short hours to say good-bye.  Yet those three hours stretched into timelessness. My older sister arrived at 10. We each had time alone with the body. We each said goodbye. It was now shortly after 10 so we called the transport team to come earlier, at 11. We gathered around the body, joined hands to surround him with our love one last time, and said my dad’s favorite grace: “Well sir, we are all together again. We have our health and the rest is up to you.”  My mind smiled at the incongruity of the words, but it was exactly what my dad would have wanted us to do. We were done.  And it wasn’t 11 yet.

The transport team arrived, somber, respectful, in black suits. The paperwork was filled out and the body was transferred to the gurney and maneuvered out the door. The condominium manager asked us to transfer the body out of the building via the side door instead of the front door. The hospice nurse insisted that she accompany the body to make sure it was treated respectfully.  My brother’s words summed up how we felt as our dad’s body went from warm to cold: “It was time for him to go.”

My mother had been part of the same program, but because she died in the hospital, the rapid autopsy logistics were handled without us. Unfortunately, in my dad’s grief, some of the paperwork was filled out incorrectly and we lost her remains for two weeks. After we told the hospice nurse this story, she cited all the steps in the process and requested that study personnel call us as each step was finished. They each complied and this time we always knew where the remains were, though, you had to laugh, since my dad’s name is Aubrey, sometimes a feminine name, the callers would inform us about the whereabouts of “our mother’s remains.” It still was added comfort to know where his remains were in the process from autopsy room, to memorial group, to cremation, to pick-up.

As an ethicist specializing in part in post-mortem research, I always wondered about several details of the process. Was the timeframe for “rapid autopsy” too short for families? It may be for some, but for my clan it was perfect.  Nor is warm autopsy the right term. As others have suggested, it was not, since the lack of warmth was just what made it seem so right for the body to leave.  Would this process be as respectful as all our guidelines insist it be? It was for us. It was just right that the “transport guy and gal” dressed like funeral directors and that each movement of the body was done somberly and respectfully.  The polite phone calls, prefaced by condolences, assured us his remains were being tracked. The presence of the hospice nurse was a key factor in making the process work so well for us. She handled the initial phone calls, shepherded the body and listened to our concerns that Dad’s remains might get lost as had our mom’s.

Finally, just as I had argued previously from my academically removed position, the peace that comes from honoring my dad’s autonomous wishes was deep and satisfying.  Equally satisfying was the sense that he was helping advance medical science and future people.  He wanted this. We could do it. What an opportunity for my dad and family to continue to make a contribution. My hope is that other families will make this choice. It was certainly right for us.

Acknowledgement: I want to thank my sisters, brother, brothers-in-law, husband and children, for their edits and agreement to tell this intimate family story.

Rebecca D. Pentz is a professor of research ethics at Emory University School of Medicine.

Posted by Susan Gilbert at 05/01/2013 10:53:34 AM |

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