Dignity in Dying

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Few anticipate the bureaucratic nightmare that ensues after a death at home.

By Kent Sepkowitz | NEWSWEEK

Published Sep 26, 2009

From the magazine issue dated Oct 5, 2009

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As a doctor at a cancer hospital, I'm often asked about death—not the spiritual side of it, but the practical. Specifically, people ask me if it is better to die in a hospital or at home. Until recently I had always voted for death at home, given its promise of relative serenity. I still think it's better. But a friend's recent experience with his elderly father reminded me that hospitals, despite their noise and hurry, still do a few things well in those difficult last moments.

When my good friend's father died at home, it was as orderly and calm as could be hoped for. Yet what was unanticipated was the chaos that followed soon thereafter, an odd mix of sober adult heartbreak and the darkly comic. How did the expected death of a nonagenarian result in such commotion? Because few anticipate the bureaucratic adventure that ensues after a death at home. Hospitals and hospices, with their legendary capacity for completing forms, handle the task with chilly efficiency. But without their administrative help, doing it yourself isn't so easy.

Long gone are the days of the cowboy gently closing his slain buddy's eyes and moving on. When someone dies at home, a licensed professional must determine that the person is indeed dead. This should be worked out in advance with the doctor, but we have a way of disappearing at crucial moments. If this happens, the only option is to do what my friend did and call an ambulance—for a dead person. There are other annoyances: the death certificate must be completed in black ink (using only certain approved diagnoses), an undertaker needs to be selected, and law enforcement must be called to establish that no foul play occurred. As happened with my friend, officers may arrive ready for trouble—suspects, motives—and meet only a saddened family.

Cutting the cost of health care without cutting its quality is the central issue in the reform debate. Since a large proportion of Medicare dollars are spent on patients in the last months of life, savings could come from facilitating the wishes of those who choose to die at home. This is best accomplished with the active support of hospice care rather than the (well-intentioned) path my friend took. This approach would be less expensive than admitting a loved one to a hospital—and would assure tranquility for the person dying and dignity for the family that remains.

Sepkowitz is an infectious-disease specialist at Memorial Sloan-Kettering Cancer Center in New York City.

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Posted By: Kathleen Vallee Stein @ 10/08/2009 1:48:30 PM

When the radiation treatments my dad was getting to treat the Non-Hodgkin's lymphoma were killing him faster than the cancer we took him home. He lived for 29 days at home under the care of my sister and myself. During that time he put his financial affairs in order, reconciled with two of his estranged children, made sure his wife would be cared for and left this world in peace. We were greatly assisted by home health aides and hospice personnel. Although it was challenging, hectic and scary, neither of us regret it and know we did the right thing. My book that details our struggle is entitled: In Sunshine and in Shadow.
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Posted By: cendralynn @ 10/01/2009 5:44:25 PM

Home death and green burial can be arranged in advance if such a case as this one. There was no need to call an ambulance. He simply should have waited for the doctor's return. There is no rush once someone is dead. The body will cause no problems for three days if it is kept reasonably cool. Instructions for home death can be found on the internet.

There is no need for a funeral director to be involved, though in some states they have made it the law that they must also sign the death certificate. These laws need to be changed. Not everyone wishes to work with a funeral service. Simple cremation or donation to a medical school are alternatives.

In the case of sudden death, none of the above would probably arise. So the discussion about where to die becomes moot.
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Posted By: afisher @ 10/01/2009 3:11:30 PM

I understand the physicians dilema, but one would think that if a physician was talking to an adult (not the patient), they would take the time to ennuciate the consequences of that decision. Gee, with this magic box called a computer, one might think that a compassionate oncologist could have someone in their office write some information down regarding all the steps that need to occur after a patient dies at home. If that information was available to the care giver / family member before the individuals death (at home), the hub-bub would be down to a few phone calls.

Anecdotal info: When my father died at home, the sheriff did come and asked me for time of death. As I wasn't "exactly"sure, I told him that, he said pick a time, I responded 2:12 and he said he couldn't write THAT TIME down, so we settled on 2:15!

I understand the physicians discussion, but dying at a hospital is no less traumatic to the surviving family than dying at home, these family members just need some information beforehand.