The daughter of one of my long-time patients recently pulled me aside to ask, uncomfortably, “What do I do if … when … my mother dies at home?” Her mother was 90 and had been hospitalized, again, for difficulty breathing. We were able to get her back home and, thankfully, avoid the intensive care unit. She’d already signed a do-not-resuscitate order and had specified that she did not want intubation.
It was clear to all parties involved that she wanted to die at home, surrounded by her abundant and doting family. But what would actually happen when that moment came?
Credit Joon Park
It wasn’t until the daughter asked me that I realized that I didn’t actually know. Were you supposed to call 911? Or would that bring on a rush of paramedics and a battle to prevent unnecessary “resuscitation?” We’ve all heard horror stories of peaceful home deaths turned into anguish as the medical juggernaut kicks into gear.
That evening I leafed through last week’s issue of JAMA, which, unexpectedly, turned out to be entirely devoted to death, dying and the end of life. The issue was packed with intriguing articles that debated physician-assisted suicide, end-of-life care, statistics about death in different countries, the role of the I.C.U. But what caught my eye was a research letter tucked at the end, with the very medical-journal title of “Association of Occupation as a Physician With Likelihood of Dying in a Hospital.” Written by colleagues of mine at New York University School of Medicine, the study tried to elucidate whether doctors died predominantly at home or predominantly in the hospital.
Doctors, it turns out, aren’t much different from everyone else: 63 percent of them die in some sort of medical facility. This is a bit lower than the general public (72 percent), though roughly the same as others working in health care or with similar levels of education.
This statistic certainly surprised me. Most doctors I know have been seared by the experience of witnessing the modern way of death in the hospital. With improvement in care, some deaths can be peaceful, but the vast majority are anything but. Most of us came out of residency committed to holing up at home with a morphine drip when the end is approaching, barricading the door against the medical profession.
Ken Murray, a physician from California, brought this paradox to public attention in 2011 when he published a much-discussed essay, “How Doctors Die.” Because of their experience in hospitals, doctors, he argued, largely avoid the medicalized death that their patients regrettably suffer through. So it was interesting to see that the statistics do not bear out the word on the street.
One possible explanation is that families today simply aren’t able to offer the Norman Rockwell-esque death at home. There aren’t a lot of stay-at-home family members any more who can offer the selfless and arduous work needed to care for dying patients. Even families with excellent health insurance quickly learn that they have to fill in the cracks, providing care on nights, weekends, holidays.
Or maybe, as the lead author of the N.Y.U. study, Dr. Saul Blecker, noted, “it’s just really hard to avoid the medical complex at the end of life.” Even if someone is not dying in an acute-care hospital, he or she might end up in a nursing facility or other institution.
I pondered my patient’s situation. She has a large and committed family and was being well cared for at home. But they weren’t sure what to do when the death actually occurred, so I did more research.
Legally, the family would need someone to pronounce death. I assured the family that they could call me at any time to do this, though I might not be available right away if I had patients in the hospital to attend to or happened to be out of town. If they did need to call 911, I told them their mother’s D.N.R. notice needed to be firmly in hand to prevent unnecessary medical intervention.
If they were part of a hospice program, a hospice nurse would be available to pronounce death. This is in the line of duty for hospice programs, so most have a rotating pool of people available to do it. The daughter said she would talk about that with her mother, who didn’t really want anyone but family members in the home. I assured her that there were palliative care options that would not feel intrusive.
I also suggested that, uncomfortable as it might feel, she select a funeral home and have a conversation with the funeral director now, while things were stable. The funeral home sends people to remove the body, and a conversation now would spare scrambling at a moment when logistics might feel overwhelming.
These were difficult subjects to broach, but they were most surely signs of love, of dedicated family members doing the hard work to ensure that their mother would experience the most peaceful death possible.
I don’t remember which of us shifted the conversation, but soon the daughter and I were talking about our own situations. We realized that we each needed to think more fully about the choices we would make for ourselves and to let our families know our own wishes.
I’ve filled out my health care proxy and detailed my desires as stringently as I can. But I can’t predict the future. My children, whose biggest concerns at the moment are the school play and algebra homework, are likely to be the ones who will be dealing with this. Who knows where they will be living, or what their circumstances will be. My desire to quietly slip away might not be as guaranteed as I’d like.
I made sure that my patient’s daughter had my cellphone number and reminded her that she could call me in the middle of the night if needed. And then I went home to help with the math homework. “You’d better be nice to us,” my kids always say with a sly grin when they want to stay up late or get extra dessert. “Remember, we’re the ones who will pick your nursing home.” They aren’t kidding.
Danielle Ofri’s newest book is What Doctors Feel: How Emotions Affect the Practice of Medicine. She is a physician at Bellevue Hospital and an associate professor of medicine at N.Y.U. School of Medicine, as well as editor-in-chief of the Bellevue Literary Review. She spoke on Deconstructing Our Perception of Perfection at TEDMED.