Home hospice care demands a tremendous amount from family members, and when providers fail to adequately prepare a family to carry out those responsibilities, their loved one can wind up back where they do not want to be: the hospital, Daniela Lamas, a pulmonary and critical care physician at Brigham and Women's Hospital, writes in the New York Times' "Well."
How a home hospice patient ended up back in the ED
In "Well," Lamas tells the story of a 90-year-old cancer patient who had been resuscitated while on home hospice. The patient's children had called 911 because the system had not properly trained or prepared them for how to respond when their father's health declined.
When Lamas spoke to the patient's family, she learned that the patient had arrived home just a day earlier from "the last in a long series of hospital stays for incurable cancer … with plans to begin hospice care at home," she writes. He was weak, but his children said he'd seemed happy to be home and was able to talk.
The hospice team had stopped by the family's home after the patient arrived there, saying they'd return the next day to talk about next steps—including setting up an advance directive to make sure the patient wouldn't end up back in the hospital against his wishes, Lamas writes.
But before they could return, the patient developed trouble breathing.
At first, the children "tried to do the right thing" by calling the hospice team, Lamas writes. But as they waited, the son began to panic and called 911.
Over the phone, the 911 operator coached the son through chest compressions on his father, Lamas writes. While in the process of doing the compressions, "he felt a crunch," and "he realized his father’s ribs were breaking." But the 911 operator said this "meant that he was doing a good job," as it's a common consequence of chest compressions, Lamas writes.
When the paramedics arrived, they restarted the patient's heart, inserted a breathing tube, and took him to the ED, Lamas writes. When Lamas informed the children that their father was able to breathe only with assistance, one of them said, "He would never want that. … He didn't want to die, but he never wanted to be kept alive by machines."
At that point, Lamas explained that, if their father didn't want life-sustaining care, they could instead remove his breathing tube in the ED and allow him to pass there, quickly and comfortably.
The children all agreed.
An open apology for a failed system
Lamas then apologized to the family—because, she writes, she "wasn't sure what else to say."
Lamas writes, "I know that even in the best of circumstances, dying at home demands an incredible amount of family members, more than they expect, and surely more than doctors like me ever realize." She continues, "I simply have no idea what it must feel like to be at home watching a person you love take his last breaths. Sometimes that reality is untenable. I'm not sure it's even possible to fully ready yourself for this. Of course people get scared and plans fail."
But, Lamas writes, this is where the hospice system should provide support—and in the case of this patient and his family, it failed.
"We could have made sure you filled out an advance directive before you left the hospital, but we didn't. You trusted us to make a safe plan for your father, but you were left to watch him struggle without knowing how to help," Lamas writes. "You hadn't yet learned that you could have given him medications to ease his breathing, to keep him calm. You didn't have time to realize that calling 911 would start a cascade of interventions that your father had never wanted."
As a result, Lamas writes, the patient's family had to live with knowing that their father "died in our [ED], behind a curtain, in a room that was not his own."
She concludes, "My apology can't take away those memories. But I can hope that when you look back on your father's death, you will also see this: You did everything you could. We're the ones who must do better" (Lamas, "Well," New York Times, 10/17/18).
Download URMC's end-of-life conversation prompts
When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.
Download URMC's conversation prompts to start improving end-of-life care for patients.