Americans would rather die at home than in a hospital. Survey data makes it very clear, and the thriving hospice industry is making that hope a reality.
But keeping patients out of the hospital at the end of life is not always the beautiful death families envision.
That’s Joy Johnston’s take after relocating to New Mexico in 2015 to care for her mother dying of cancer. She wrote an essay about the experience, “Why Dying At Home Is Not All It’s Cracked Up To Be.”
“It may take a village to raise a child, but you may discover a ghost town when it comes to the dying,” she writes.
For Johnston, who’s a journalist from Atlanta, one intimate task tipped the scales — trying to get her mother’s bowels moving.
Constipation is a regular side effect of the morphine most hospice patients take to help with pain and shortness of breath. The so-called “comfort kit” caregivers receive from their hospice agencies include suppositories.
“So, I had to do that. And yeah, that was the lowest point. And I’m sure it was the lowest point for my mother as well,” she says. “And it didn’t work.”
Johnston spent the last two weeks of her mother’s life at her side. She felt more like a nurse than a daughter.
Johnston says she’s not “anti-hospice” and expects she’d still prefer to die in her own home than a hospital.
“But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”
Patient Vs. Caregiver
Dying at home is the direction patients are collectively pushed by the health care system hoping to avoid unnecessary and expensive treatment at the end of life. And according a recent Kaiser Family Foundation poll, seven in 10 Americans would prefer to die at home.
The home hospice movement has been great for patients, but not always for the caregivers, says Vanderbilt palliative care physician Parul Goyal.
“I do think that when they are at home, they are in a peaceful environment,” she says. “It is comfortable for them. But it may not be comfortable for family members watching them taking their last breath.”
Goyal says caregivers often feel unequipped as patients gulp for oxygen, called “air hunger,” or groan and gurgle through what’s known as the “death rattle.”
There also can be startling amounts of blood. Goyal recommends dark towels and sheets as to limit the vivid contrast of blood stains.
The family is usually tasked with administering morphine. One caregiver in Texas tells WPLN she feared she had overdosed her father at one point. Another in Texas confessed she attempted — unsuccessfully — to overdose her mother after two long years on home hospice.
It’s all a lot to ask, says Joan Teno, a physician and leading researcher on the hospice industry at Oregon Health and Science University. She suggests imagining it’s the middle of the night and all of a sudden the patient has a grand mal seizure, as her own mother did.
“It was difficult for me to witness, but I knew what to do,” she says.
Teno says her father, who passed away earlier this year, opted to die in a hospice residence, which she calls a “godsend.”
Some see hospice facilities as the best middle ground, because it’s a comfortable setting that still provides round-the-clock medical attention.
Here’s the rub: Most patients never get there. Even for patients being served by hospice agencies with their own facilities, it’s often not practical to move them once they’re close to death.
Medicare data shows just one in 10 patients die in an in-patient hospice unit, down from two in 10 a decade ago.
And, hospice facilities are becoming increasingly rare. As the industry is taken over by investor-owned companies, they’re not building free-standing units because they’re not as profitable as caring for patients at home, which is what people say they want anyway.
“Our focus is on what patients want, and 85 to 90 percent want to be at home,” says Joe Shega, chief medical officer at Vitas, the largest hospice company in the country. “So, our focus is building programs that help them be there.”
‘I Will Come Back And I Will Haunt You’
Some of those who’ve gone through the experience with a loved one at home say it’s changed what they want for themselves.
A photograph sits on the table of Coneigh Sea’s entryway in Murfreesboro. She’s on the hip of her husband — both smiling. He died of prostate cancer in their bedroom.
Enough time has passed that she sees the experience more clearly than when she was in the fog of managing his medication and bodily fluids, mostly by herself.
“It became just a burden,” she says. “And for me to say that, there’s that guilt. But I know that it was a burden. It was a burden that I lovingly did.”
Sea says she was scarred by the experience. And she recently sat down her grown children to make sure they don’t do the same for her.
“I told my family, if there is such a thing, I will come back and I will haunt you. Don’t you do that.”
But for those looking for alternatives to dying at home, finding a hospice residence is increasingly difficult. The more likely outcome would be passing away in a hospital, which is precisely what hospice was meant to avoid.
Blake Farmer’s reporting on end-of-life care is part of a reporting fellowship on Health Care Performance, sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund.