The for-profit hospice industry has grown, allowing more Americans to die at home. But few family members realize that "hospice care" still means they'll do most of the physical and emotional work. (Maria Fabrizio for WPLN)This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.
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23, 2020
“I’m not anti-hospice at all,” said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother.
“But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”
Surveys show dying at home is what most Americans say they want. But it’s “not all it’s cracked up to be,” said Johnston, a caregiver advocate and writer from Atlanta.
She wrote an essay about her frustrations with the way hospice care often works in the United States. Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She said that during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
According to a recent Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to die at home. And that’s the direction the health care system is moving, as part of an effort to avoid unnecessary and expensive treatment at the end of life. (Kaiser Health News is an editorially independent program of the foundation.)
The home hospice movement has been great for patients and many patients are thrilled with the care they get, said Dr. Parul Goyal, a palliative care physician with Vanderbilt Health.
“I do think that when they are at home, they are in a peaceful environment,” Goyal said. “It is comfortable for them. But,” she noted, “it may not be comfortable for family members watching them taking their last breath.”
When it comes to where we die, the US has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.
Hospice care is usually offered in the home, or sometimes in a nursing home. Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care. For example, one intimate task in particular — trying to get her mom’s bowels moving — changed Joy Johnston’s view of what hospice really means. Constipation plagues many dying patients.
“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she said. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”
Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, said Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.
“Imagine if you’re the caregiver, and that you’re in the house,” Teno said. “It’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
That’s exactly what happened with Teno’s mother.
“While it was difficult for me to witness, I knew what to do,” she said.
In contrast, Teno said, in her father’s final hours, he was admitted to a hospice residence.
Such residences often resemble a nursing home, with private rooms where family and friends can come and go and with round-the-clock medical attention just down the hall.
Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she said. Patients have to be in bad shape for Medicare to pay the higher inpatient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.
Hospice care is a lucrative business. It is now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general — mostly because such facilities aren’t profitable enough.
Joe Shega is chief medical officer at the for-profit VITAS Healthcare, the largest hospice company in the US He insists it is the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model.
“Our focus is on what patients want, and 85 to 90% want to be at home,” Shega said. “So, our focus is building programs that help them be there.”
For many families, making hospice work at home means hiring extra help.
On the day I visit her home outside Nashville, hospice patient Jean McCasland is at the kitchen table refusing to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.
“If you don’t, she will just spit them out,” Velez said.
Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get a break each day. When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.
“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John said.
But what hospice provided wasn’t enough help. So he has had to drain the couple’s retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce. According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.
Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” he said. “Because this is what they say they do.”
