Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families

(This is Part 1 of a 2-part post. This article, written by Blake Farmer, is republished from KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.)

“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 U.S. 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 U.S. 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.”

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.