Research shows the majority of Americans want to die at home, but the burden on family caregivers is often more than people realize, Blake Farmer reports for Nashville Public Radio.

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The desire to die at home

A recent poll from the Kaiser Family Foundation found that 70% of Americans say they'd prefer to die at home, and a recent study found that homes are now the most common place to die. While hospice care can be provided at a nursing home, it also can be provided in patients' or their caregivers' homes, and it's become a popular option for Medicare beneficiaries.

Still, Parul Goyal, a palliative care physician at Vanderbilt Health, said that while she believes home hospice care has been great for patients, it can be difficult for families. "I do think that when they are at home, they are in a peaceful environment. It is comfortable for them," she said. "But it may not be comfortable for family members watching them taking their last breath."

The limits of home hospice care

Typically, hospice care agencies work "in an advisory role and from a distance," Farmer reports. They usually provide a hospital bed, an oxygen machine, a wheelchair, or whatever equipment the patient may need, as well as prescriptions that arrive at the house to treat pain and anxiety.

However, personal help can be hard to find, Farmer reports. Hospices can provide home health aides and homemaker services as part of their hospice benefits, according to Medicare, but Medicare data shows that a nurse or aide is typically in a patient's home for an average of roughly 30 minutes a day.

For John McCasland, the limited visits did not feel like enough support for his wife who used home hospice care while she had dementia. Instead, McCasland had to use up much of his and his wife's retirement accounts to hire a private caregiver for her. When McCasland discovered that the home hospice care agency charged Medicare $60,000 for the first year Jean used hospice care, he was shocked.

"When you consider the amount of money that's involved, perhaps they would provide somebody around the clock," he said.

Sue Riggle, administrator for Adoration, the hospice agency used by the McCaslands, said her company is small and can't provide services beyond what Medicare pays for.

"I think everybody wishes we could provide the sitter-service part of it," she said. "But it's not something that is covered by hospices."

The emotional toll on caregivers

As a result, much of the burden for caring for hospice patients falls to family members and caregivers, which can be taxing, Farmer reports.

"It does take a toll" on families, according to Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital. The type of stress that comes with caring for a loved one is referred to as caregiver syndrome, Farmer reports.

"Our long-term-care system in this country is really using families—unpaid family members," Ornstein said. "That's our situation."

Joy Johnston experienced that burden taking care of her dying mother, Farmer reports. At one point, Johnston's mother was experiencing constipation, and Johnston had to help take care of it.

"It's ironically called the 'comfort care kit' that you get with home hospice. They include suppositories, and so I had to do that," Johnston 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."

Coneigh Sea, a social worker whose husband died of prostate cancer at home in 1993, said that taking care of her husband was a burden. "For me to say that—there's that guilt," she said. "It was a burden that I lovingly did."

She said she doesn't regret taking care of her husband at home, but said she doesn't want her children to bear the burden of taking care of her when she dies.

The problem is, that decision can be expensive and difficult, as it means either paying for a nursing home or dying in a hospital, Farmer reports.

"We really have to expand—in general—our approach to supporting caregivers," Ornstein said. "I think what we really need to do is be broadening the support that individuals and families can have as they're caring for individuals throughout the course of serious illness. And I think that probably speaks to the expansion of palliative care, in general" (Farmer, Nashville Public Radio/Kaiser Health News, 1/23).