Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families (Part 2)

(This is Part 2 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.)

For many families, making hospice work at home means hiring extra help.

‘I Guess I’ve Just Accepted What’s Available’

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.”

Families often don’t consider whether they’re getting their money’s worth because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he had never noticed that his agency charges nearly $200 a day, whether there is a health provider in the home that day or not.

That daily reimbursement covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John said it gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he said.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realized Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice.

Was the care his wife got worth that?

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

Sue Riggle is the administrator for the McCaslands’ hospice agency and said she understands how much help patients with dementia need. Her company is a small for-profit business called Adoration; she said the agency can’t provide more services than what Medicare pays for.

“I think everybody wishes we could provide the sitter-service part of it,” said Riggle. “But it’s not something that is covered by hospices.”

I checked in with John and Velez (Jean’s longtime private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical but often unexpected.

‘It’s A Burden I Lovingly Did’

“It does take a toll” on families, said Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term-care system in this country is really using families — unpaid family members,” she said. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to want something else for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tennessee. He died of prostate cancer in their bedroom in 1993. Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she said.

But it was a burden.

“For me to say that — there’s that guilt,” she said. “But I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience but said it is not one she wishes for her own grown children. She recently sat them down, she said, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she said with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home or dying with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid. As researchers in the field look to the future, they are calling for more palliative care, not less — and, at the same time, they are advocating for more support for the spouses, family members and friends tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein said, noting that some countries outside the U.S. pay for a wider range and longer duration of home health services.

“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,” Ornstein said.

“And I think that probably speaks to the expansion of palliative care, in general.”

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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.