Nashville NPR addresses end-of-life costs and services

Nashville public radio is running a series on The Cost of Dying. These two article summaries appeared in Hospice News Today (10/31/19) addressing patients with dementia (long length of stay; fewer services) and the lack of hospice inpatient services. Both articles raise interesting points for hospices to consider.

The Cost Of Dying—Hospice Industry’s Most Profitable Patients Get The Least Help
Second of a Series
Nashville Public Radio/WPLN-FM (Nashville)
October 30, 2019

Hospice care has a new face: Dementia now accounts for more Medicare spending on end-of-life services than any other disease. And a WPLN investigation finds that the patients with the longest stays tend to get the least help. … The problem is that hospice wasn’t designed for dementia patients, even though they now represent the largest cost to Medicare. And according to the Medicare Payment Advisory Commission, the only reason the average length of hospice stay increases each year is because patients with diseases like dementia are choosing to start hospice even earlier. But the government benefit was established in 1983 with cancer patients in mind and primarily focuses on relieving pain. So hospice agencies don’t have to provide the kind of caregiving that people with dementia really need. “Certainly, there is some disconnect,” says Pedro Gozalo at Brown University. He’s studied hospice since it was a niche part of health care. Now it’s a $19 billion industry dominated by for-profit companies who tend to have a much larger percentage of dementia patients. … Gozalo’s research shows that in many cases, especially patients in nursing homes, it’s not meeting that money-saving objective anymore. The original thinking was that some patients would require more attention than others, but policy makers agreed on a flat daily rate. Gozalo says dementia and other terminal illnesses with variable and often lengthy timelines have exposed flaws in that formula. “That simplicity sometimes is exploited,” he says. … It’s uncertain just how many families have to hire private help. The Centers for Medicare and Medicaid Services doesn’t keep track of that datapoint. But the cost to many families is clear. But the McCaslands, like most families, have never considered whether they were getting what Medicare is paying for. John has kept a three-ring binder that holds his monthly statements but only realized what the hospice agency has been charging the government when asked to review them. “That’s $200 a day,” John said with surprise. That per diem is charged every day, even if on most days no one from the hospice agency visits. The daily rate drops closer to $150 after two months—a recent payment reform meant to discourage gaming the system—but after some quick math, John realized the payments total nearly $60,000 over the course of a year on hospice. “That’s in the neighborhood of what a facility charges,” he said. He reassessed his expectations of hospice on the spot. His hospice agency has been making twice as much a week as what he’s paid his fulltime caregiver. “I guess when you consider the amount of money that’s involved, that perhaps they would provide somebody round-the-clock,” John said. … The McCaslands’ hospice agency, a small for-profit based in Madison called Adoration, says it can’t provide more than the Medicare benefit allows, though administrator Sue Riggle says she understands how much dementia patients need the help. “I think everybody wishes we could provide the sitter service part of it,” she says. “But it’s not something that is covered by hospices.”

The Cost Of Dying—Home Is Still A Hard Place To Die
Third of a Series
Nashville Public Radio/WPLN-FM (Nashville)
October 31, 2019

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. … 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.” … 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.” … 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. … 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. … “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.” … 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.