The living should get hospice care too, not just the dying
Gloria Foster wasn’t ready for hospice, even though, with a prognosis of less than six months to live, she qualified for it. She was debilitated by diabetes and congestive heart failure and was living with both a pacemaker and a device to help pump blood from her heart to the rest of her body. She also was tethered to an oxygen tank.
But Foster didn’t want to enter hospice, if, as is normally required by Medicare, she would have had to forgo treatments that might, against all odds, reverse the course of her disease.
“Why did I need hospice?” Foster, 73, asked in a phone interview recently from the home she shares with a grandson in Asbury Park, New Jersey. “Hospice is more or less when you’re ready to die. I just wanted to work my way back to doing as much as I could.”
But under a Medicare pilot program that began in 2016, Foster was able, for a time, to receive home care generally available only to hospice patients. Unlike hospice rules that normally govern Medicare, the public health plan for seniors, she wasn’t required to give up treatments for her terminal health conditions.
Still alive long beyond her prognosis, Foster credits the program with stopping her frequent hospitalizations, improving her mobility and greatly boosting her spirits.
It ended for her in December 2019. “When it came to an end, I was very upset,” she said of the at-home services. “I cried, as a matter of fact.” She said she’s been hospitalized six times since then.
An independent evaluation of the five-year pilot — the Medicare Care Choices Model — recently provided its most robust data so far: participants were able to stay out of the hospital and live longer at home than a comparison group, while also saving Medicare money.
The results were so encouraging that many who work in palliative and hospice care think the study’s conclusions will lead to some of the most important policy changes ever undertaken in the field: delivering a raft of traditional hospice and palliative care services to millions more Americans struggling with debilitating chronic disease, whether imminently terminal or not.
When Congress created a Medicare hospice benefit in 1982, lawmakers and advocates mainly were focused on cancer.
Hospice care was seen as an alternative to heroic but often agonizing measures to keep people alive. But since 1982, cancer treatments have dramatically improved, while higher percentages of Americans are dying of diseases with less predictable timetables.
Many advocates and providers think other patients with serious but not necessarily terminal conditions would benefit from a full array of palliative care services delivered in the home. The goals of both palliative and hospice care are to relieve symptoms and align medical care with the patient’s wishes and values. The main difference is the terminal prognosis in hospice.
“Patients should not have to pick Column A or Column B at the end of their lives,” said Dr. Marianne Holler, chief medical officer at the VNA Health Group, which participated in the Medicare pilot. Foster was one of the group’s patients.
CMS said it plans to issue a final report on the Medicare pilot program early next year. Holler and other providers said the pilot’s results demonstrate the cost-effectiveness of hospice care and argue for rules changes on eligibility and reimbursement.
Among the findings: • Compared with a control group not enrolled in the pilot, participants required less intensive medical interventions. For example, they had 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays. They also spent 38% fewer days in an inpatient intensive care unit and 30% fewer days in other inpatient hospital units.
• A large majority of participants — 83% — made the transition to the traditional Medicare hospice benefit. Participants were nearly 30% more likely than nonparticipants to elect the Medicare hospice benefit before death.
• Participants were less likely to receive aggressive life-prolonging treatments in the last 30 days of life than their counterparts. They also were able to spend about six more days at home than those in the comparison group.
• As a result, Medicare expenditures for participants were 17% lower than for nonparticipants. The savings were even greater for those who lived less than six months after entering the pilot.
“When you give people more choice and greater freedom to make choices in their best interests, they make decisions that are better for them in terms of quality of care, but better for the country in terms of costs,” said Edo Banach, president of the National Hospital and Palliative Care Organization. “The demo worked.”
Before she joined the pilot in 2017, Shirley Klionsky, 91, of Marlboro, New Jersey, recalled, “It was hard. Something was always going wrong, and I was always going to the hospital.”
That ended during the pilot, thanks to the hospice team’s weekly visits and monitoring of her advanced lung and heart disease. She wouldn’t have entered the program if it had meant giving up the treatments for her disease. Hospice wasn’t for her.
“That would have meant dying,” she insisted, “and I said no to that.”