By Thomas Goldsmith
Sixteen years ago, Tom McCann promised his wife, Kathleen, that she’d always live at home, even though dementia was gradually sapping her memory and limiting her active lifestyle.
A retired customer service manager living in Raleigh, Tom, 86, has in recent years used his anti-red-tape skills and his determined grip on her Medicare-backed hospice care to keep his promise to Kathleen, 83.
“With hospice, no matter which one you use, they’re all covered by Medicare,” McCann said.
Medicare health insurance pays for hospice, described as a “comprehensive, holistic program of care and support for terminally ill patients and their families.” For admission into a hospice program, a patient, doctor and family must agree to set aside curative treatment, and a physician needs to certify that the person is projected to die within a six-month period.
That timespan was based on Medicare hospice’s original 1980s focus on patients with cancer, heart disease or HIV-AIDS. But increasingly, the entitlement has covered people with dementia — typically older people with a disease duration that defies specific prognosis.
Today, several factors complicate hospice admissions for people with dementia. They include the unpredictability of a patient’s life span and Medicare’s strict six-month initial period for care under the program — something that can be appealed.
The every-six-month recertification is also designed — in part — to combat fraud. Combined, these elements can result in:
- Lower levels of hospice use by people with dementia than by patients near death from other diseases, according to a new study led by a researcher based at North Carolina’s RTI International;
- A bureaucratic push for repeated recertifications for those who outlive the six-month guideline; and
- “Live discharge” or “kicking off” of as many as one in five hospice clients whose lifespan goes past the limit, according to additional research.
Kathleen McCann was certified for hospice three years ago, when a major skin ulcer appeared to threaten her life. But as her initial six-month certification period neared an end, a seemingly positive development threatened to end the help from health care professionals that hospice had brought the couple.
“They said she wasn’t deteriorating and therefore they sent me a notice that said, ‘We have to take her off of hospice,’” Tom McCann said on the phone recently.
A fraud-fighting focus on hospice use
McCann was told that he could appeal that decision.
“You don’t appeal it to the hospice company. You will appeal it to an arbiter, and the arbiter is someone who really is looking to be sure that Medicare is not being taken,” he explained. “I sent him a page and a half of ‘why not?’ And they came back and they said, ‘Yes, she should be on hospice.’”
Official concern about fraudulent billing in hospice is long-standing; audits of multiple hospices based in Florida in the 1990s and early 2000s found millions in fraudulent claims. More recently, a 2018 inspector general’s report found that providers were improperly billing hundreds of millions of dollars in fees — much of it to Medicare.
Late last year, four U.S. senators asked the Centers for Medicare and Medicaid Services to investigate instances of fraud by hospice providers.
‘Difficult to make the decision to enroll’
McCann said he could see that his wife’s hospice providers were carefully documenting her progress, or lack thereof.
“And [they] all are very sensitive to the fact that they could be audited, and if they’re not playing by the rules, then they could be really severely penalized,” he said.
Requirements for strict record keeping and typical adherence to the initial six-month term for hospice care have led to some of the consequences outlined in the new academic study conducted by RTI, led by researcher Ila Hughes Broyles of RTI’s Center for Healthcare Quality and Outcomes.
Among the paper’s detailed findings:
- People with dementia are less likely to make use of hospice care while dying than those near death from heart disease, cancer and other more predictable causes, and
- People with dementia who are approaching death lose the ability to walk, eat or perform other vital activities almost a year sooner than people dying of other causes.
Those findings were greeted as sad, but true, by clients, academics and practitioners involved with North Carolina hospices.
“I think the challenge for doctors who are trying to decide if someone is hospice-eligible is that people with dementia look like they’re near the end of life for much longer than people with other illnesses,” Broyles said in a recent Zoom interview. “So it can be difficult to make the decision to enroll someone in hospice.”
Broyles and colleagues looked at four years of data from the Health and Retirement Study, a long-term data collection effort based at the University of Michigan that links information about patients with Medicare claims data. Broyles looked at data from more than 5,000 case histories of people who had died. The records determined the levels of care that patients nearing death had received from health care professionals, including hospices, hospitals, clinician offices, suppliers of durable medical equipment, home health agencies, emergency departments and skilled nursing facilities.
“We limited it to people who died, and we looked backwards from their death for the last four years,” Broyles said. “So it’s comparing people who have some kind of terminal illness or something that causes them to die. If you have dementia, our study would suggest you’re less likely to receive certain kinds of health care in the last months of your life compared to other types of illnesses.”
Katherine McCann, like most hospice patients, lives at home. Since her initial six-month term, Tom has had to make sure, with the help of hospice professionals, that she is recertified every three months for continuing care. Otherwise, the consequences could be dire.
Discharging people can be troublesome
A separate study found that as many as one in five hospice patients is discharged or, in lay terms, “kicked off” of hospice because they are not measurably getting worse or because they return to receiving acute care. That means that they have chosen to resume treatment for cancer, heart disease or any condition for which they had foregone attempts at a cure.
Another set of researchers, which included sociologist David J. Russell from Appalachian State University, found that Black hospice beneficiaries with dementia were nearly two and a half times more likely to go through live discharge than white patients with the same condition, and parallel Hispanic subjects were about three times as likely.
“Live discharge for extended prognosis might sound like a positive outcome and is sometimes referred euphemistically as ‘graduating’ from hospice,” wrote the authors of the separate 2021 paper in the Journal of the American Geriatric Society. “But this situation is not like a Hollywood movie where a person is miraculously cured and goes on to live happily ever after.”
The situations of people discharged from hospice can be grim for those with dementia, when patients choose or are compelled to give up their hospice benefits. A discharge means the loss of everything from occasional home health aide service that allows the family caregiver a break, to hospital beds and other equipment, to access to a physician who’s monitoring the patient’s condition closely.
Ironically, it’s access to these extra bits of care that keep patients alive and healthy long enough to be discharged.
No hospice care by Medicare Advantage
The challenges associated with a hospice “graduation” can be especially true in the cases of people who have been insured by privately run Medicare Advantage plans, which do not include hospice care. Medicare Advantage enrollees are not denied hospice, but they must switch to the traditional, government-managed Medicare program for those services.
There’s controversy over the relative merits of Medicare Advantage versus traditional Medicare, but a patient’s switch to the traditional model to receive hospice care provides significant benefits. In Medicare-approved hospice, beneficiaries will receive care from a multidisciplinary team and coordinated plans to receive prescription medicines, durable medical equipment such as wheelchairs, and other supplies.
If patients continue instead to pay Medicare Advantage premiums and want treatment for their terminal illness, the patients or those looking after them have to renew prescription drugs with different doctors, find someone to replace the certified nursing assistant who came via hospice, secure a new source for durable medical equipment and do without the care team, family support and spiritual guidance they had been receiving.
According to the authors of the 2021 report of live discharge from hospice, the changes require caregivers to use “substantial additional logistical and emotional energy when they are at their most depleted.”
Red tape challenges nonprofit hospice
Dr. Laura Patel, chief medical officer at the nonprofit North Carolina hospice provider Transitions Lifecare, encounters the lower levels of use by patients with dementia outlined in the RTI study and the situations of hospice patients discharged under Medicare guidelines.
“It’s a challenge for hospices like ours when, increasingly, there’s so much regulatory scrutiny that people are afraid to take folks (with dementia) unless they’re really advanced,” Patel said. “We’re not going to take them or we take them and then they end up having to be discharged off of hospice, which is really agonizing for everyone involved.”
Tim Rogers is president of the Association of Home and Hospice Care of North Carolina, a trade group. He keeps up with these life-and-death issues as a past caregiver for his own parents in hospice and as a professional who has spent 31 years in the home- and hospice-care sector.
“We’ve been aware of this disparity not only in dementia, but with some other similar illnesses — Parkinson’s, Huntington’s and some others,” Rogers said in a phone interview. “We know that dementia doesn’t always follow a predictable illness trajectory. And you know as well as I do, physicians can’t predict death.”
‘Yes, they are dying’
Like Rogers, Patel speaks frankly about death — something that many people have problems addressing until it’s close at hand. Coupled with the uncomfortable lived realities of dementia, the subject of lifespan gets harder, even in the context of hospice care.
“The model of hospice care as it was set up, in the way that it’s paid for, wasn’t with the expectation that there were going to be these huge numbers of people with dementia, who are going to live for a long time, needing support,” Patel said.
“Yes, they are dying. They’re not going to get better from their disease. They’re progressively more debilitated.”
Given the issues reported in academia and seen in North Carolina health care facilities, there’s an emerging opinion that people with dementia who are approaching death should have some sort of third option, beyond hospice or conventional treatment.
“It’s concerning that people with dementia are less likely to receive the supportive care focused on symptom relief that hospice can provide in their last months of life,” researcher Broyles said. “As people consider models of care that target people with dementia, those models of care should consider the very long course of illness and the sustained burden of dementia for patients and their caregivers, particularly at the end of their life.
“I think policy makers should consider models of end of life care that can match the sustained needs of people at the end of life.”
Patel agreed and offered thoughts on possible new approaches, including the use of palliative care for patients with dementia as part of a continuum of care.
“I would love for there to be another way to take care of patients with dementia, in addition to hospice,” she said. “I do think they still need hospice care, but maybe they need more care sooner all along the way.
“And they need to not have to be discharged off of hospice, because that’s really very painful.”