A growing number of patients with various dementia-related conditions will need end-of-life care in coming years. Hospices preparing for rising demand are facing compliance challenges, as these patients often require longer hospice stays.
Patients with Alzheimer’s and other neurological degenerative disorders have health trajectories that are difficult to project, especially as they approach the end of life, according to Dr. Neha Kramer, palliative neurologist at Rush University Medical Center in Chicago.
Many of these patients could benefit from receiving hospice care sooner and longer, but regulatory requirements can make that a challenging feat for providers, she said.
“Some of the greatest challenges providing quality hospice care to these patients really starts because the Medicare guidelines and eligibility criteria for neurodegenerative diseases really leaves a lot left to be desired,” Kramer told Hospice News. “There’s a big call to reconfigure the hospice benefit so that it’s really tied into the goals and needs of these patients, rather than a prognostication piece that doesn’t feel accurate for so many conditions. They could still benefit from hospice services earlier in their disease course, and for a much longer time.”
Some of the greatest challenges providing quality hospice care to these patients really starts because the Medicare guidelines and eligibility criteria for neurodegenerative diseases really leaves a lot left to be desired.— Dr. Neha Kramer, palliative neurologist, Rush University Medical Center
Kramer is also an assistant professor at Rush University’s Department of Internal Medicine and past co-chair of the American Academy of Hospice and Palliative Medicine’s (AAHPM) Neuropalliative Special Interest Group. She co-founded the group roughly five years ago with colleagues in the subspecialty.
A wide variety of neurodegenerative and neurologic diseases exist among hospice and palliative patients.
Alzheimer’s is among the most common types of dementia in these patient populations, according to Kramer. Others include vascular dementia, Lewy body dementia (LBD) and frontotemporal dementia.
Neurodegenerative disorders like Huntington’s and Parkinson’s disease are also common, as well as related disorders like amyotrophic lateral sclerosis (ALS), multiple system atrophy (MSA) and progressive supranuclear palsy, she stated.
Seniors with Alzheimer’s and other neurological degenerative disorders will represent a larger portion of the hospice and palliative patient population in the next two decades.
About 1 in 9 seniors will have a dementia-related condition by 2050, representing roughly three-quarters (73%) of the nation’s overall aging population, according to a 2023 report from the Alzheimer’s Association.
A projected 12.7 million Americans 65 and older will have Alzheimer’s or other dementias by then, nearly double the current estimated 6.7 million seniors with these conditions, according to the report.
“With this proliferation comes an increased need for competent, high-quality hospice and palliative health care for patients with Alzheimer’s and other degenerative brain diseases,” Alzheimer’s Association researchers wrote in the report.
Current regulations around hospice eligibility are among the barriers to improving quality end-of-life care for patients with dementia-related conditions, according to Kramer.
Disease variability alongside increasing patient volume is only adding to pressures on hospices to meet unique care needs, such as longer stays that often extend beyond the six month parameters around the Medicare eligibility criteria, she said.
“Hospice has its own criteria, but these diseases don’t progress in the same linear fashion. So, they don’t really fit into that criteria,” Kramer said. “It just doesn’t accurately depict how much time a person has and doesn’t accurately affect the needs of the neurodegenerative population.”
Both policymakers and providers are recognizing potential opportunities to reform the Medicare Hospice Benefit to better meet diverse patient needs.
Extending the hospice eligibility time frame to include a one-year terminal prognosis may be a step towards improved quality for patients with longer-term illnesses like Alzheimers and other dementias, according to Keisha Mason, director of nursing at Heart’n Soul Hospice.
These patients not only often require longer hospice stays because of their diagnoses, they also have better quality outcomes when on these services for extended periods, she stated.
“We may still be seeing a decline in a hospice patient with Alzheimer’s or other dementias and degeneration for longer than six months or a year,” Mason said. “These are diagnoses that tend to have really long stays, but they’re still appropriate for hospice. If you discharge them, it would be almost unethical and a travesty to do so.”
We may still be seeing a decline in a hospice patient with Alzheimer’s or other dementias and degeneration for longer than six months or a year. If you discharge them, it would be almost unethical and a travesty to do so.— Keisha Mason, director of nursing, Heart’n Soul Hospice
Other stakeholders have argued that the prognosis requirement should be eliminated altogether.
Length of stay has been the subject of long-standing controversy in the hospice space. Providers argue that longer stays are a clinical necessity for some patients, whereas regulators often consider them to be indicators of fraud.
Generally, many patients enter hospice too late to reap the full benefits of interdisciplinary end-of-life care, according to Kramer.
Managing quality of life in the last hours, days and weeks of life can look very different in dementia and neurodegenerative patients, with hospices managing a multitude of symptoms related and unrelated to these conditions, she said. Integrating more concurrent care avenues alongside hospice may be needed to better meet these patients’ end-of-life care needs, Kramer said.
“How we manage the symptoms and quality of life is very different for this community,” Kramer said. “It requires a nuanced approach and specialized knowledge of neurologic diseases that the average hospice clinician may not have exposure to. So it takes a nuanced collaboration to provide care, comfort and not forgo hospice to do so. There is an opportunity on a bigger scale for patients to have better coverage of things like their expensive medications, for example, because it shouldn’t have to be choosing this versus that – care should be there through the end.”