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Should Hospice Rules Change For People With Dementia?

Should Hospice Rules Change for People with Dementia?

Helping the families of people with dementia is a major part of hospice care, but are hospice agencies being scrutinized and penalized for this care? In March, the Journal of Palliative Medicine published a new study exploring how dementia influences outcomes on which hospice agencies are scrutinized.1 This may put a chilling effect on the availability of hospice for dementia patients. Should Medicare’s hospice eligibility rules be upgraded to be condition specific?

Roughly Half of Hospice Patients have Dementia

It’s commonly stated that 16% of hospice enrollees have dementia. New evidence reveals this is a large understatement, though. While it is true that 16% of hospice claims show dementia as the primary diagnosis, many more hospice enrollees have comorbid dementia. That means they have dementia, but it’s not the primary listed reason for hospice. In the current study, Melissa Aldridge, PhD (Icahn School of Medicine at Mount Sinai), and her research colleagues find that about 15% of hospice enrollees have a primary diagnosis of dementia, but twice that many have comorbid dementia. Resultantly, 45% – close to half – of all hospice patients have dementia.

What is the Problem with Having Dementia in Hospice?

A dementia diagnosis creates problems for hospice agencies. The prognosis (or estimated length of life) proves unpredictable. This results in a higher likelihood of hospice patients receiving more than six months of service or discharging alive after months of service. Unfortunately, the Office of the Inspector General has identified these long lengths of stay and live discharges as vulnerabilities in the Medicare program. More to the point, Optima Healthcare Solutions warns that these situations serve as red flags that will send inspectors knocking on the hospice agency’s doors. When inspectors find patients who outlived their prognosis, Medicare can take back reimbursement for services already rendered, if the inspector feels the original prognosis was incorrect. This also opens the door for inspectors opening all similar cases and levying large takebacks.

How Much Does Dementia Affect Hospice Length of Stay?

Medicare regulations dictate that a person in hospice should have a prognosis (survival estimate) of six months or less. This is no problem in most cases. The median length of stay in hospice is only 16 days. Meanwhile, 15% of patients receive hospice for longer than six months.   

On the other hand, when patients have comorbid dementia, they prove 52% more likely to stay in hospice more than six months. What’s more, those patients with dementia as their primary diagnosis prove 155% more likely to stay in hospice longer than six months. Nearly four out of ten patients in hospice for dementia need hospice for longer than six months. Hospice patients with dementia can be more than twice as likely to be the types of cases that can get hospice agencies into trouble. Anecdotally, hospice agencies have reported a tendency to not promote services for patients with dementia. They prefer patients who fit Medicare regulations more easily.

What’s the Solution?

Is it time to rethink the six-month prognosis rule? This rule dates back 40 years, to a time when hospice was largely something for people with cancer. Cancer follows a more predictable course than other terminal diseases, especially dementia. Today, cancer makes up less than a third of hospice cases, and dementia ranks as the second most frequent hospice diagnosis. Shouldn’t eligibility for palliative care be based on whether a patient needs palliative care rather than whether the person has a predictable terminal disease? Hospice saves money for Medicare, and longer hospice saves more. Perhaps it’s time to rewrite the eligibility rules to recognize that some families need hospice, even when the prognosis is less predictable.


  1. Aldridge MD, Hunt L, Husain M, Li L, Kelley A. Impact of comorbid dementia on patterns of hospice use. Journal of Palliative Medicine. 2022 Mar 1;25(3):396-404.