Study finds hospice improves quality of life for dementia patients

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Patients with dementia are more likely to receive better care and experience less anxiety in hospice, according to a study published Monday. Photo by Gundula Vogel/Pixabay.

Hospice patients with dementia are more likely to experience better care and less anxiety than dementia patients not on hospice, according to a study released Monday by UC San Francisco and Icahn School of Medicine at Mount Sinai.

Hospice patients with dementia tend to experience less sadness with regular visits from nursing staff, social workers and chaplains to the patient’s home or assisted living facility, according to the study published in Health Affairs.

The hospice program was originally designed for patients with cancer who are expected to die within six months, but researchers found close to half of older adult hospice enrollees also have a diagnosis of dementia.

The study tracked Medicare claims of 2,059 seniors over 70 who had died between 2011 and 2017 and found 40% of those seniors had dementia, but only 59% of those with dementia used hospice.

Researchers compared the quality of care in the last month of life between patients with dementia on hospice and not on hospice by questioning family members. They found 52% of the spouses and adult children ranked the care as excellent compared with 41% of non-hospice enrollees.

In addition, 67% of hospice enrollees’ families said the loved one’s sadness and anxiety was managed, compared to 46% of those not enrolled in hospice.

Researchers were surprised by the finding.

“We honestly expected it not to be positive. Since the hospice model was designed for patients with cancer, we expected end-of-life care to be worse for people with dementia,” study first author Dr. Krista Harrison, an associate professor in the UCSF Division of Geriatrics, said in a press release.

Hospice patients with dementia often risk having their care terminated due to insurance reimbursement criteria that requires documentation of continuous decline, Harrison said. “Disenrollment can feel like abandonment because there are few adequate alternative models of near-death care for people with dementia.”

Researchers said hospice enrollees are entitled to an unlimited number of days of care, but increased oversight means many hospice organizations are reluctant to enroll patients with dementia for more than “brink-of-death care.”

The hospice model “may result in both reduced access and paradoxically long stays, and high rates of disenrollment while still alive,” said study co-author Dr. Lauren Hunt, a nurse practitioner and health services researcher at UCSF.

“Hospice policies should be changed to better fit the unpredictable trajectory of dementia.”

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