Persons with Dementia Face Higher Rates of Hospice Disenrollment, Study Suggests



A recent study finds that persons diagnosed with dementia are more likely to be disenrolled from hospice care centers than persons without dementia.

Dr. Lauren Hunt of the University of California, San Francisco and Dr. Christine Richie of Massachusetts General Hospital conducted a national cohort study that determined that patients with dementia are up to four times more likely to be disenrolled from hospice compared to patients without dementia.

“As a hospice nurse, I saw many of my patients with dementia experience disenrollment, primarily because hospice is set up for people with a predictable trajectory at end of life, but people with dementia have a very uncertain trajectory and prognosis,” Hunt said in a May 24 article published in Healio.

She continued: “People refer to hospice disenrollment as ‘graduating,’ but to me, it seemed more like getting expelled. It deprived my patients of the comprehensive services that hospice provides when there really are no other similar services available.”

Additionally, Hunt pointed to potential reasons as to why many Black and Hispanic persons with dementia are more likely to be disenrolled from hospice.

“This points to growing concerns that hospice care is not adapted to the needs of Black, Hispanic and other patients from racial/ethnic minority groups. For example, hospice providers may not communicate or educate in ways that are adapted to the language, culture or education level of people from racial/ethnic minority groups,” Hunt said in the article. “If English is a second language, a caregiver might not understand materials in English that instruct them to call hospice instead of 911 in case of emergency, resulting in hospice disenrollment when the patient is admitted to the hospital.”

The Fall 2016 issue of AFTD’s Partners in FTD Care contains more information on hospice and comfort care options for persons diagnosed with FTD.

Read the full Healio article here.