Hospice care focuses on the comfort and quality of life of patients who are nearing the end of their lives. It was designed with cancer patients in mind, but it’s also common for patients with dementia. A new study finds that hospice may be a better option for end-of-life dementia care than alternative methods, and dementia patients may experience the same satisfaction with care as cancer patients.
Researchers from the University of California San Francisco and Icahn School of Medicine at Mount Sinai used national data to examine how hospice managed the care and emotional wellbeing of dementia patients. The findings, published in the journal Health Affairs, show that more than half of patients’ medical proxies said the care was excellent, while two-thirds said their anxiety and sadness were managed.
To gauge the effects of hospice, the team turned to Medicare claims and the National Health and Aging Trends Study, which included 2,059 adults over 70 who died between 2011 and 2017. Of those, 40% had dementia and 59% of that group had used hospice. That meant nursing staff, social workers, and chaplains were regularly visiting the patient’s home, assisted living facility, nursing home, or designated area within a health care setting. The remaining 60% of participants did not have dementia, and among them, 43% used hospice.
To understand how hospice worked for each dementia patient in their final month of life, proxies including adult children and spouses were surveyed. Overall, 52% of proxies said the care was excellent and 67% said their sadness and anxiety were managed. For those who had not had hospice, those figures were 41% and 46%, respectively. Additionally, only 1 in 10 of the hospice group was moved elsewhere before their deaths, compared with 1 in 4 of those in other care.
Another find that stuck out to researchers was that dementia patients’ proxies rated the hospice experience about the same as those with other health conditions.
Dr. Krista L. Harrison, first author and associate professor in the UCSF Division of Geriatrics, says, “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.”
Despite these apparent benefits for dementia patients, the researchers say it can be difficult to get hospice care in this situation. Patients may risk being disenrolled, due to insurance reimbursement criteria that calls for documentation of continuous decline. The decline experienced during dementia may not be this cut and dried. This fear of being disenrolled may lead to dementia patients not getting the full benefit of hospice or enrolling too late.
Additionally, the team says that in hospice, it’s assumed that the patient will be able to contribute to discussions about their care and that family will handle care gaps when the care team is not on hand. However, hospice criteria for dementia requires that the patient is unable to speak and needs help with nearly all daily activities. That may mean their needs are beyond what can be provided by a Medicare team and loved ones will have to take on a lot more. The researchers feel that these policies may have to be modified.
Dr. Lauren Hunt, co-author and nurse practitioner and health services researcher at UCSF, says the hospice model “may result in both reduced access and paradoxically long stays, and high rates of disenrollment while still alive. Hospice policies could be changed to better fit the unpredictable trajectory of dementia.”
The team believes that due to the benefits hospice care can provide dementia patients, there should be further research to see if prognostic requirements for eligibility should be removed.