Little Consensus on Referral to Specialist Palliative Care for Dementia Patients

By Lisa Rapaport

March 23, 2021

(Reuters Health) - There is little consensus among medical professionals about when or why to refer patients with dementia to specialist palliative care, a recent systematic literature review suggests.

Researchers examined data from 59 previous studies examining what criteria clinicians use to determine the necessity of referral to a palliative care specialist for patients with dementia. They identified 13 categories of referral criteria, including 6 disease‐based and 7 needs‐based criteria.

Across all the studies, the most common rationale for specialist referral was dementia stage. Of 44 articles focused on that topic, 37 (84%) recommended referral when patients had advanced dementia.

Seven of 59 papers (12%) advised specialist referral for early-stage dementia, and just one paper (2%) recommended referral at time of diagnosis.

"Many clinicians still have the misconception that palliative care is only appropriate for patients at the end-of-life," said senior study author Dr. David Hui, an associate professor in the Department of Palliative Care, Rehabilitation and Integrative Medicine at the University of Texas MD Anderson Cancer Center, in Houston.

Ideally, specialist palliative care can be involved early in the disease trajectory when patients, their family, and palliative care team members can get to know each other over time, rather than waiting until patients could no longer communicate their wishes, Dr. Hui said by email.

"In my mind, good palliative care is preventative care - by providing good symptom management and proper education, we can prevent the symptom crisis necessitating emergency room visits," Dr. Hui added. "By facilitating advance care planning, we can prevent some patients from dying in the intensive care units when that may not be consistent with their wishes."

But the study results underscore a lack of consensus on best practices for referring patients with dementia to specialist palliative care, Dr. Hui said. Part of the reason is that many physicians looking after these patients in the front line feel that they already provide some basic level of palliative care and there is much variation in when they believe patients need specialist palliative care, he added.

A new dementia diagnosis is one moment when there is a small degree of consensus, with 29% of clinicians indicating this could be an opportunity for a specialist palliative care referral, the Dr. Hui's team writes in the Journal of the American Geriatrics Society.

Some other rationales for specialist palliative care referral included medical complications from dementia (20%), prognosis worsening (19%), and physical symptoms developing or worsening (19%).

One limitation of the analysis is that many of the included studies referenced palliative care without making a distinction between primary care providers and palliative care specialists, the authors note.

"All persons with dementia need to have goals of care conversations to understand their disease's progression, and care options as the disease progresses," said Susan Miller, a professor emerita at the Center for Gerontology and Health Care Research at the Brown University School of Public Health in Providence, Rhode Island.

"These conversations should be ongoing, and the content will likely change as the dementia progresses," Miller, who wasn't involved in the study, said by email.

SOURCE: Journal of the American Geriatrics Society, online March 3, 2021.