Is It Time to Refer My Dementia Patient to Palliative Care?

For the first time, an international expert panel has developed referral criteria for specialist palliative care for patients with dementia, which could help standardize referral across various care settings and lead to earlier referral.

With more than 55 million people living with dementia worldwide — more than 6 million in the United States alone — the guidance is sorely needed.

The lack of uniform criteria has meant that many patients with dementia who might have benefited from an interdisciplinary palliative care team received the services too late — if at all, Panelist Yuchieh Kathryn Chang, DO, told Medscape Medical News.

“Unfortunately, current practice often sees specialist palliative care referrals occurring late in the dementia illness trajectory,” said Chang, with the Department of Palliative Care, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston.

So Chang and more than 60 other dementia experts spent nearly 2 years developing a list of 15 major and 42 minor criteria for specialist palliative care referral. Their work was published on May 14 in JAMA Network Open.

How Were the Criteria Developed — and Why Now? 

Dementia is a growing public health issue, with prevalence expected to triple by 2050 due to population aging.

“Patients with dementia have many supportive care needs, such as distressing symptoms, information gaps, complex decisions, and fragmented care coordination,” Chang said. “Their families also often experience significant caregiver burden. Many of these may be better addressed with specialist palliative care teams.” 

The World Health Organization identifies specialist palliative care as a component of comprehensive dementia care, yet referrals are often late or inconsistent.

A systematic review by Chang and colleagues found considerable heterogeneity in the referral criteria for patients with dementia to specialist palliative care, suggesting a lack of uniformity in clinical practice.

To address this gap, a multidisciplinary panel of 63 expert clinicians from five continents were invited to take part in three rounds of Delphi surveys to rate 83 putative referral criteria, which were generated from a prior systematic review and steering committee discussion.

Panelists were required to have expertise in geriatrics, neurology, psychiatry, and/or palliative care, with at least 5 years post-qualification clinical experience with patients with dementia and an affiliation with a center offering specialist dementia care.

Reviews of the first Delphi round survey took place in September 2022, with the final round concluding in February 2023.

What Did the Panel Agree On? 

More than 90% of panelists participated in all three survey rounds. From the 83 initial proposed criteria for specialist palliative care referral, panelists achieved consensus on 15 “major” referral criteria, with a level of agreement at 70% or higher.

The 15 major criteria fall under five categories broadly classified as needs-based criteria (symptom distress and psychosocial factors or decision-making) and disease-based criteria (dementia type, comorbidities or complications, and hospital use).

The panelists determined that six of the eight needs-based referral criteria and four of the seven disease-based referral criteria are appropriate starting at the moderate stage of dementia — a nod to earlier referral — while the rest are applicable only for patients at the severe stage.

The six needs-based criteria appropriate for referral at the moderate stage are severe physical symptoms; severe spiritual or existential distress; request for hastened death, assisted suicide, euthanasia; hospice referral or discussion; patient or family request; and patient and/or family decline to seek care at an acute care facility.

“For example, patients with refractory physical symptoms, even though they are not in a severe stage of dementia, should be referred to specialist palliative care to address their specific needs while continuing overall care with the referring physician,” the authors advised.

The four disease-based criteria for referral at the moderate stage are rapidly progressive dementia; withdrawal or de-escalation of life-prolonging interventions; two or more episodes of aspiration pneumonia in the past year; and one or more intensive care unit admissions within the past 3 months.

Although 70% of panelists agreed that fulfilling even one criterion meant palliative care referral was appropriate, they also said that failure to meet any of the 15 major criteria does not necessarily mean that they are not candidates for specialist palliative care.

They also identified 42 “minor” referral criteria that may, in combination, be considered as potential triggers for specialist palliative care referral.

The panel cautioned, however, that future research needs to examine how to best incorporate the minor criteria and whether their use might result in earlier referral.

Where Was There No Consensus?

The panel did not reach consensus regarding referral criteria for early-stage dementia, “an outcome we interpret as an emphasis on a balanced approach between primary and specialist palliative care roles,” Chang told Medscape Medical News.

The panel also could not reach consensus on functional impairment or time-based factors or family/caregiver distress/burden as major referral criteria.

They acknowledged that this was “somewhat surprising” given that functional impairment and time-based factors are commonly considered in the literature and family/caregiver distress/burden is an area that specialist palliative care is known to focus on.

Laura Morrison, MD, with the Yale Palliative Care Program at Yale University, New Haven, Connecticut, was also surprised by the lack of consensus in prioritizing family and caregiver focused dementia referral criteria.

“I hope this can be an area of focused investigation going forward given that that number of caregivers is increasing quickly with many of the needs well documented,” Morrison told Medscape Medical News.

“With the enormous toll on the family/caregiver in dementia, exploring the lack of prioritization is warranted,” Morrison wrote in an invited commentary on the referral criteria.

“Another priority area in my mind is how to apply the international perspective and expertise represented by these consensus criteria to the breadth of international settings, accounting for the rich diversity of cultural practices and available health care and financial resources,” Morrison said.

How Might the Criteria Change Practice?

Given limited specialist palliative care resources, a set of simple, robust, and valid criteria may help identify a subgroup of patients with dementia most likely benefit from specialist palliative care referral (as opposed to primary palliative care alone), thereby improving timely access and resource use, the panel said.

“We envision these consensus referral criteria as a first step to help clinicians, such as geriatric, neurology, and primary care teams, to identify patients who may be appropriate for specialist palliative care referral,” Chang told Medscape Medical News.

The fact that panelists felt that most of the major referral criteria can be applied starting at the moderate stage supports earlier referral. In fact, 75% of the experts noted that patients in their own clinical settings were referred to specialist palliative care too late in the course of their dementia.

“We advocate for earlier referral than is typical, drawing on the benefits observed in oncology (improved symptom control, mood, patient and caregiver satisfaction, quality end-of-life care, and survival), while acknowledging that further research is necessary to determine if these benefits translate to the dementia care setting,” Chang said.

The next step is to test the referral criteria in clinical settings or in clinical trials to study whether they can be used to improve the referral process and boost patient and caregiver outcomes.

“These criteria are intended as an initial step in this direction. It is crucial to emphasize that they are meant to support, not replace, clinical judgment,” Chang said.

Morrison told Medscape Medical News the proposed criteria are “an important contribution in providing a broad perspective on all the considerations for possible referral and the areas where consensus is still lacking. Clinicians and investigators can now begin to test models of delivery with different proposed criteria and measure patient- and family-centered outcomes.”

This research had no commercial funding. Chang and Morrison declared no relevant conflicts of interest.