Referral criteria to specialist palliative care for patients with dementia: A systematic review

Abstract

Background Patients with dementia often have significant symptom burden and a progressive course of functional deterioration. Specialist palliative care referral may be helpful, but it is unclear who and when patients should be referred. We conducted a systematic review of the literature to examine referral criteria for palliative care among patients with dementia. Methods We searched Ovid MEDLINE, Ovid Embase, Ovid PsycInfo, Cochrane Library, PubMed, and CINAHL databases for articles from inception to December 3, 2019, related to specialist palliative care referral for dementia. Two investigators independently reviewed the citations for inclusion, extracted the referral criteria, and categorized them thematically. Results Of the 1788 citations, 59 articles were included in the final sample. We identified 13 categories of referral criteria, including 6 disease‐based and 7 needs‐based criteria. The most commonly discussed criterion was “dementia stage” (n = 43, 73%), followed by “new diagnosis of dementia” (n = 17, 29%), “medical complications of dementia” (n = 12, 20%), “prognosis” (n = 11, 19%), and “physical symptoms” (n = 11, 19%). Under dementia stage, 37/44 (84%) articles recommended a palliative care referral for advanced dementia. Pneumonia (n = 6, 10%), fall/fracture (n = 4, 7%), and decubitus ulcers (n = 4, 7%) were most commonly discussed complications to trigger a referral. Under prognosis, the time frame for referral varied from <2 years of life expectancy to <6 months. 3 (5%) of articles recommended “surprise question” as a potential trigger. Conclusions This systematic review highlighted the lack of consensus regarding referral criteria for palliative care in patients with dementia and the need to identify timely triggers to standardize referral.

Medical referral criteria for palliative care in adults: a scoping review

“…Timely referral in advanced respiratory failure means typically having dyspnea at rest with chronic oxygen therapy [27][28][29]. In advanced dementia and other neurodegenerative disorders qualified for PC, the course of the illness is usually complicated by nutritional impairment, recurrent infections and coincidence of "nonhealable" decubitus ulcers [30][31][32][33][34][35][36][37]. In diabetes, only a small percentage of deaths is uniquely attributable to this single disorder.…”

Comment on: Referral criteria to specialist palliative care for patients with dementia: A systematic review

“…There are three points we would like to highlight in response to the letter by Tan and Ho. 1 First, many clinicians still see specialist palliative care referral to be only appropriate for dementia patients at the end-of-life. However, specialist palliative care, at its best, is a form of preventative care.…”

“…5 We are unsure however, if standardized criteria for specialist palliative care referral in patients with dementia is necessarily the way forward. The symptom burden and "medical complications of dementia 1 " are indeed distinct from conditions traditionally referred early for specialist palliative care such as those in Oncology. Identifying patients with advanced stages of dementia who may require end of life care is important and various validated scales to do so exist as listed in Mo et al's article.…”

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study

“…Further, people with advanced dementia often experience a variety of functional impairments and comorbidities, such as delirium, eating difficulties, and pneumonia. Overall functioning declines at the end of life, which leads to high caregiver burden [ 10 – 13 ]. Given these factors, a “good death” or, more extended, a “good end of life,” may be characterized by unique components on top of possible cross-cultural differences.…”