Paging Palliative Care: Barriers to Referral and Why Rheumatologists Aren't Making the Call (Yet).

Abstract

Paging palliative care: Barriers to Referral and Why Rheumatologists Aren't Making the Call (Yet).

Context: People with serious rheumatic disease experience high morbidity and mortality, yet palliative care (PC) remains an underutilized resource for these patients. There is a lack of knowledge about the obstacles and opportunities for integrating PC into rheumatology practices.

Objectives: We aim to identify provider-specific barriers to PC referral for people with serious rheumatic diseases.

Methods: Rheumatology and PC providers in the United States were surveyed on barriers to PC referral for people with rheumatic diseases. Surveys were distributed via email and in-person at local and national conferences. Results were analyzed using descriptive statistics, Fisher's exact test for categorical outcomes, and two-sample t-tests for continuous outcomes.

Results: 201 rheumatologists and 217 palliative care providers completed the survey. Top barriers identified by rheumatologists included uncertainty about when to refer to PC (n = 100, 50%), concern that patients will think of palliative care as "giving up" (n = 98, 49%), and an insufficient number of people with advanced rheumatic disease who need PC (n = 80, 40%). Top barriers identified by PC providers included uncertainties about rheumatic disease prognosis (n = 143, 66%), rheumatic disease treatments and side effects (n = 132, 61%), and rheumatic disease course/complications (n = 115, 53%).

Conclusion: Rheumatologists face uncertainty about who, when, and how to refer to PC, while PC providers identify inadequate knowledge about rheumatic diseases as key barriers. Ongoing efforts are needed to identify patients who would most benefit from PC and reduce hurdles to PC referral by rheumatologists.