Bridging the Gap: Rheumatology Meets Palliative Care

Systemic autoimmune rheumatic diseases (SARDs) are frequently chronic, multisystem, and profoundly debilitating, with patients experiencing symptoms that may parallel the severity experienced by patients with advanced malignancy. Although there have been tremendous advances in the care of patients with SARDs in the last several decades, there remain patients for whom these therapies do not provide meaningful benefit in terms of quantity or quality of life.^1,2

Despite this reality, timely integration of palliative care (PC) for patients with SARDs remains uncommon; when referrals do occur, they are often late, arriving in the final days or weeks of life.^1,2 This pattern reflects persistent misconceptions regarding both the appropriate timing of PC involvement and the breadth of services PC can provide. Early efforts to ameliorate symptoms alongside ongoing disease-directed therapies, together with incorporation of advance care planning, clarification of patient goals and expectations, and attention to socioeconomic and quality-of-life considerations, are well established to improve outcomes.^3-6 Despite this, PC remains underused.

In this issue of The Journal of Rheumatology, Herndon and colleagues contribute meaningfully to understanding these gaps by examining perspectives of rheumatology and PC providers in caring for patients with advanced SARDs, which they define as SARDs with advanced organ involvement and either a substantial negative effect on quality of life or a high risk of mortality within the next year.⁷

Their findings highlight important educational deficiencies across both disciplines. Nearly two-thirds of rheumatologists reported limited formal training in PC, whereas more than half of PC providers had less than 1 week of rheumatology education.⁷ Predictably, comfort with the principles and practices of these complementary specialties was suboptimal. Notably, prior PC education among rheumatologists did not significantly increase referral rates to PC, although it did appear to enhance self-reported comfort with PC-related skills. Junior clinicians in both groups demonstrated relatively greater comfort with cross-disciplinary principles, perhaps reflecting a gradual cultural shift toward interdisciplinary collaboration.

Importantly, both rheumatologists and PC providers acknowledged the potential value of PC for patients with advanced SARDs, yet referral rates remained low. This discordance mirrors prior literature,^1-3 including our own national survey conducted through the Canadian Rheumatology Association, which identified substantial gaps in knowledge, comfort, and access to PC services for patients with SARDs, as well as structural barriers to care for patients with nonmalignant illness.⁸

Although the diverse sampling of practice settings and experience levels in the study by Herndon et al⁷ strengthens the relevance of its findings, future work would benefit from larger sample sizes, broader geographic representation, and the use of validated survey instruments to enhance generalizability and reduce bias.

Encouragingly, integrated care models offer a potential path forward. For example, multidisciplinary clinics developed for systemic sclerosis have demonstrated feasibility and benefit, including models that incorporate dual-trained specialists alongside rheumatologists, with clearly defined referral triggers to guide appropriate patient selection.⁹

Beyond systemic sclerosis, the role of PC should be emphasized in other advanced SARDs, including in systemic lupus erythematosus, idiopathic inflammatory myopathies, and vasculitides, as well as in patients experiencing immune-related adverse events from cancer immunotherapy. Data from a large cohort of hospitalized patients with inclusion body myositis demonstrate that only 7.1% received PC consultation, yet those who did had shorter hospital stays and lower healthcare costs,³ underscoring both clinical and system-level benefits.

From our perspective as clinicians practicing both rheumatology and PC, additional opportunities for collaboration merit exploration. Procedural interventions commonly performed by rheumatologists, such as joint, bursal, or tendon sheath injections, may represent low-risk, high-yield strategies for symptom control in select PC populations, with the potential to reduce reliance on systemic analgesics along with their associated adverse effects. Whether or not such collaborations occur, and how they are operationalized currently, warrants further study.

The findings presented by Herndon et al⁷ serve as an important foundation for continued inquiry. Uncertainty regarding the optimal timing of PC referral remains a key barrier and likely contributes to the observed discrepancy between perceived utility and actual referral patterns. Practical tools, such as the “surprise question” (ie, “Would I be surprised if this patient died within the next 12 months?”), have been proposed to prompt earlier consideration of PC involvement and advance care planning.¹⁰ Evaluating the uptake and effect of such tools among rheumatology providers represents a logical next step.

Finally, targeted educational interventions that bring together rheumatology and PC providers—through shared workshops, case-based learning, and simulation—may foster mutual understanding and improve both confidence and competence. Longitudinal evaluation of such initiatives could help determine their effect on referral patterns and patient-centered outcomes.

Greater integration between rheumatology and PC is not simply an aspiration, but a necessity, to meet the complex needs of this patient population. Bridging existing gaps in interdisciplinary education, collaboration, and systems of care represents an important opportunity to improve both quality of life in patients with advanced SARDs and health system efficiency.

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