Background/Purpose: Despite major advances in the treatment of systemic rheumatic diseases, a population remains—including those with systemic vasculitis, inflammatory myositis and systemic sclerosis—who suffer from life-limiting disease. Typically, these patients have little access to palliative care services, and there is a paucity of data on this potential care gap. This study aims to define the referral practices of Canadian Rheumatologists to palliative care services and to explore rheumatologists’ attitudes toward palliative care and medical assistance in dying (MAiD).

Methods: All rheumatologists who are members of the Canadian Rheumatology Association were invited to complete an online questionnaire using Survey Gizmo. Responses were received anonymously by the online survey program, aggregated and analyzed using descriptive statistics.

Results: 37 (19%) of rheumatologists completed the survey. 22 (60%) self-identified as academic physicians. The majority were general rheumatologists (n=30, 83%), caring primarily for adult patients (n=33, 89%). 68% reported exposure to elements of palliative care during medical training, covering pain management (n=23, 77%), management of other physical symptoms (n=21, 70%), end-of-life planning (n=19, 63%) or communication skills (n=21, 70%).

Rheumatologists categorized up to 50% of their inpatients and up to 10% of their outpatients as having advanced rheumatologic disease with significant functional limitation or low estimated 1-year survival. 44% (n=16) reported access to palliative care unit or hospice services for their patients, and 36% (n=13) were aware of local palliative home care services. 54% (n=19) had never referred a patient to palliative care services. For those who had, they did so most often for uncontrolled symptoms and prognosis less than 1 year (n=22, 66%), or for terminally ill inpatients who required assistance with discharge planning (n=24, 60%). 14% (n=5) reported feeling “very comfortable” identifying patients with life-limiting rheumatic conditions that might benefit from a palliative care approach to care, and 22% (n=5) were “very comfortable” discussing such an approach with their patients. 42% indicated they were “not very comfortable” (n=10, 28%), or “not at all comfortable” (n=5, 14%) engaging in advance care planning conversations with their patients.

While 33% (n=12) of rheumatologists had been approached by a patient requesting MAiD, a large number rated their knowledge of eligibility criteria (n=17, 47%) and of the assessment and approval process (n=19, 53%) as “poor”.

Conclusion: This study is the first to describe self-reported referral practices of rheumatologists to palliative care services, and to identify attitudes of these physicians towards palliative care consultation. The results expose gaps in knowledge of, and comfort with, palliative care services for patients with life-limiting rheumatic diseases, as well as barriers to accessing these services for patients with non-cancer illnesses. Further work is needed to engage rheumatologists about the role that palliative care teams can play in providing higher quality care to patients with advanced systemic rheumatic illnesses toward the end of life.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/rheumatologists-attitudes-toward-palliative-care-and-medical-assistance-in-dying/