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Summer 2019 (Volume 29, Number 2)

Palliative Care for the Rheumatologist:
When Does the End Begin…And Why Does It Matter?

Alexandra Saltman, B.A. (Hons), MD, FRCPC

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How often, if ever, would you refer a patient with a life-limiting rheumatologic condition to specialized palliative care services?

Would you do so if your patient had uncontrolled symptoms; if he or she had spiritual, psychological or social distress stemming from their illness; or if he or she had a short prognosis, and required assistance with advance care planning?

How comfortable would you be in identifying patients in your practice who might benefit from a palliative approach to care? And how would you introduce this approach to your patient?

When we think of palliative care, we often think about care for a dying patient in the last days, weeks or months of life. But palliative care in 2019 has come to encompass much more than that limited definition. The so-called “third wave” of palliative care seeks to integrate a palliative approach to care alongside disease-specific treatment, as part of a continuum of care. This approach aims to improve quality of life for patients with life-limiting illnesses, through the prevention and relief of suffering, the control of symptoms, and the management of physical, psychosocial and spiritual distress.

Such an approach is supported by a growing body of evidence that demonstrates improved patient satisfaction with care, decreased symptom burden and, in some cases, better survival, when a palliative approach to care is integrated early in a patient’s disease trajectory.1,2,3,4,5,6,7

The last several decades have brought major advances in the treatment of systemic rheumatic diseases that have led to reduced morbidity and mortality for many of our patients. However, a patient population remains – those with systemic vasculitis, systemic sclerosis, inflammatory myositis, and severe courses of systemic lupus erythematosus and rheumatoid arthritis – who still suffer from life-limiting diseases with high symptom burdens and, often, poor prognoses. Nonetheless, these patients hardly ever have access to palliative care, and there is little data on their palliative care needs.8,9,10,11,12

At the same time, recent advances in oncology have created a second population of patients at the intersection of these two fields. By “awakening the immune system,” new targeted therapies to treat metastatic cancer – namely, immune checkpoint inhibitors – have led to the development of de novo autoimmune diseases, so called rheumatic immune-related adverse events, in about one third of patients. This phenomenon has created another population of patients with both rheumatologic and palliative care needs.

From my earliest clinical experiences, I gravitated toward caring for patients suffering from complex, chronic disease. I was drawn to the natural areas of overlap between rheumatology and palliative care—in their shared emphasis on pain and symptom management, quality-of-life interventions, longitudinal relationships with patients and families, and complex, chronic disease management. But, I encountered few, if any, opportunities for these patients to access palliative services during my training, notwithstanding that the nature of their illnesses and treatments often made symptom management, and end-of-life care planning, uniquely challenging for their treating physicians. And so, it was for these reasons that I set out to position myself to practice dually as a rheumatologist and a palliative care physician.

By completing advanced clinical training in both specialities, through the Royal College certified Rheumatology Subspecialty Program at the University of Toronto, followed by a University Health Network Clinical Fellowship in Palliative Medicine, I have set out to create a niche at the intersection of these two specialties.

To pilot this model of chronic, integrated, subspecialty palliative care in rheumatology, I have launched two new clinics at Mount Sinai Hospital in Toronto:

  1. Advanced Pain and Symptom Management in Rheumatology Clinic, focusing on complex symptom management, palliative planning and endof- life care for patients diagnosed with complex, chronic and life-limiting systemic rheumatic diseases; and
  2. Rheumatology and Immuno-Oncology Clinic, focusing on the management of patients with immune-related adverse events secondary to immune checkpoint inhibitor therapy for advanced malignancies, other immunotherapy-related autoimmune complications, and cancer-associated arthropathies.

I would welcome referrals to either clinic for an in-person consultation (or via telemedicine, if geographically distant and clinically appropriate), either faxed to 416-586- 8766, to my attention, or emailed to alexandra.saltman@sinaihealthsystem.ca.

References:

1. Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol 2015; 33(13):1438-1445.

2. Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial.

Lancet Respir Med 2014; 2(12):979-987. 3. Hospice and Palliative Care – Facts and Figures 2005. Available at www.hospiceinformation.info/ factsandfigures.asp.

4. Lynn J. Caring at the end of our lives. NEJM 1996;335: 201-202.

5. Miller SC, Lima JC, Intrator O, et al. Palliative care consultations in nursing homes and reductions in acute care use and potentially burdensome end-of-life transitions. J Am Geriatr Soc 2016; 64(11):2280-2287.

6. Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with U.S. hospital palliative care consultation programs. Arch Intern Med 2008; 168(16):1783-1790.

7. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-smallcell lung cancer. N Engl J Med 2010; 363:733-742.

8. Bourgarit A, Le Toumelin P, Pagnoux C, Cohen P, Mahr A, Le Guern V, et al. Deaths occurring the first year after treatment onset for polyarteritis nodosa, microscopic polyangiitis and Churg-Strauss syndrome. Medicine 2005; 84:323-330.

9. Cho J, Lo D, Mak A, Zhou J, Tay SH. High Symptom Prevalence and Under-Utilisation of Palliative Care at End-of-Life of Patients with Systemic Rheumatic Diseases [abstract]. Arthritis Rheumatol 2016; 68 (suppl 10). Available at https://acrabstracts.org/abstract/high-symptom-prevalence- and-underutilisation- of-palliative-care-at-end-of-life-of-patients-with-systemic-rheumaticdiseases/. Accessed November 14, 2018.

10. Crosby V & Wilcock A. End of life care in rheumatology: Room for improvement. Rheumatology 2011; 50:1187-1188.

11. Pagnoux C, Guillevin L. How can patient care be improved beyond medical treatment? Best Pract Res Clin Rheumatol 2005; 19:337-44.

12. Simon S, Schwartz-Eywill M, Bausewein C. Palliative Care In Rheumatic Diseases: A First Approach. Journal of Palliative Care 2008; 24(4):270-273.

Alexandra Saltman, B.A. (Hons), MD, FRCPC
Rheumatologist,
Mount Sinai Hospital
Palliative Care Physician,
Princess Margaret Hospital
University Health Network
Toronto, Ontario

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