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:
- 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
- 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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