Beyond Disease Modification: Palliative Care in Rheumatology Save

Rheumatology is a field characterized by long-term relationships between patients and their clinicians, built over years of trust, support and shared decision-making. Fortunately, therapeutic advances have transformed the prognosis of many rheumatic diseases, allowing patients to achieve sustained disease control and avoid irreversible organ damage. For some, however, rheumatology conditions progressively cause decline, damage, loss of function, and ultimately shortened life expectancy. Palliative care is an under-utilized and often misunderstood tool within rheumatology.

 

Palliative care is often mistakenly equated to hospice and end of life care. While this is an important subset of this field, it fails to incorporate the broader impacts and tenets of this field. Palliative care focuses on relieving suffering and improving the quality of life for patients with serious illness, while supporting their families and caregivers. It can be provided alongside disease-directed treatment and is not synonymous with hospice. This encompasses all quality of life issues including pain, mobility loss, muscle weakness, and caregiver stress. 

 

Importantly, incorporating palliative care does not mean abandoning disease-directed treatment, rather ensuring treatment remains aligned with what the patient values as illness evolves or progresses. As rheumatology is a field of chronic, non-curative, and sometimes progressive or disabling disease, palliative care is something that should be integral in our practice. 

 

In a video conversation on RheumNow post ACR Convergence 2023, Johns Hopkins Bayview palliative care physician Dr. David Wu described palliative care as a “continuum of care” where the “more advanced the illness gets, the more proportion should be focused on quality of life and palliative care.” We should introduce palliative concepts early in our patient interactions and increase with time, severity, and disease progression.

 

In a recent clinic visit, a longstanding patient with inclusion body myositis (IBM) told me that she was scheduled for a screening colonoscopy. Her disease is unfortunately quite progressed, requiring continuous BiPAP due to severe muscle weakness. Given her limited life expectancy and BiPAP dependence, the potential burdens and risks of the procedure appeared unlikely to align with her goals. This conversation allowed us to discuss broader concerns regarding difficulties in living with IBM, her limited support network, and her goals and values. Our conversation was bolstered by a strong long-standing relationship and building upon prior talks at previous points. After discussion of the risks, benefits and her priorities, she ultimately elected to defer colorectal cancer screening and subsequently elected to change her code status based on these goals.

 

At its core, palliative care asks “What matters most to the patient?” 

 

Rheumatologic disorders like inclusion body myositis, interstitial lung disease, systemic sclerosis, and vasculitis can progressively erode function, independence, and participate in activities that give life meaning. One conversation with a scleroderma patient informed me that playing the flute was her most important hobby, so we prioritized occupational therapy and aggressively treated her digital ulceration even while scaling back on other therapies. The best conversations occur before a crisis and can address anticipated progression and future decisions.

 

My practice area, like many across the country, has a shortage of outpatient palliative care specialists. 

 

The above IBM patient contacted several practitioners who worked exclusively with inpatient services, cancer centers, or hospice facilities. While I was able to find an eventual palliative care specialist, this dearth of resources necessitates that rheumatologists be comfortable and familiar with palliative care. This reality makes primary palliative care, incorporating basic palliative concepts into clinical practice without a specialist referral, an imperative skill for rheumatologists. We should bring this ethos into our examination rooms to address all aspects of our patient care.