Rheumatology and palliative care: needs and opportunities

Correspondence to Dr Kwok Ying Chan, Palliative Medical Unit, Grantham Hospital, 125 Wong Chuk Hang Road, Aberdeen, Hong Kong; [email protected]

Introduction

In recent years, the field of palliative care (PC) has expanded to medical conditions beyond its conventional scope of terminal malignancy and end-stage organ failure.¹ While rheumatological conditions are often viewed as chronic non-life-threatening diseases, a number of systemic inflammatory disorders can be refractory to treatments and cause significant patient sufferings and excess mortality. This refers to patients with advanced or recalcitrant systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), systemic sclerosis (SS), dermatomyositis and vasculitides. Notwithstanding, a subset of patients with systemic vasculitis, SS, inflammatory myositis and refractory SLE and RA still suffer from life-limiting diseases with great symptom burdens and, often, poor prognosis.¹

Unmet needs with new population due to novel therapies

According to WHO, PC service should be considered in patients suffering from severe or recalcitrant systemic rheumatic disease.¹ This is especially relevant in patients with multisystemic involvement and substantial damage accrual. Indeed, extra-articular involvement (eg, skin, eye, lung, heart, kidney) of these rheumatic diseases is a signature of severe disease and is often associated with considerable patient morbidity and mortality.² Increased comorbidities are another aspect of systemic rheumatic diseases that may reduce life expectancy. Patients with RA typically die from heart failure, primarily as a result of persistent cardiac insufficiency.²

The advances in the treatment of systemic rheumatic diseases over the past few decades have led to improved short-term and long-term clinical outcomes in many of adult patients.³ However, some of them still suffer from life-limiting diseases with heavy symptom burdens and, often, poor prognoses.¹ These patients who hardly ever have access to PC,¹ are often left to live with marked and often debilitating sequelae stemmed from the disease process or associated therapies. In this context, paediatric patients with systemic rheumatic diseases are also often difficult to manage and potentially fatal.^{4 5} While the advent of biologics have improved the short-term responses of patients with childhood-onset severe rheumatic diseases, many of them still experience substantial pain and psychological impacts, based on the Arthritis Foundation report on juvenile arthritis.⁶ The presence of intractable pain also interferes with children’s sleep, attention span...