Abstract
Pulmonary arterial hypertension (PAH) is a progressive, incurable disease that results
in significant symptom burden, health care utilization, and eventually premature death.
Despite the advancements made in treatment and management strategies, survival has
remained poor. End-of-life care is a challenging issue in management of PAH, especially
when patients are in younger age group. End-of-life care revolves around symptom palliation
and reducing psychosocial disease burden for a dying patient and entails advanced
care planning that are often challenging. Thus, support from palliative care specialist
becomes extremely important in these patients. Early introduction to palliative care
in patients with high symptom burden and psychosocial suffering is suggested. Despite
of the benefits of an early intervention, palliative care remains underutilized in
patients with PAH, and this significantly raises issues around end-of-life care in
PAH. In this review, we will discuss the opportunities offered and the existing barriers
in addressing high symptom burden and end-of-life care issues. We will focus on the
current evidence, identify areas for future research, and provide a call-to-action
for better guidance to PAH specialists in making timely, appropriate interventions
that can help mitigate end-of-life care issues.
Keywords
pulmonary arterial hypertension - palliative care - end-of-life - utilization - barriers
