A US web-based survey involving 200 respondents across 42 states was completed Sept–Oct 2023. The survey explored how patients with pulmonary arterial hypertension (PAH) understand and experience palliative care — which can be offered alongside standard treatment to ease symptoms and improve quality of life, but is underused and often misunderstood.
Most respondents equated palliative care with “end-of-life care” (25.7%) or associated it mainly with needing extra support (55.5%). The vast majority (85.5%) had never discussed palliative care with their healthcare provider, and most of those (63.7%) said it had simply never been offered to them — despite the fact that 88.5% said they’d feel comfortable discussing it if given the chance.
The authors conclude that patients’ limited exposure to palliative care, paired with widespread misconceptions about what it actually involves, points to a need for healthcare providers to proactively raise and explain the topic, rather than waiting for patients to ask.
Read more at this link on Pulmonary Circulation
Citation
El-Kersh K, Crawford R, DuBrock H, Classi P, Phan P, McLeod L, Wu B, Sese D. Patient Perspectives on Palliative Care in Pulmonary Arterial Hypertension in the United States. Pulm Circ. 2026 Jun 24;16(2):e70330. doi: 10.1002/pul2.70330. PMID: 42358520; PMCID: PMC13292157.