Researchers discovered that patients with pulmonary arterial hypertension (PAH) were infrequently referred to palliative care services, with the bulk of referrals occurring in sicker patients with poor quality-of-life scores close to the end of life. Their study was published in Respiratory Medicine.

Despite advancements in PAH therapeutics, prognosis remains poor, with a median survival of only 7 years from diagnosis. The only curative option in PAH for vascular remodeling and right heart failure remains lung transplantation. Common symptoms include breathlessness, fatigue, and syncope, often resulting in poor psychological health and low quality-of-life scores.

The purpose of palliative care is the alleviation of physical and emotional suffering in patients with severe illness to improve their quality of life. Studies demonstrate that palliative care reduces rehospitalization and improves quality of life in patients with left-sided heart failure.

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“However, to date, palliative care has been both an underutilized and understudied service for patients with PAH,” the authors of the study wrote. 

Read more about PAH etiology 

The researchers hence set out to characterize the state of palliative care among patients with PAH. They utilized data from the Pulmonary Hypertension Association Registry, a nationwide registry of patients with PAH who were treated at designated centers of clinical excellence. Patients who were over the age of 18 years and had at least 1 follow-up visit between January 2015 and June 2021 were included in the study (n=1578). 

“Despite receiving care from providers at centers of clinical excellence and suffering from a life-limiting, burdensome disease, only 5.8% of patients were referred to palliative care,” the authors of the study wrote. This figure is in contrast to palliative care referrals in cancer centers, in which an estimated 45% of patients with advanced cancer receive referrals.

In addition, the research team reported that around 70% of patients who died during the study period never received a referral to a palliative care center. This study suggests there may be deficiencies in how physicians determine which patients with PAH qualify for palliative care.


Rohlfing AB, Bischoff KE, Kolaitis NA, et al; PHAR investigators. Palliative care referrals in patients with pulmonary arterial hypertension: the Pulmonary Hypertension Association RegistryRespir Med. Published online November 30, 2022. doi:10.1016/j.rmed.2022.107066