Although treatment options for WHO Group 1 PH (pulmonary arterial hypertension, or PAH) have increased over the past few decades, symptom severity and quality of life still impose significant burden on patients. Palliative care – often confused with hospice care – is goal-oriented care for patients with chronic illnesses that help to balance life-saving treatment with quality of life. In order to determine the role of palliative care in managing PAH, Michael P. Gray, M.P.H., PHA’s senior director of medical services, and researchers through the Pulmonary Hypertension Association Registry (PHAR) examined how many patients received referrals to palliative care from their PH specialists, and how long after their diagnoses they were referred. Initial data were presented at the American Thoracic Society 2018 Annual Congress and PHA’s 2018 International PH Conference and Scientific Sessions.

Of the 276 patients examined, only 13 (5 percent) received a referral to palliative care after an average of 9.4 months of follow-up. Patients who were referred tended to be older, have a lower body mass index (BMI) and worse illness (achieved shorter 6-minute walk distances, demonstrated poor hemodynamics, were usually on IV prostacyclin and supplemental oxygen and reported worse health-related quality of life (HRQOL)).

Although palliative care is helpful for anyone with PH no matter their age or the severity of their disease, the results of this analysis show that very few patients are being referred to palliative care. Further studies are needed to identify facilitators of or obstacles to referrals to palliative care in PAH populations.