Abstract Rationale Palliative care improves quality of life in patients with advanced cardiopulmonary disease, yet referral rates among pulmonary hypertension (PH) patients remain low, with prior studies reporting utilization of only 5.8%. Studies looking at barriers to referral in this population are limited. This study aimed to identify clinician-reported barriers to palliative care referral in PH patients. Methods We developed a 36-item survey assessing referral practices, barriers, and clinical scenarios influencing palliative care referral for PH patients. The survey was distributed through the Pulmonary Hypertension Association (PHA) professional listserv. Respondents provided demographic information, years of experience, and program characteristics. Descriptive statistics were used to analyze referral patterns and perceived barriers. Results A total of 40 clinicians responded, representing diverse geographic regions, years of clinical experience, and program sizes across the United States. Half of respondents reported referring 10-30% of PH patients to palliative care, which is higher than previously documented in the literature. The most frequently reported barriers included: (1) patient or family unwillingness to consider consultation, (2) perceived lack of need when patients improved on PH-specific therapies, and (3) PH clinician comfort managing end-of-life discussions independently. Respondents reported being more likely to refer patients with World Health Organization (WHO) Group 1 and Group 3 PH, those with cardiopulmonary comorbidities, and those requiring parenteral prostacyclin therapy. Within WHO Group 3 PH, clinicians were equally likely to refer patients with PH associated with Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD). Conclusions Clinicians reported higher referral rates to palliative care than previously described, which may represent a response bias. Significant barriers remain, including patient/family resistance, perceived lack of need in clinically improved patients, and provider self-sufficiency in end-of-life management. Reframing palliative care as supportive care throughout the disease trajectory, rather than solely at end of life, may help address these barriers. Interventions aimed at patient education and standardization of referral practices could improve integration of palliative care into PH management. This abstract is funded by: none
Jumper et al. (Fri,) studied this question.