Palliative care referrals by physicians remain low despite the potential benefits to the health-related quality of life for patients with pulmonary arterial hypertension (PAH), according to a new study published in Advances in Pulmonary Hypertension.

“Although current PAH-targeted therapies improve symptoms and pulmonary hemodynamics and delay disease progression, they are not curative, are commonly associated with adverse effects, and do not address all aspects of impaired [health-related quality of life] in PAH,” the authors said.

Studies show that palliative care is utilized in many other cardiopulmonary disorders such as congestive heart failure, interstitial lung disease, and chronic obstructive pulmonary disease. As in PAH, these patients experience debilitating physical, psychosocial, and spiritual concerns that may be improved through palliative care.


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It has been shown that palliative care can also help with advance care planning such as the completion of an advance directive and guidance navigating difficult decisions such as the provision of care and referral to hospice care. The assistance of a palliative care team can help ensure that the medical care received is in line with the patients’ preferences.

Read more about PAH prognosis

Several barriers to the earlier inclusion of palliative care were presented by the authors including patient and physician perceptions. The study pointed to previous survey results which showed that physicians had concerns about palliative care referral being perceived as “giving up hope.” They also felt that palliative care was not necessary for the quality of life and end-of-life needs of patients and believed that it couldn’t be administered concurrently with active disease-modifying therapies.

Current treatment guidelines currently don’t provide specific recommendations for when to make palliative care referrals, leading physicians to delay the referrals until the end of life when it is not very impactful. The authors proposed some clinical triggers that could initiate palliative care referral such as escalation of therapy, hospitalizations, referral for a lung transplant, or clinical deterioration.

“Improved evidence is needed to help determine the impact of [palliative care] on [health-related quality of life] and other important patient-centered outcomes in PAH and to help guide clinicians regarding patient selection and appropriate timing of [palliative care] referrals,” the authors concluded.

“We owe it to our patients to use all the available tools we have, including [palliative care], to alleviate their symptom burden, mitigate side effects of therapy, and ensure we are maintaining goal-consistent care that aligns with their values and wishes.”

Reference

Rhee LS, Morgan AA, DuBrock HM. Palliative care and pulmonary arterial hypertension. Adv Pulm Hypertens. 2022;21(1):7-11. doi:10.21693/1933-088x-21.1.7