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A World of Maximalist Medicine: Physician Perspectives on Palliative Care and End-of-life for Patients With Pulmonary Arterial Hypertension

  • Crystal E. Brown
    Correspondence
    Address correspondence to: Crystal E. Brown MD, MA, Division of Pulmonary, Critical care and Sleep Medicine, 325 Ninth Ave, Seattle, WA 98104, USA. (P.O. Box 359763)
    Affiliations
    Division of Pulmonary, Critical Care, and Sleep Medicine (C.E.B., J.M.S., P.J.L., J.R.C., R.A.E.), University of Washington Seattle, WA, USA

    Cambia Palliative Care Center of Excellence at UW Medicine (C.E.B., J.M.S., J.R.C., R.A.E.), Seattle, WA, USA

    Department of Bioethics and Humanities (C.E.B.), University of Washington, Seattle, WA, USA
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  • Jill M. Steiner
    Affiliations
    Cambia Palliative Care Center of Excellence at UW Medicine (C.E.B., J.M.S., J.R.C., R.A.E.), Seattle, WA, USA

    Division of Cardiology (C.E.B., J.M.S., P.J.L., J.R.C., R.A.E.), University of Washington, Seattle, WA, USA
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  • Peter J. Leary
    Affiliations
    Division of Pulmonary, Critical Care, and Sleep Medicine (C.E.B., J.M.S., P.J.L., J.R.C., R.A.E.), University of Washington Seattle, WA, USA

    Department of Epidemiology (P.J.L.), University of Washington, Seattle, WA, USA
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  • J. Randall Curtis
    Affiliations
    Division of Pulmonary, Critical Care, and Sleep Medicine (C.E.B., J.M.S., P.J.L., J.R.C., R.A.E.), University of Washington Seattle, WA, USA

    Cambia Palliative Care Center of Excellence at UW Medicine (C.E.B., J.M.S., J.R.C., R.A.E.), Seattle, WA, USA
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  • Ruth A. Engelberg
    Affiliations
    Division of Pulmonary, Critical Care, and Sleep Medicine (C.E.B., J.M.S., P.J.L., J.R.C., R.A.E.), University of Washington Seattle, WA, USA

    Cambia Palliative Care Center of Excellence at UW Medicine (C.E.B., J.M.S., J.R.C., R.A.E.), Seattle, WA, USA
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      Abstract

      Context

      Physicians who specialize in pulmonary arterial hypertension (PAH) care for patients facing a serious, life-limiting illness. Palliative care is underutilized in patients with PAH, and little is known about how best to provide palliative care to this patient population.

      Objectives

      Using a qualitative approach, assess physicians’ perspectives on barriers and facilitators to the use of palliative care in PAH.

      Methods

      Participants were board-certified pulmonologists and cardiologists recruited from the Pulmonary Hypertension Association's list of physician specialists and academic center websites. We performed one-on-one semi-structured interviews that were recorded, transcribed, and analyzed using thematic analysis.

      Results

      Twelve physicians participated in the study, with a median age of 48.5 years and 20.5 years of clinical experience caring for patients with PAH. We identified the following themes and associated barriers and facilitators to effective implementation of palliative care for patients with PAH: a tailored approach to the individual patient; a PAH-specialist-led culture of care; effective collaboration with palliative care clinicians; and limitations imposed by health systems.

      Conclusion

      PAH physicians are open to palliative care for their patients and are willing to partner with palliative care clinicians to implement this effectively and in the right setting. Areas for targeted improvement in enhancing palliative care for patients with PAH exist, especially enhancing collaboration between PAH physicians and palliative care specialists and navigating barriers in health systems.

      Key Words

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