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Palliative Care Involvement in Pulmonary Arterial Hypertension Patient Care: Single-Center Experience

S. Paulus

J Fowler

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Conference: 2018 PHA International PH Conference & Scientific Sessions

Release Date: 06.28.2018

Presentation Type: Abstracts

File Download: Conference 2018_1068

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2018 International PH Conference and Scientific SeAbstract presented at the 2018 International PH Conference and Scientific Sessions in Orlando, Fla., June 28-July 1, 2018.

Background

Medical advances and increased therapy options have helped to improve survival rates in patients with pulmonary arterial hypertension (PAH). Still, throughout the treatment course, individuals will experience various challenges related to expected medication effects, symptom burden, and stress from their progressive, chronic disease. Palliative care can provide an extra layer of support to help address these challenges and improve quality of life for PAH patients.

Methods

Assembly of information regarding triggers for palliative care and the role of palliative care in PAH patients at our center.

Results

Our providers and nurse coordinators attended a brief seminar on how to introduce palliative care to patients and learn triggers for when to refer patients in order to streamline the involvement of palliative care (Table 1). All PAH patients seen at our center have easy access to palliative care since we have a designated palliative care nurse practitioner in our clinic. When a patient meets a trigger for palliative care, they are referred for consultation. Uniquely, two patients (1 female, age 84 and 1 male, age 75) both with WHO group I PAH associated with congenital heart disease on IV Remodulin received palliative care in their home. Both patients initially met with palliative care in the outpatient clinic and were then set up with in-home services. One patient had visits from a nurse practitioner associated with our healthcare system and the other patient had services through a private agency. They were able to be seen in their home (versus traveling to the clinic) and were provided medical therapy for pain relief and ease of breathing. Eventually, they transitioned to a comfort care focus. They received their last shipment of Remodulin when they entered hospice and were weaned down and off of it. Both patients’ families called to report they died peacefully at home approximately one month after entering hospice.

Conclusions

Many opportunities exist to integrate palliative care into care for PAH patients to help improve quality of life during active treatment and when patients decide to transition to a comfort care focus. Palliative care should have an active role in the care for PAH patients.

 

Table 1: Palliative Care Triggers