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The Health Care Initiative for Improving End of Life in Pulmonary Hypertension (CARING)

J. Shipley

Daniel Grinnan


Keith Swetz


Janet Pinson


Paul Fairman


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Conference: 2011 PH Professional Network Symposium

Release Date: 09.22.2011

Presentation Type: Abstracts

J. Shipley, MD, D. Grinnan, MD, K. Swetz, MD, J. Pinson, NP, P. Fairman, MD
Virginia Commonwealth University Health Systems, Richmond, VA

BACKGROUND: Pulmonary arterial hypertension (PAH) is a progressive and fatal disease with patients dying from right heart failure. The mean time from the development of symptoms to the diagnosis of PAH is 34 months and the median time from diagnosis to death is 2.8 years. Although there are now several treatment options for PAH, these are not cures, and PAH continues to be a fatal disease. There has not been a study specifically examining the end-of-life issues in PAH. When does "end-of-life" really start? Retrospective symptom and satisfaction reporting are impossible to obtain from the patient. However, since PAH patients require significant care and assistance, loved ones are aware of the patients' symptoms and could perhaps answer some of these questions.

PURPOSE: To gain a "snapshot" of PAH patients' end-of-life by learning the location at the time of death, identifying which symptoms were prominent at the end of life, and discovering whether patients had knowledge about palliative or hospice resources.

DATA SOURCES: Families of patients that had died from PAH were sent a survey inquiring information about their loved one, information about the medical care received, and the Edmonton Symptom Assessment Scale (ESAS). The survey was sent with a cover letter describing the purpose of the investigation and assuring the families their responses would remain anonymous.

CONCLUSIONS: 26 responses were received from 46 mailings. The results of the survey showed a high symptom burden in PAH, a high percentage of patients died in the hospital, especially in the ICU setting, and despite moderate awareness of palliative care and hospice, there is a reluctance to involve these services. Awareness of the loved one's prognosis may provide families some peace of mind.

IMPLICATIONS FOR PRACTICE: Is there a misconception that PAH is curable because pharmaceutical agents are offered? Discussions with patients could include describing admissions to the ICU. Barriers to utilization of palliative and hospice services need to be better identified. Palliative care should be aimed at more aggressive control of dyspnea, fatigue, and appetite. Management of end-of-life symptoms may be more effective if ESAS or other QoL questionnaires were used clinically with PAH patients.