Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal disease caused by thickening and scarring of lung tissue. With an average survival of three to four years from diagnosis and lung transplantation as the only definitive cure, these patients may be particularly well-suited for early palliative care intervention, with a focus on relieving symptoms, maximizing quality of life and advanced care planning.
New research from the University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC, recently published in the Journal of Palliative Care, was the largest single-center study to describe the patient and clinical factors associated with palliative care referral and its impact on mortality and location of death.
The study evaluated 828 IPF patients seen at the Simmons Center from 2000 to 2016 and found that palliative care referral recipients were older at diagnosis, had more severe medical conditions, resided closer to the treatment center and had more cumulative outpatient visits. This translated into less in-hospital deaths and more in-home and hospice deaths.
“These results demonstrate that patients who had more continuity of care with their pulmonologist may have additional insight into their disease process and perhaps were more open and comfortable to discussing palliative care referral,” said Dr. Kathleen Lindell, associate professor of medicine at the Simmons Center, Pulmonary, Allergy, and Critical Care Medicine Division at the University of Pittsburgh. “This study highlights the importance of discussing palliative care in this population.”
There is a growing emphasis on palliative care in IPF as clinicians become more aware of the significant physical and psychological burden of this unpredictable disease to patients and their caregivers. However, current guidelines do not describe when IPF patients should begin palliative care.
“This is the first report to describe provider influences on palliative care referral in the IPF population and highlights the importance of the patient-provider relationship in the introduction of end-of-life care,” said Dr. Richard Zou, Internal Medicine resident and incoming pulmonary/critical Care fellow at Pitt. “It is essential to inform patients and their caregivers about the role of palliative care early in the disease course.”