The Pulmonary Fibrosis Foundation (PFF) has issued a position statement that recommends healthcare providers address the incorporation of palliative care early in the medical journey of patients living with pulmonary fibrosis (PF). Developed by an expert Task Force, the statement will guide providers to effectively address the subject of palliative care with patients and, ultimately, increase quality of life and survival of those living with PF. A version of the position statement written for patients is also available.
Palliative care encompasses all aspects of improving the well-being of patients living with serious illness and can augment the management of patients with PF by addressing symptoms, supporting caregivers, and aiding in end-of-life planning. Palliative care does not replace the medical decision-making of the primary pulmonologist. Instead, it aims to improve quality of life at every stage of illness, so that patients may live as fully as possible, even as disease limits them. Sadly, studies have shown that palliative care is an underutilized resource, as only a minority of patients who die from PF receive palliative care services, and unfortunately, most of these services are delivered in the last month of life.
"Soon after diagnosis, discussions of palliative care may offer reassurance that resources are available for managing symptoms and for future advance care planning" said Dr. Joseph Lasky, chief medical officer for the PFF. "Palliative care can offer peace of mind to patients as they face a life-threatening illness."
The position statement recommends healthcare providers raise the subject of palliative care early in the disease course of patients, so they are informed that there may be treatments to help ease symptom burden that are outside the expertise of their pulmonologist. While there may be challenges, the statement outlines best practices for overcoming common barriers to the introduction of palliative care at a time many patients are coming to terms with an uncertain future due to an unfamiliar disease. While the introduction of palliative care may take time and effort, so do decisions regarding drug therapy, pulmonary rehabilitation, clinical trials, or lung transplantation.
There are a number of resources available for providers to help introduce the subject of palliative care with patients. Many institutions have palliative care consult services, both for inpatients and outpatients. In addition, various "Bridge" programs offer a spectrum of services over the course of illness, progressing from assistance in basic needs such as home medical equipment, anxiolytics in more moderate illness, opioids in a progressive disease state, and full Hospice Care at the end of life. The PFF advises that pulmonologists who treat patients with PF explore palliative care resources available in their own communities to facilitate early referral.
PF includes a group of progressive lung diseases with various causes affecting more than 250,000 Americans. Over 50,000 new cases are diagnosed in the U.S. each year. For more information about PF, visit www.AboutPF.org.