Discuss Palliative Care Soon After Diagnosis, PF Foundation Urges

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Healthcare providers should broach the topic of palliative care — specialized care that may or may not include hospice — with pulmonary fibrosis (PF) patients shortly after they are diagnosed, according to a position statement recently issued by the Pulmonary Fibrosis Foundation (PFF).

“Soon after diagnosis, discussions of palliative care may offer reassurance that resources are available for managing symptoms and for future advance care planning,” Joseph Lasky, MD, chief medical officer of the PFF, said in a press release.

A specialized form of care, palliative care is given to severely ill people to improve their quality of life. In people with PF, this type of care generally aims to ease symptoms and support caregivers; it also can help with end-of-life planning.

“Palliative care can offer peace of mind to patients as they face a life-threatening illness,” Lasky said.

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How Palliative Care Can Help IPF Patients and Their Loved Ones

Importantly, although planning for the end of life can be part of palliative care, such care is not the same thing as hospice. Palliative care can be given alongside treatments that aim to prolong a person’s lifespan — its goal is to “[improve] quality of life by providing relief from symptoms and stress of illness.”

By contrast, hospice care — also called comfort care or end-of-life care — is given to people who are expected to live for less than six months. Hospice care focuses on maximizing a patient’s comfort and easing any pain.

The PFF’s position statement notes that, while palliative care can be beneficial for people diagnosed with PF, most patients never get a formal referral for this type of care. One likely reason for this gap, the foundation noted, is the misconception that this type of care is only meant for people nearing end of life.

“This Task Force recommends broaching the subject of [palliative care] early in the disease course, as most patients want to know what the future might hold and how they might face it,” the statement reads.

There also are other barriers that may make it difficult for patients with PF to discuss palliative care early on in their journey. Soon after diagnosis, most individuals are coming to terms with how the disease will affect them day-to-day, as well as making plans for treatment. Hence, there often is little time to broach the topic with their healthcare providers. Additionally, doing so may be uncomfortable.

However, palliative care services often prove valuable for patients, according to the PFF.

“Early in disease, discussions of [palliative care] may offer reassurance that resources are available for managing symptoms and for future advance care planning. Providers may fail to recognize the peace of mind this can offer patients as they face uncertain futures,” the PFF wrote in the statement.

According to the nonprofit, there are a number of resources that may aid healthcare providers in broaching the subject of palliative care with their patients. These include consult services which are offered to both inpatients and outpatients at many institutions, and “Bridge” programs that offer a wide variety of services throughout a patient’s disease journey.

“We advise that pulmonologists who treat patients with pulmonary fibrosis explore palliative care resources available in their own communities to facilitate early referral,” the statement concluded. 

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