From the Journals

ILD progression, not diagnosis, triggers palliative care



Most health care providers are comfortable recommending palliative care (PC) for their patients with interstitial lung disease (ILD), but most do so at the time of disease progression, rather than diagnosis, as indicated on survey data from 128 clinicians.

ILD is associated with a high mortality rate and profound symptoms that contribute to poor quality of life, Rebecca A. Gersen, MD, of Johns Hopkins University, Baltimore, and colleagues wrote.

“Nevertheless, there is often a lack of preparedness for death by both patients and providers, contributing to increased distress,” they said. Clinician perspectives on the use of PC for ILD patients have not been well studied, although PC is not limited to end-of-life care and is recommended for ILD patients by professional organizations, including the American Thoracic Society. “PC is successful in improving breathlessness in chronic lung disease and can increase survival.”

In a study published in the journal CHEST®, the researchers surveyed health care providers at 68 Pulmonary Fibrosis Foundation centers across the United States. The survey was sent and collected by email and a restricted social media platform. A total of 128 providers from 34 states completed the survey between October 2020 and January 2021. Of these, 61% were physicians, and 67% identified as White.

Overall, 95% of the respondents agreed or strongly agreed that addressing advance directives is important, but only 66% agreed or strongly agreed that they themselves addressed advance directives in the outpatient ILD clinic setting. A greater number (91%) agreed or strongly agreed that they had a high level of comfort in discussing prognosis, while 88% agreed or strongly agreed that they felt comfortable assessing a patient’s readiness for and acceptance of PC. Approximately two-thirds (67%) agreed or strongly agreed that they use PC services for ILD patients. There were no significant differences in responses from clinicians who had more than 10 years of experience and those who had less.

Of the providers who referred patients to PC, 54% did so at objective disease progression, and 80% did so at objective and/or symptomatic progress; 2% referred patients to PC at initial ILD diagnosis.

Lack of resources

Health care providers who reported that they rarely referred patients to palliative care were significantly more likely to cite a lack of local PC options (P < .01). Those who rarely referred patients for PC also were significantly less likely to feel comfortable discussing prognoses or advance directives in the ILD clinic (P = .03 and P = .02, respectively).

Among the 23% of responders who reported that they rarely referred patients, 66% said they did not have PC at their institution.

“In addition to understanding and addressing barriers to care, educational resources may be key to improving PC delivery to the ILD population,” the researchers wrote.

The study findings were limited by several factors, including voluntary participation, lack of a validated questionnaire, and use of self-reports, which may not reflect physicians’ actual practice, the researchers noted. Other limitations include the use of U.S. data only, which may not generalize to countries with different health care models.

However, the results were strengthened by the use of data from providers at a range of institutions across the United States and by the high overall survey response rate, the researchers said.

“While ILD providers reassuringly demonstrate knowledge and interest in PC involvement, no current system exists to facilitate and monitor response to referral,” they noted. “Future research is desperately needed to address barriers to the provision of PC in order to enhance access to a critical service in the management and care of patients with ILD.”

The study was supported by the National Heart, Lung, and Blood Institute. The researchers disclosed no relevant financial relationships.

A version of this article first appeared on

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