First steps
According to specialists, the first step in the PC process with patients is to make sure they understand their conditions, their prognoses, and the role of palliative care itself.
Kathleen Oare Lindell, PhD, RN, associate professor of nursing at Medical University of South Carolina, Charleston, who specializes in PC in pulmonary disease, remembers taking the histories of patients with grim prognoses and “their look on their face was like, ‘I just have a common cold.’ ” In other cases, she said, patients may fear they’ll die immediately when they have 3-5 years to live.
Dr. Lindell, who has worked at a specialty center for patients with interstitial lung disease (ILD), emphasized the importance of speaking in layperson terms that patients understand, such as referring to idiopathic pulmonary fibrosis as “unknown lung scarring.” She also said it’s crucial to be up front about their prognoses.
As for patient understanding of PC, she said, “people think it’s hospice that they’re giving. Palliative care is neither. Instead, it helps to address symptom management, I always tell patients, ‘You’ll be scared, you’ll have a cough. There are medicines and nonpharmacological therapies [that can help], and that’s what palliative care does.’ ”
Keith Swetz, MD, an internist and palliative care specialist at the University of Alabama at Birmingham, agreed that a concise discussion of prognosis is vital. “What do they know about their illness, and what do they understand about what will happen when things get worse?” he said.
“With pulmonary disease, they may be looking at months to years punctuated with a lot of ICU admissions, trips to the hospital, symptom burden, and decline in function. Some will want aggressive treatment and say they’re fine being in the hospital, while others will say being comfortable at home is more important.”
Dr. Swetz’s patients commonly have COPD, interstitial lung disease, pulmonary fibrosis, or PH, and some may have concurrent heart failure. While their prognoses may be poor, he said, discussion about their wishes probably aren’t happening outside of the PC setting.
Or if they are happening, he said, they’re lower quality, boiling down complicated care questions to “Do you want us to do everything yes, or no?
“A lot of it has to do with time,” he said. “Clinicians are busy, they might have a full ICU or pulmonary clinic with 15 minutes to see patients. Sitting down and talking about these things isn’t something that’s prioritized or fits into the work stream very well, and often it hasn’t been reimbursed.”
There typically aren’t insurance hassles regarding referrals for PC, Dr. Iyer said, although finding available specialists may be challenging. A 2019 study projected a wave of retirements of older PC physicians over the next few years, and the ratio of patients to PC specialists may not return to 2019 levels for decades. Rural areas are especially shorthanded. But telehealth may improve access, Dr. Iyer said.
What’s next? Specialists are trying to pin down guidelines for when PC consultation is appropriate in pulmonary disease.
Triggers to PC
Dr. Iyer, Dr. Lindell and others authored a 2021 report in the journal CHEST that offers guidance about triggers for PC consultation. The authors cited four “levers” or triggers that are important: worsening lung function, severe symptoms or high burden of care needs, poor prognosis, and frequent severe exacerbations.
“The overall point here is that integrating palliative care into COPD practice isn’t an on-off switch; rather, it should be based upon multiple factors and can evolve over time,” they wrote.
They noted that, “patients with COPD accept palliative care as early as moderate COPD (FEV1 < 80%), so patients may be ready sooner than clinicians think.”
They added that, “if prognosis is such a concern that a clinician is considering referral for lung transplant evaluation, then concurrent referral to specialist palliative care should be routine practice.
Finally, frequent severe exacerbations, i.e. those that require hospitalization or an emergency room visit, carry a high risk for posthospitalization mortality and are ideal inflection points in the illness trajectory of COPD.”
In the big picture, the authors contend, “palliative care should be integrated early and concurrently with COPD-directed therapies, and its intensity should increase over time as symptoms, needs, and exacerbations worsen approaching EOL [end of life].”
None of the interviewees or other authors reported having any relevant conflicts for this story.