Patients with chronic obstructive pulmonary disease (COPD) often experience symptom burden and social isolation that is underappreciated by clinicians.
“Symptom burden can be as high as, or higher than, patients with cancer,” says Crystal E. Brown, MD, MA, an ICU nocturnist in the Division of Pulmonary, Critical Care, and Sleep Medicine at the University of Washington. Brown also is an ethics consultant at Harborview Medical Center in Seattle.
COPD patients are much more likely than lung cancer patients to die in hospital than at home, and they often lack palliative care, found a recent study.1 Researchers examined international death certificate data from 14 countries to determine place of death. They found that while patients with COPD suffer similar symptoms to lung cancer in their final days, few COPD patients receive palliative care or achieve their wish of dying at home. This may be partly due to the inherent unpredictability of final-stage COPD compared with lung cancer, the researchers theorize.
Recent research by Brown and colleagues demonstrated that patients with COPD were more likely to die in hospital, and had longer lengths of stay, compared to patients with cancer.2 Brown was lead author of an accompanying piece using the principle of justice to advocate for increased palliative care in patients with chronic lung disease, including those with COPD.3 “Patients with cancer benefit from palliative care,” says Brown. “Patients with COPD who have palliative care needs should similarly benefit as well.”
Predicting disease trajectory is part of the problem. With aggressive medical management, some patients have significant reversal of symptoms and disability. Kirsten Wentlandt, MD, PhD, MHSc, a palliative care physician at Toronto General Hospital in Canada explains, “No one knows when to say this is now an irreversible exacerbation of disease.”
Palliative care services and focused home care programs are set up to manage very sick patients. “They often do not know what to do when patients are well and independent,” says Wentlandt. Unlike cancer patients’ predictable deterioration over time, requiring escalation in level of care, COPD is a fluctuating chronic disease. “Variable deterioration and improvement requires a ‘flip-flop’ between surveillance and periods of high intervention,” says Wentlandt.
When patients are feeling well, they are turned down for home care. When they are sick, services are unsure how to support patients. “They lack practice, and haven’t developed protocols or relationships to keep patients at home and out of the emergency room,” says Wentlandt.
Randomized, controlled trials have validated several current palliative care models to support patients with cancer. However, these high-quality studies have not yet been conducted in most non-cancer disease states. “So, we have yet to see if these current models meet the needs of all of our patients,” says Wentlandt.
- Cohen J, Beernaert K, Van den Block L, et al. Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data. NPJ Prim Care Respir Med 2017; 27(1):14.
- Brown CE, Engelberg RA, Nielsen EL, et al. Palliative care for patients dying in the intensive care unit with chronic lung disease compared with metastatic cancer. Ann Am Thorac Soc 2016; 13(5):684-689.
- Brown CE, Jecker NS, Curtis JR. Inadequate palliative care in chronic lung disease. An issue of health care inequality. Ann Am Thorac Soc 2016; 13(3): 311–316.