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Article by Jordan Rosenfeld

Even after years of treating COPD patients, Dr. Cristine Oropez was surprised to learn one of her patients had spent two hours changing his bed sheets.

Bending over his bed, he told his support group, caused him terrible shortness of breath. “For anyone who hasn’t experienced that much impairment, it’s unfathomable,” Oropez said.

A pulmonologist with CareMore Health in Tuscon, Ariz., Oropez began attending COPD support groups alongside her patients to better understand their daily challenges. Up to that point, she said, she hadn’t fully realized the impact of the disease, such as how living on oxygen can pose challenges to a patient’s schedule and family when their lives revolve around how much air is in the tank. Or how isolated the disease makes them feel when they can’t hear the phone over the sound of their oxygen tank.

Patients may be reluctant to share these concerns because the chronic lung disease comes with a fair amount of stigma, as approximately 85% of cases are linked to smoking. Research shows that COPD patients may fear being blamed for their disease and avoid sharing relevant information with their healthcare provider.

“I don’t feel much emotional support from my general practitioner,” said Irv Weisser, a 90-year-old man with COPD from Bellevue, Wash. He says his pulmonary specialist is dedicated to helping him feel better, but he feels somewhat hopeless. “There is nothing they have not done that they can do.”

By attending peer support groups, Oropez has seen patients receive tips and advice their healthcare providers didn’t or couldn’t offer because they don’t live with the disease. In one example, a patient was having trouble showering because the humidity made him feel so lightheaded he feared he would pass out.

Another person in the group with the same problem offered solutions such as shaving before the shower, leaving the door open and the vent on.

“It was amazing watching patients work through problems together,” Oropez said.

Seeing beyond physical symptoms

Another of Oropez’s patients, an electrician, confided that his condition had forced him to give up the job he loved because he could no longer do it safely.

Treatment, Oropez discovered, could interfere with her patients’ ability to work as frequently as their symptoms. She watched patients struggle to choose between treatment for COPD and keeping their jobs, sometimes prioritizing their work schedule over medications, missing doses, and struggling to find a place to plug in an oxygen tank.

Being unable to work not only leads to a loss of income, Oropez said, but “the loss of the ability to commit to their job as they used to affects patients’ self-esteem.”

COPD patients want to be seen as people, not just a set of symptoms, said Teofilo Lee-Chiong, M.D. professor at National Jewish Health and Chief Medical Liaison at Phillips Sleep and Respiratory Care in Denver, Colo.

“At times we put too much emphasis on treatments for COPD,” he said, “instead of solutions for patients—less breathlessness during intimate relationships, for example.”

Treating the whole patient

Shawn Langwell, a 55-year-old man from Petaluma, Calif. has learned to live and even stay active with his mild COPD, but it does cause him some shame and discomfort when being intimate with his wife. “I sometimes lose my breath, and have to fight the urge to cough. I’m grateful to have a loving and supportive wife.”

Lee-Chiong feels that it’s important to balance improving outcomes that are policy-centric, such as hospital readmissions, with making a positive impact on patients’ lives.

He also has found that patients want to know the severity of their disease but are afraid to ask.

Indeed, Weisser has noticed that some of his providers avoid discussing questions that are important to him, such as, “How much time do I have left? What level of COPD am I in right now?”

He feels that his providers are so busy trying to help him maintain a baseline of health that these sorts of considerations are often left to the wayside.

“COPD is widely regarded as a ‘bad’ disorder because it is erroneously considered untreatable and debilitating.” While COPD is chronic, Lee-Chiong said, it doesn’t have to be debilitating so long as patients are given the right treatments and therapies.

In fact, while medications and oxygen are necessary for most COPD patients, they are not the only options, said Curtis Jantzi, D.O., a family physician with the Holsten Medical Group in Kingsport, Tenn. He offers his patients resources for breathing techniques, gentle exercise such as yoga and t’ai chi.

“Any type of intentional breath therapy, yoga or meditation helps improve lung function,” he said

If a patient is not capable of exercise like yoga, he encourages them to take ten deep breaths prior to a meal and hold it for three seconds. “They notice an improvement in their lung function, and I notice fewer recurring lung infections.”

Another overlooked area of discussion, Oropez said, is end-of-life care. By opening the lines of communication with patients, and showing empathy, healthcare providers can learn how to best help their COPD patients live their healthiest lives.

“COPD patients want to talk about end-of-life care, even if they’re not ready to make decisions,” she said. “I’ve had more patients tell me, even if through tears, that I was the first person willing to talk about what options there are at end of life.”

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