5 things COPD patients want their doctors to know, according to real patients and caregivers

Chronic obstructive pulmonary disease (COPD) patients face complex challenges in their care, from difficulties accessing healthcare to inadequate education about managing their condition. These patients have three primary domains of unmet needs: First, a lack of sufficient information about the disease; second, inadequate physical, emotional, social, financial, and spiritual support; and third, gaps in overall care provision.^[]

Breathlessness dominates daily life

Breathlessness is more than just a symptom; it permeates nearly every aspect of a COPD patient's life, with many patients living in a constant state of anxiety about their breathing. As one described it, “The breathlessness when I’m really unwell makes everything such an effort, and it’s scary.”^[]

This debilitating symptom affects routine activities such as cooking, dressing, and household chores, as noted in a report from BCM Pulmonary Medicine.^[]

The mental and emotional toll is overwhelming

COPD patients endure emotional distress, including anxiety, depression, and fear—especially surrounding exacerbations and breathlessness.^[]

As one patient indicated, “I get COPD treated, not my COPD; look at me, not the computer when I come to see you—I want you to listen.”^[]

Another said, “[My] nurses and the doctors are too busy, and they do not seem to have time to talk to me about my worries. In a way, I think the doctors and nurses are tired of me because I have been hospitalised so many times.”^[]

Carrying medical equipment everywhere can also make some COPD patients feel embarrassed. As one patient shared on the website COPD Athlete: “I was diagnosed with COPD at the age of 47 and had never smoked a day in my life. I spent several months carrying a nebulizer machine with me wherever I went. I carried the machine to work with me, going to isolated places to take my treatments because I was embarrassed.”^[]

Patients want better education and resources

COPD patients frequently report that they lack sufficient education on managing exacerbations and self-care strategies. 

A caregiver for a COPD patient, Kristen Willard, shared with the COPD Foundation, “I wish perhaps most strongly that we had known there were so many things you could do to manage COPD successfully, steps we could take to set my father up for success. These included pulmonary rehabilitation, getting regular vaccinations, avoiding infections, using inhalers and nebulizers as intended, and approaching life in a way that allowed him to expend his remaining energy on things that were most important to him.”^[]

Post-hospitalization care is often inadequate

After discharge, COPD patients frequently feel abandoned by the healthcare system. Effective post-hospitalization care is critical, yet many patients lack regular follow-up appointments and preventive measures.^[]

There are too many barriers

COPD patients also struggle to access timely care and specialist consultations. In a focus group conducted by the American Lung Association, COPD patients expressed frustration with the lack of coordination and communication among their healthcare providers.^[] They felt that no one was overseeing their comprehensive care, leaving them to piece together their treatment plans.

Patients also felt inadequately educated about managing their disease and its progression. Furthermore, despite the availability of newer treatments, many were not informed about these options. 

Many live far from their healthcare providers or suffer financial and movement constraints, making regular visits challenging. While telemedicine can provide an avenue for quick consultations, it is not the norm for most patients. 

Additionally, despite the proven benefits of pulmonary rehabilitation—such as improved exercise tolerance and reduced dyspnea—fewer than 4% of Medicare beneficiaries with COPD access this care. Moreover, less than 2% of patients hospitalized for COPD exacerbations participate in pulmonary rehabilitation within 6 months of discharge.^[][]

Clearly, we need a better patient-centered approach that combines physical, emotional, and educational support for effective COPD management. To improve the care experience, physicians and pulmonologists can provide better education about rehabilitation programs, conduct regular mental health assessments, promote effective communication, and consider telemedicine for patients who have mobility issues.