Identifying Palliative Care Needs in Advanced COPD

Key Takeaways

• In Germany, patients with advanced chronic obstructive pulmonary disease (COPD) and their informal caregivers described interconnected symptom, home-care, emergency, psychosocial, organizational, and information needs.
• Restricted mobility made office-based appointments difficult for some patients.
• Informal caregivers described uncertainty during exacerbations alongside practical and emotional burdens.
• Recipients associated palliative-care support with reassurance and relief, not a demonstrated treatment effect.

Breathlessness and limited mobility complicate everyday life in advanced chronic obstructive pulmonary disease (COPD), while care at home places practical demands on families. Schmidt-Stiedenroth and colleagues analyzed 53 individual interviews, including those of 17 adults with advanced COPD and 10 informal caregivers. Recruiting physicians identified eligible patients, who could invite involved informal caregivers; physicians were also approached through outreach and professional networks.

The remaining 26 interviewees were physicians in general practice, pulmonology, or palliative care. Patient eligibility included Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage 4 airflow obstruction (forced expiratory volume in one second [FEV1] below 30% predicted) and/or GOLD group E, plus the recruiting physician’s assessment that death within 12 months would not be surprising. Participants were adults able to interview in German. From February through November 2024, researchers conducted individual semistructured interviews, predominantly by telephone, and analyzed them using Kuckartz structuring content analysis supplemented by latent content analysis in MAXQDA software.

Investigators identified six interconnected domains: management of dyspnea and anxiety; home-based healthcare; emergency planning and support; psychosocial care; organizational support; and timely information about COPD and palliative care. Patients described fear of suffocation, difficulty dressing or washing, restricted mobility, and trouble reaching appointments; some said previously helpful symptom treatments offered less benefit. Caregivers described uncertainty during exacerbations, hands-on care, insurance and equipment administration, and less time for social activities or their own appointments. Physicians described gaps in home visits and favored emergency and advance care planning.

Some interviewed patients had received or were receiving palliative care, and some caregivers supported people receiving it. Recipients associated home visits, available emergency medication, and a person to contact with reassurance and relief across several areas of need. Some interviewees described considerable psychosocial distress without requesting professional psychosocial support when asked directly.

Some needs came from researchers’ interpretation of interviewees’ burdens or accounts of relief rather than direct requests. Participants were recruited through treating clinicians, interviewed in German, and situated within Germany’s care system; equivalent palliative-care service availability in the United States cannot be inferred. Perceived relief does not demonstrate symptom efficacy, fewer admissions, or reduced caregiver burden. The authors suggested that earlier information about disease progression and palliative care might increase acceptance and use, but did not observe such an increase.

Clinician Questions

How do general and specialized outpatient palliative care differ for advanced COPD in Germany?

For people with advanced COPD in Germany, general outpatient palliative care can be provided by general practitioners, specialists, and care services. Specialized outpatient palliative care is delivered by specialized teams for complex symptoms when general outpatient palliative care is insufficient. These are German service categories, not a treatment comparison or a description of U.S. coverage.

What opioid-prescribing reservations did physicians describe for breathlessness in advanced COPD?

Physicians were reluctant to prescribe opioids, including morphine, for breathlessness because they believed morphine was contraindicated or were concerned about addiction.