The burden of living through an unforeseen death in chronic obstructive pulmonary disease

In the more than 300 years since chronic obstructive pulmonary disease (COPD) appeared in medical literature as “voluminous lungs,” we have made significant progress in our understanding of the disease and its treatments. Nevertheless, COPD remains an incurable and and progressive disease, causing nearly 16 million adults in the United States to experience a significant burden of symptoms including shortness of breath, fatigue, and emotional distress, as well as premature death. Patients with COPD report a moderate-to-great impact on their daily lives, with progression and dynamic changes in their symptoms, abilities, and needs over time. Yet, the burden of COPD falls not just on patients but also their informal family caregivers. Caregivers help with disease and symptom management, tasks of daily living, emotional support, medical decision making, and, ultimately, the dying process. Unsurprisingly, COPD has a significant and dynamic impact on their lives as well; caregivers of individuals with COPD face adverse mental health outcomes, including anxiety, depression, and burnout. This emotional strain is often worsened by inadequate information from clinicians and by uncertainty about the future.

Expectations in chronic and progressive illness form the foundation of decision making, coping with disease, and preparing for the future. Patient- and family-centered care includes support for individualized health care choices aligned with their values given the context of the illness. Yet, that alignment cannot occur without consideration of the likely outcomes given those choices. Despite the essential role of expectations in comprehensive chronic illness care, understanding of the specific types of information and support caregivers seek, as well as how these needs evolve over time, remains poor. To provide foundational insights aimed at eventual improved support for caregivers of patients with COPD, Smirnova et al. conducted semi-structured interviews with 18 caregivers of patients with COPD who had died of respiratory-related illnesses in the preceding year. Using rigorous qualitative research methods, these interviews sought to better understand the perspectives and needs of caregivers and how they change over the disease course, particularly at key illness inflection points prior to death. While this study included only a small sample of caregivers, the interviews demonstrated that bereaved caregivers wanted roadmaps and anticipatory guidance with clearer and earlier discussion of what to expect as COPD progressed. They also identified critical markers of disease progression that were missed opportunities for caregiver support.

Remy Bremner, Joanna L Hart