A recent study published in the British Medical Journal has challenged the current assumptions supporting the provisions for end-of-life care for people with chronic obstructive pulmonary disease (COPD).
The study, titled “Living and Dying with Severe Chronic Obstructive Pulmonary Disease,” was developed to better understand the perspective of people with COPD as their illness progresses, as well as the perspectives of their professional and informal caretakers. Conducted through a number of qualitative interviews over an 18-month period, the study examined 21 patients, 13 informal caretakers (family members, friends, neighbors) and 18 professional caretakers nominated by the patients. During the study period, 11 patients died.
Through the interview process, researchers revealed that severe symptoms that caused major disruptions to normal life were often described as a “way of life” rather than an illness, and overall patients told a “chaos narrative” of their illness that was indistinguishable from their life story. Attitudes toward death were described as normal in an elderly population.
“People with very severe COPD have a well recognized burden of disabling physical symptoms (especially breathlessness), compounded by comorbidity, psychological distress, and social isolation,” wrote researchers. However, the chaos narrative has made it difficult for caretakers to define a point where palliative care might be appropriate.
Further, researchers believe that the policy focus on identifying a time to transition to palliative care has little resonance with patients based on the accounts described during the study. It may also be counterproductive if it distracts professional caretakers from timely consideration of providing much needed supportive care.