Background: The information needs of patients with chronic obstructive pulmonary disease (COPD) towards the end of life are poorly understood.
Aim: This study explored the views of patients with COPD and healthcare professionals, focusing upon information needs and treatment preferences.
Method: In-depth, semi-structured interviews were held with patients with COPD following admission to hospital with respiratory failure, and focus groups held with healthcare professionals from hospital and community settings.
Results: Ten patients were interviewed, who had a median 4 previous hospital admissions, and had smoked for median 47 years. Five focus groups were held with 31 healthcare professionals (18 nurses, 7 doctors, 6 allied health). The theme underpinning all discussions was of tension between maintaining hope and negotiating the reality of the illness and its consequences. Within this theme, patients tended to be optimistic, viewed acute exacerbations as separate from their underlying chronic illness, and were keen for intensive treatments, including intubation if acutely unwell. They had little understanding of the complexities of decision-making around treatment escalation. Both patients and health workers believed that information around end of life should be offered routinely, but delivered in a manner that recognises and maintains a form of hope.
Conclusion: Patients and healthcare professionals believe information around illness course, future goals and treatment is important to care. An expanded view of hope may assist when providing such information, including when discussing goals of care in the setting of advanced illness.