Introduction and objectives There are concerns that end of life care for people with chronic obstructive pulmonary disease (COPD) is inadequate. Advance care planning is recommended for these patients, with an aim of reducing unwanted interventions and influencing place of death, but it is currently rarely done. Healthcare professionals' perspectives on the reasons for this have been sought, but there is little information about patients' views. This research explores the opinions of patients with severe COPD on advance care planning, and how they feel it could be integrated into their care.
Methods A qualitative interview strategy was adopted, drawing from grounded theory techniques. Patients with severe COPD (according to Gold Standards Framework criteria1) were recruited from two primary and secondary care settings (n=10, 9M, 1F). Interviews using a broad topic guide were conducted in participants' homes, audio recorded and transcribed verbatim. Analysis was inductive, generating themes using techniques of constant comparison.
Results People with severe COPD wanted more information about diagnosis, and more discussion of their prognosis and future. They very much wanted to be involved in decisions about their current care. They were happy to discuss general treatment preferences for the future, but not to make binding advance decisions. They expected the initiation of these discussions to come from the healthcare team, especially those they feel they know. When information was inadequate or they felt they had not been included in decisions, the relationship with their healthcare team was damaged. Discussing these issues does not cause undue distress.
Conclusions A focus on encouraging formal binding advance decisions for people with severe COPD is not helpful. An advance care planning approach involving repeated discussions of disease status, prognosis and general preferences for future care would be more effective. Healthcare professionals should take responsibility for initiating these discussions. As well as improving end of life care, this improved information provision could improve relationships between patients and healthcare professionals, as well as enabling patients to be more involved in current decisions about their care.
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