Background Advance care planning is recommended for patients with chronic obstructive pulmonary disease (COPD), aiming to reduce unwanted interventions, improve communication and influence place of death. Currently this is rarely done. Healthcare professionals' perspectives on the reasons for this have been sought, but there is little information about patients' views.
Aims To explore the views of patients with severe COPD on advance care planning and how they feel it could be best integrated into their care.
Method A qualitative interview strategy was adopted, drawing from grounded theory. Patients with severe COPD (gold standards framework criteria) were recruited from primary and secondary care until saturation was reached (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 Participants wanted to discuss their future preferences and concerns with healthcare professionals, but did not feel comfortable making binding advance decisions and wanted to revisit these discussions regularly. Participants were not distressed by these discussions. Some participants felt more comfortable discussing future preferences with healthcare professionals they knew, others were comfortable with any healthcare professional involved in their care. Participants identified wanting more information about their diagnosis including prognosis early in their illness, but thought advance care planning would be more appropriate later. They expected their healthcare practitioner to initiate advance care planning discussions.
Conclusions Advance care planning discussions could have a useful role in the care of patients with severe COPD, and fit with what patients expect from their healthcare team. Distress could be minimised by sensitive exploration, ideally within an established healthcare relationship. Regular discussion of disease status and likely progression, identified as being wanted from an early stage, could establish a good background to later discussion of advance care planning.
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