Patient-centered discussions about disease progression, symptom, and treatment burden in chronic obstructive pulmonary disease could facilitate the integration of end-of-life discussions in the disease trajectory: patient, clinician, and literature perspectives: a multimethod approach

Abstract

Background: patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life.

Objective: identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources.

Design: multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol.

Setting/Participants: thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom.

Results: clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques.

Conclusion: current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

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Identifiers

ORCID for Katherine J. Hunt: orcid.org/0000-0002-6173-7319

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