Palliative care communication in COPD – patients’ preferences and clinicians’ judgements

Abstract

Chronic obstructive pulmonary disease (COPD) is a life-limiting illness characterised by progressive breathlessness and chronic cough that affects around 3 million people in the United Kingdom (UK). Patients with COPD have a high symptom burden, which is typically managed by means of aggressive and invasive treatments as patients approach the end of life. Although mortality rates are high, identifying with accuracy when patients are approaching the end of life is difficult and so there is uncertainty on when and how to initiate conversations about appropriate care plans with patients. To date, little research has focused on understanding patients’ and clinicians’ thoughts about the timing and nature of palliative care conversations.

This study aimed to understand COPD patients’ preferences for palliative care discussions; and explore clinicians’ opinions and experiences when holding these conversations.

The study is divided into 4 different phases that complement and inform each other. Phase 1 consisted of a systematic literature review that explored current evidence about palliative care discussions in COPD. The second phase looked at COPD patients’ preferences for palliative care discussions with clinicians. Thirty three patients at different stages of disease severity were interviewed, which included 8 patients with mild, 15 patients with moderate and 10 patients with severe and very severe COPD. Interviews used a semi-structured approach and data analysis was guided by interpretative phenomenological analysis (IPA). The third phase included interviews with 14 healthcare professionals that provided direct care to COPD patients. Clinicians from four different professional backgrounds were interviewed, including: general practitioners, practice nurses, COPD specialist nurses and COPD consultants. Interviews explored clinicians’ thoughts and experiences when holding conversations with patients, and were analysed using a thematic analysis approach. The fourth and last phase of the study comprised the data integration of the three research phases described above. The findings from the previous phases were combined using triangulation methods, integrated and discussed, to clearly answer the research question.

The overall findings suggest that palliative care discussions were conducted by unfamiliar clinicians to the patient, at a late stage in the illness trajectory and when patients were admitted to hospital. Late discussions seemed to be caused by difficulties in timing and initiating discussions, service rationing and clinicians’ and patients’ poor understanding about palliative care and COPD. As an example, palliative care was seen as end of life care and exclusive of life-sustaining treatments. Poor understanding about palliative care and COPD seemed to increase clinicians’ and patients’ reluctance in discussing palliative care, undermining open discussions about preferences for future care and the development of action plans. Furthermore, data integration suggests that patients and clinicians had opposing perspectives about the optimal timing and nature of discussions, which increased the complexity of conversations and prevented their start.

In contrast to current practice, some patients and most clinicians recommended early, gradual and informative discussions about palliative and future care/treatments. Early discussions were thought to facilitate the initiation and conduct of discussions and to reduce their emotional impact, enabling patients to participate fully. Thus, early discussions provide an opportunity for clinicians to understand how patients view and experience their condition and its treatments, and offer a treatment philosophy that suits patients’ preferences and is guided by principles of Burden of Treatment theory.

The current approach when discussing palliative care advocates a sudden change in care, from aggressive treatments to end of life care and does not meet patients’ needs. A new way of thinking about consultations where there is a dialogue that focuses on addressing patients’ needs, symptoms and priorities, whilst reducing treatment burden throughout the disease course is recommended. This new approach can create individualised care plans that meets patients’ needs and preferences.

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Identifiers

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

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