Communicating uncertainty: contrasting the communication experiences of patients with advanced COPD and incurable lung cancer

Nothando Ngwenya, Clare Crang, Morag Farquhar, Robert C. Rintoul, Ravi Mahadeva, Lori D. Calvert, Scott A. Murray, Stephen Barclay

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes.

Objective: This study sought to identify factors that impact communication and support and recommend ways to improve patients’ understanding of living with life-threatening illness.

Methods: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010–12.

Results: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians.

Conclusions: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the ‘breaking bad news’ conversation that oncologists are highly trained to deliver.
Original languageEnglish
Pages (from-to)637–643
Number of pages7
JournalFamily Practice
Volume38
Issue number5
Early online date19 Apr 2021
DOIs
Publication statusPublished - Oct 2021

Keywords

  • Advance care planning
  • chronic obstructive pulmonary disease (COPD)
  • health communication
  • lung cancer
  • primary health care
  • uncertainty

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