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Do patients with lung cancer recall physician-initiated discussions about planning for end-of-life care following disclosure of a terminal prognosis?
  1. Gillian Horne1,
  2. Sheila Payne2 and
  3. Jane Seymour3
  1. 1Rowcroft Hospice, Torquay, UK
  2. 2Division of Health Research, Faculty of Health and Medicine, International Observatory on End of Life Care, Furness College, Lancaster University, Lancaster, UK
  3. 3Faculty of Medicine & Health Sciences, University of Nottingham, Queen's Medical Centre, Nottingham, UK
  1. Correspondence to Dr Gillian Horne, Rowcroft Hospice, Avenue Road, Torquay, TQ2 5LS, UK; gill.horne{at}rowcroft-hospice.org.uk

Abstract

Background Communicating with patients about their prognosis and goals of care, including offering opportunities to engage in advance care planning (ACP) is widely recognised as best practice. Little is known about terminally ill patients’ perceptions of communication and ACP practice following disclosure of their terminal prognosis.

Objectives To examine whether terminally ill patients with lung cancer and their relatives recall conversations with disclosing physicians, about their concerns, goals of care or any offers to engage in ACP.

Methods Qualitative study using semistructured interviews with patients and their family members. The study setting was a cancer centre and cancer unit in northern England.

Results 25 patients with advanced lung cancer (18 men and 7 women, aged 47–85) and 19 family members, mainly from lower social economic classes, took part in the study. Participants had little or no recall of physicians initiating discussions about their concerns, or goals of care and did not perceive that they had been provided with either information about or opportunities to engage in ACP. Some participants reported a sense of abandonment following the disclosure of a terminal prognosis. This sense was compounded by a range of difficult emotional experiences following the disclosure.

Conclusions It may be inappropriate to initiate discussions about end-of-life care planning immediately following the disclosure of a terminal prognosis. To avoid patients feeling abandoned physicians need to consider how they or another appropriate person can provide information and opportunities for terminally ill patients to engage in a process of ACP.

Trial registration number 06/Q2307/22.

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  • Received 16 September 2015.
  • Revision received 4 December 2015.
  • Accepted 10 January 2016.
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