Oncology nurse perceptions about life expectancy discussions: a cross-sectional study exploring what patients want to know, and why doctors don’t disclose

Abstract

Background: Sensitive and patient-centred discussion about life expectancy has clear benefits for patients with advanced cancer and their families. The perceptions of oncology nurses about disclosure of life expectancy, and the barriers to disclosure, have rarely been explored. Objectives/Aims/Hypotheses: To examine oncology nurses’ perceptions of the: (1) proportion of patients with advanced cancer who want, receive and understand estimates of life expectancy; (2) reasons why doctors may not provide estimates of life expectancy. Design: Cross-sectional survey. Methods: Australian oncology nurses who were members of a professional society or worked at a participating metropolitan cancer centre were emailed a link to an anonymous online survey. Participants provided socio-demographic characteristics and their perceptions about the proportion of patients with advanced cancer who (a) want, (b) are provided with, (c) receive and (d) understand estimates of life expectancy, as well as the reasons estimates of life expectancy may not be provided. Results: A total of 104 nurses participated. While 51% of nurses perceived that most patients (>75%) want to be provided with an estimate of their life expectancy, 63% of nurses reported that <50% of patients were provided with an estimate. Further, 85% of nurses indicated that <50% of patients understand the estimate. The most frequent reason nurses perceived doctors did not provide an estimate of life expectancy was because the doctor didn’t have an accurate idea of life expectancy (80.8%). Almost one-fifth of nurses (18.3%) thought that doctors did not provide estimates because they felt it was not their responsibility to do so. Conclusions: Strategies to ensure a patient-centred approach to life expectancy discussions with patients with advanced cancer are urgently needed. Impact statement: Oncology nurses perceive that many patients with advanced cancer are not provided with an accurate estimate of their life expectancy and few understand the information provided to them.

Keywords:

• life expectancy
• advanced cancer
• disclosure
• prognosis

Acknowledgements

We wish to acknowledge the contribution of the National Prevalence Study Advisory Group, and the Study Coordinators and data collectors at each participating site. We also wish to acknowledge Dr Sandy Clarke-Errey of the Statistical Consulting Centre, University of Melbourne, for providing statistical expertise. JB, AW, BH, RSF and JS conceived and designed the study procedures and materials. All authors contributed to the drafting of the manuscript and have read and approved the final manuscript.

Ethics statement

This study involved human participants. The study application and approval was a scientific research study. The University of Newcastle Human Research Ethics Committee (H-2017-0412) and the ethics committee of the participating health service (LNR/46591/PMCC-2018; 14 November 2018) approved the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by a Strategic Research Partnership Grant (CSR 11-02; RSF) from The Cancer Council NSW. JB is supported by a NHMRC-ARC Dementia Research Development Fellowship (1105809). BH is supported by a Colin Dodds Australian Rotary Health Postdoctoral Fellowship (G1801108). AW was supported by an Australian Research Council Discovery Early Career Research Award (DECRA; 150101262). JS is supported by Hunter Cancer Research Alliance and University of Newcastle PhD Scholarship. This research was also supported by infrastructure funding from University of Newcastle and Hunter Medical Research Institute.