Objectives The circumstances of advanced cancer heighten the need for affected individuals to communicate mortality-related concerns, although there may be obstacles to such communication. Managing Cancer and Living Meaningfully(CALM) is a supportive-expressive therapy designed to address such barriers and to facilitate communication of mortality-related concerns in patients and caregivers facing advanced disease. This study explores death-related distress in patients with advanced cancer and the perceived influence of CALM therapy on overcoming barriers to communication of this distress.
Methods Semistructured interviews were conducted with a subset of patients with advanced cancer (n=17) participating in a CALM phase III trial at a large urban regional cancer centre. Interviews were transcribed, and qualitative data were analysed using thematic analysis.
Results Death-related distress was experienced in terms of three key themes: diffuse and overwhelming fear, fear of uncertainty and fear of suffering. The perceived barriers to communicating such distress were as follows: reluctance of loved ones to discuss mortality-related issues and the participants´ own reluctance to discuss death-related concerns to protect their loved ones or themselves from distress. CALM therapists were perceived to facilitate discussions on dying and death in sessions and to support patients´ communication of death-related distress with healthcare providers and loved ones.
Conclusions Patients with advanced cancer perceive barriers to effective communication of death distress to be related to their own reluctance, as well as reluctance of their loved ones to address such fears. CALM therapy may help patients with advanced cancer to overcome obstacles to communication and to alleviate death-related distress.
Trial registration number NCT01506492.
- advanced cancer
- death-related distress
- terror management
- qualitative research
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Contributors EA, EW, RN and GR all contributed to study conception, design and data analysis. All authors participated in the interpretation of the data, the drafting or revising of the manuscript and final approval for publication.
Funding This research was supported in part by the Canadian Institutes of Health Research Grant#MOP106473, October 2010â€“September 2015 (GR, SH and CL), and by the Princess Margaret Cancer Foundation Hertz Centre Fund. The sponsors of this study had no role in study design, data collection,data analysis, interpretation of findings or writing of this report.
Competing interests None declared.
Ethics approval Study approval was obtained from the University Health Network Research Ethics Board.
Provenance and peer review Not commissioned; externally peer reviewed.