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Background: Patients with terminal lung cancer and their families are challenged and stressed with the end of life discussions. Do Not Resuscitate (DNR) orders are a critical part of such discussions.  Objective: To understand the perceptions and preferences of patients with terminal lung cancer and their family caregivers around DNR discussions. .  Methods: Our quantitative component consisted of a pen-and-paper questionnaire that was followed by a ‘think aloud’ process to capture perceptions of participants in response to questionnaire items. Qualitative methods included content analysis and constant comparison techniques to identify, code, and categorize primary themes arising from ‘think aloud’ responses.  Results: In this pilot study, 10 patients with advanced stage lung cancer and nine family caregivers were enrolled from one tertiary cancer care centre. Three major themes and several sub-themes were identified reflecting participants’ psychosocial environment, emotional responses to DNR discussions, and suggestions to improve DNR discussions. Most of the time, both patients and caregivers perceived a supportive environment within their family unit. Some patients were uncertain about their disease extent but most had entertained thoughts about prognosis and DNR status prior to having a discussion with their physician. A range of situations stimulated the DNR discussion. Most patients were uncertain about identifying the most appropriate health care provider (HCP) for DNR discussion. While participants found DNR discussions distressing, patients maintained hope in the face of accepting a terminal diagnosis. There were mixed feelings about the reversibility of a DNR decision and concerns about the care of the patients after being stated as DNR. Participants desired their HCP to be emotionally sensitive, knowledgeable, respectful, and straightforward.  Conclusions: Most participants were open about their experiences with psychosocial supports and emotional reactions and made suggestions to HCP to improve DNR discussions. Further examination in larger longitudinal studies is required to validate the observations in the current study.

Perceptions and Preferences of Patients with Terminal Lung Cancer and Family Caregivers about DNR