Abstract

ABSTRACT Objective To investigate differences in the understanding of terminal cancer and determine the relationship between this understanding and attitudes toward end-of-life issues. Design A questionnaire survey was performed between 2008 and 2009. Participants: A total of 1242 cancer patients, 1289 family caregivers, 303 physicians from 17 university hospitals, and 1006 participants from the general population responded (response rates: 90.1%, 95.1%, 81.0%, and 75.9%, respectively). Main outcome measures Individual understanding of terminal cancer and its relationship with preference for disclosure of terminal prognosis and critical end-of-life interventions. Results A “six-month life expectancy” was the most common understanding of terminal cancer (45.6%), followed by “treatment refractoriness” (21.1%), “metastatic/recurred disease” (19.4%), “survival of a few days/weeks” (11.4%), and “locally advanced disease” (2.5%). The combined proportion of “treatment refractoriness” and “six-month life expectancy” differed significantly between physicians and the other groups combined (76.0% vs 65.9%, P = 0.0003). Multivariate analyses showed that patients and caregivers who understood terminal cancer as “survival of a few days/weeks” showed more negative attitudes toward disclosure of terminal status compared with participants who chose “treatment refractoriness” (adjusted odds ratio [aOR] 2.39, 95% CI 1.26 to 4.54 for patients; aOR 2.94, 95% CI 1.58 to 5.47 for caregivers). Caregivers who understood terminal cancer as “metastatic/recurred” or “six-month survival” tended to disagree with withdrawing futile life-sustaining treatments (aOR 2.57, 95% CI 1.39 to 4.75 for “metastatic/recurred,” aOR 1.86, 95% CI 1.06 to 3.28 for “six-month survival”) and active pain control (aOR 2.29, 95% CI 1.13 to 4.64 for “metastatic/recurred”, aOR 1.86, 95% CI 0.97 to 3.54 for “six-month survival”), compared with caregivers who selected “treatment refractoriness.” Conclusion The understanding of terminal cancer varies among the four participant groups. It was associated with different preferences regarding end-of-life issues. Standardizing this terminology is needed to better understand end-of-life care. Disclosure All authors have declared no conflicts of interest.

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