The Understanding of Terminal Cancer and Its Relationship with Attitudes toward End-of-Life Care Issues

Abstract

BACKGROUND: Although terminal cancer is a widely used term, its meaning varies, which may lead to different attitudes toward end-of-life issues. The study was conducted to investigate differences in the understanding of terminal cancer and determine the relationship between this understanding and attitudes toward end-of-life issues.

METHODS: A questionnaire survey was performed between 2008 and 2009. A total of 1242 cancer patients, 1289 family caregivers, 303 oncologists from 17 hospitals, and 1006 participants from the general population responded.

RESULTS: A "6-month life expectancy" was the most common understanding of terminal cancer (45.6%), followed by "treatment refractoriness" (21.1%), "metastatic/recurrent disease" (19.4%), "survival of a few days/weeks" (11.4%), and "locally advanced disease" (2.5%). The combined proportion of "treatment refractoriness" and "6-month life expectancy" differed significantly between oncologists and the other groups combined (76.0% v. 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] 0.42, 95% confidence interval [CI] 0.22-0.79 for patients; aOR 0.34, 95% CI 0.18-0.63 for caregivers). Caregivers who understood terminal cancer as "locally advanced" or "metastatic/recurrent disease" showed a significantly lower percentage of agreement with withdrawal of futile life-sustaining treatment compared with those who chose "treatment refractoriness" (aOR 0.19, 95% CI 0.07-0.54 for locally advanced; aOR 0.39, 95% CI 0.21-0.72 for metastatic/recurrent).

CONCLUSIONS: The understanding of terminal cancer varied among the 4 participant groups. It was associated with different preferences regarding end-of-life issues. Standardization of these terms is needed to better understand end-of-life care.