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 lifesustaining 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. Key words: terminal cancer; end of life; terminology; life-sustaining treatment; palliative care. (Med Decis Making 2014;34:720–730)