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.