Most terminal cancer patients are not aware they are approaching the end

Two third of terminal illness patients do not discuss their treatment goals, prognosis/life expectancy with their oncologists

Abstract

Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer, American Society of Clinical Oncology, May 23, 2016.

Image “Blowing in the wind” by Benn Berrigan.

Purpose
Accurate illness understanding enables patients to make informed decisions. Evidence of the influence of prognostic discussions on the accuracy of illness understanding by patients would demonstrate the value of discussions.

Methods
Recent and past oncology provider-patient discussions about prognosis/life expectancy were examined for their association with changes in illness understanding by patients. Patients (N = 178) with advanced cancers refractory to prior chemotherapy whom oncologists expected to die within 6 months were interviewed before and after a visit in which cancer restaging scan results were discussed. Illness understanding scores were the sum of four indicator variables: patient terminal illness acknowledgment, recognition of incurable disease status, knowledge of the advanced stage of the disease, and expectation to live months as opposed to years.

Results
Before the restaging scan visit, nine (5%) of 178 patients had completely accurate illness understanding (ie, correctly answered each of the four illness understanding questions). Eighteen patients (10%) reported only recent discussions of prognosis/life expectancy with their oncologists; 68 (38%) reported only past discussions; 24 (13%) reported both recent and past discussions; and 68 (38%) reported that they never had discussions of prognosis/life expectancy with their oncologists. After adjustment for potential confounders (ie, education and race/ethnicity), analysis identified significant, positive changes in illness understanding scores for patients in groups that reported recent only (least-squares mean change score, 0.62; 95% CI, 0.23 to 1.01; P = .002) and both recent and past (least-squares mean change score, 0.37; 95% CI, 0.04 to 0.70; P = 0.028) discussions of prognosis/life expectancy with their oncologists.

Conclusion
Patients with advanced cancer who acknowledge recent or ongoing discussions of prognosis/life expectancy with their oncology providers come to have a better understanding of the terminal nature of their illnesses and, thus, may be better prepared to make informed end-of-life care decisions.

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