Study Finds Many Terminal Patients Unaware of Their Impending Death

Key Points

  • A sizable portion of terminally ill patients are unaware of basic information about their illness and impending death.
  • Patients who had recent discussions of prognosis/life expectancy with their oncologists had a better understanding of the terminal nature of their illness.
  • The study’s findings highlight the need for timely prognostic disclosures to terminally ill patients and suggests that oncologists discuss prognosis on an ongoing basis and as frequently as possible with their patients.

A sizable portion of patients with advanced cancer lack an understanding of their prognosis and impending death, according to a study by Epstein et al. However, those patients who had recent discussions of prognosis/life expectancy with their oncologists had a better understanding of the terminal nature of their illness. Having an accurate understanding of disease prognosis enables patients to make informed decisions about their care, according to the study.

The study’s findings highlight the need for timely prognostic disclosures to terminally ill patients and suggest that oncologists discuss prognosis on an ongoing basis and as frequently as possible with their patients. The study was published in the Journal of Clinical Oncology.

Study Methodology

The researchers analyzed recent and past oncology provider–patient discussions about prognosis/life expectancy that were drawn from the Coping With Cancer II (CwC-II) study, a National Cancer Institute–funded, prospective, multi-institutional cohort of patients with advanced cancer, including stage IV gastrointestinal, lung, or gynecologic cancer. The patients were refractory to prior chemotherapy, and oncologists expected them to die within 6 months; these patients were interviewed before and after a visit in which cancer restaging scan results were discussed. Illness understanding scores were measured by 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.

A total of 178 CwC-II participants who completed both pre- and post-scan visit interviews between January 2011 and February 2015 were included in the analysis.

Study Results

Before the restaging scan visit, 9 (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 they never had discussions of prognosis/life expectancy with their oncologists.

After adjustment for potential confounders, such as 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% confidence interval [CI] = 0.23–1.01; P = .002) and both recent and past (least-squares mean change score = 0.37; 95% CI = 0.04–0.70; P = .028) discussions of prognosis/life expectancy with their oncologists.

Assessing the Results

“We were astonished to learn that only 5% of this sample had sufficient knowledge about their illness to make informed decisions about their care,” said Holly G. Prigerson, PhD, the Irving Sherwood Wright Professor in Geriatrics and Co-Director of the Center for Research End-of-Life Care at Weill Cornell Medical College and a coauthor of this study, in a statement. “These were people with highly lethal metastatic cancers that had progressed after at least one prior line of chemotherapy; their life expectancy was approximately 4 months from our interview. Many did not know that they were at the end-stage of their illness or that their cancer was incurable. They were basically making treatment decisions in the dark.”

Patients with advanced cancer who acknowledged recent or ongoing discussion of their prognosis and/or life expectancy with their oncologists come to have a better understanding of the terminal status of their illness and may be better prepared to make informed end-of-life care decisions, concluded the researchers.

Funding for this study was supported by grants from the National Cancer Institute, the National Palliative Care Research Center, and the National Institute of Minority Health Disparities.

Authors’ disclosures of potential conflicts of interest are available at jco.ascopubs.org.

 

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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