Quality-of-life trajectories at the end of life: assessments over time by patients with and without cancer

Abstract

Objectives: To compare quality-of-life (QOL) ratings of terminally ill patients with and without cancer over time.

Design: Secondary analysis of prospective data from a randomized clinical trial.

Setting: Trial conducted with terminally ill patients in Seattle, Washington, testing the efficacy of massage and guided meditation in improving patients' QOL.

Participants: One hundred sixty-seven trial participants, of whom 127 provided follow-up data and died before data analysis.

Measurements: At enrollment, participants reported demographic characteristics, symptom distress, QOL, and primary life-limiting diagnosis. At enrollment and at follow-up interviews after every two study-provided treatment sessions, participants rated their perceived quality of life on a scale from 0 (no quality of life) to 10 (perfect quality). At the end of the study, the investigators added measures of patient's survival status, number of days between study enrollment and death, and receipt of hospice services to the data set.

Results: Multilevel models showed significantly steeper QOL declines for patients with cancer than for those without after adjustment for time between study enrollment and death. Over a 4-month before-death period, the average patient without cancer was estimated to experience a QOL decline of approximately 0.6 on a scale from 0 to 10, compared with a 1.2-point decline for patients with cancer.

Conclusion: Patients with cancer face more-precipitous end-of-life challenges to quality of life than do other terminally ill persons. Therefore, clinicians must address QOL issues-not just symptom burden and distress. By introducing and discussing expected QOL declines at the end of life, clinicians may help to prepare, support, and reassure patients and their families.

Conflict of interest statement

Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper.

Figures

Figure 1. Cumulative Survival by Primary Diagnosis*

* Cumulative survival estimates are based on Kaplan-Meier analysis of 167 study enrollees, with 153 who had died by the time of analysis, and the remaining 14 censored.

Figure 2. Estimated Quality of Life Trajectories*

* Trajectories were estimated with multilevel modeling, using responses of 127 respondents over time, in a model including diagnosis and time from enrollment to death as predictors of the slope. The estimated trajectories depicted in the graph are for patients who enrolled in the study 123 days before death (the median for patients with cancer). Quality of life ratings could range from 0 (no quality of life) through 10 (perfect quality of life).