Symptom trends in the last year of life from 1998 to 2010: a cohort study

Abstract

Background: Calls for improvement in end-of-life care have focused attention on the management of pain and other troubling symptoms at the end of life.

Objective: To describe changes in pain intensity and symptom prevalence during the last year of life from 1998 to 2010.

Design: Observational study.

Setting: The HRS (Health and Retirement Study), a nationally representative longitudinal survey of community-dwelling U.S. residents aged 51 years or older.

Participants: 7204 HRS participants who died while enrolled in the study and their family respondents.

Measurements: Proxy-reported pain during the last year of life and other symptoms for at least 1 month during the last year of life. Trends in pain intensity and symptom prevalence were analyzed for all decedents and within the categories of sudden death, cancer, congestive heart failure or chronic lung disease, and frailty.

Results: Between 1998 and 2010, proxy reports of the prevalence of any pain increased for all decedents from 54.3% (95% CI, 51.6% to 57.1%) to 60.8% (CI, 58.2% to 63.4%), an increase of 11.9% (CI, 3.1% to 21.4%). Reported prevalences of depression and periodic confusion also increased for all decedents by 26.6% (CI, 14.5% to 40.1%) and 31.3% (CI, 18.6% to 45.1%), respectively. Individual symptoms increased in prevalence among specific decedent categories, except in cancer, which showed no significant changes. The prevalence of moderate or severe pain did not change among all decedents or in any specific decedent category.

Limitation: Use of proxy reports and limited information about some patient and surrogate variables.

Conclusion: Despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010.

Primary funding source: National Institute of Nursing Research.

Conflict of interest statement

Potential Conflicts of Interest: Adam Singer, Daniella Meeker, Joan Teno, Joanne Lynn, and June Lunney all report no potential conflicts of interest. Karl Lorenz has served as a consultant to Otsuka Pharmaceuticals as a member of the Data Monitoring Committee for the Phase II development of Sativex, a novel cannabinoid analgesic.