Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

Background Research in the 1990s described serious symptoms at the end of life, and a 1997 Institute of Medicine report called for improvement. Hospice and palliative care have grown considerably since then. Objective To describe changes in pain intensity and symptom prevalence during the last year of life from 1998 to 2010. Design Observational study. Setting Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling US residents aged 51 and older. Participants 7,204 HRS participants who died while enrolled in the study, and their family respondents. Measurements Proxy-reported pain during the last year of life; depression, confusion, dyspnea, incontinence, fatigue, anorexia, and vomiting for a period of at least one month during the last year of life. Trends in pain intensity and symptom prevalence were analyzed among all decedents and those within cancer, congestive heart failure or chronic lung disease, frailty, and sudden death. Results Between 1998 and 2010, proxy reports of the prevalence of any pain (mild, moderate, or severe) increased for all decedents by 11.9% (95% CI: 3.1%, 21.4%). Reported prevalence of depression increased for all decedents by 26.6% (14.5%, 40.1%), for congestive heart failure or chronic lung disease by 27.0% (8.1%, 49.3%), and for frailty by 39.4% (9.9%, 79.8%). Reported prevalence of periodic confusion increased for all decedents by 31.3% (18.6%, 45.1%), for congestive heart failure or chronic lung disease by 24.9% (6.0%, 47.6%), for frailty by 20.3% (5.9%, 39.1%), and for sudden death by 45.7% (5.9%, 106.1%). Trends in the reported prevalence of most other symptoms in most groups of decedents were positive but not significant. Moderate or severe pain, severe fatigue, anorexia, and frequent vomiting did not show significant changes in any group of decedents. There were no significant changes for cancer. Limitation Proxy reports, mostly yes/no symptom questions. 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.