Insights About Dying from the SUPPORT Project

Abstract

OBJECTIVES: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) project was a study of 9105 seriously ill patients, 4274 of whom died within 6 months. HELP, the Hospitalized Elderly Longitudinal Project, was an ancillary study, in four of the five SUPPORT hospitals, of 1286 persons aged 80 years and older, 321 of whom died within 6 months. This paper reviews the SUPPORT and HELP literature to bring together insights concerning the time near death of seriously ill patients. METHODS: We reviewed published reports from SUPPORT and HELP, specifically, demographics of dying; characteristics of a prognostic model to estimate survival; patient symptoms near death; patient preferences and decision‐making near death; ineffectiveness of the SUPPORT intervention; costs of dying while seriously ill; and the impact of serious illness on the family. We also compared and contrasted the experience of patients with different conditions. RESULTS: Patients in SUPPORT who died were typically younger than age 75. Most SUPPORT patients who died were male and most had an income of less than $11,000, although the older patients in HELP were even more likely to have had such low incomes. Patients with cirrhosis were much younger than most decedents, and patients with cancer were less often poor. Most had serious symptoms close to death. The place of death was more closely related to hospital bed supply than to decisions made by healthcare providers or individual patient preferences or characteristics. Prognosis near death was quite uncertain, especially in patients with heart and lung failure. CONCLUSIONS: Although SUPPORT aimed to describe and compare decision‐making affecting seriously ill patients, it also illuminated many other aspects of their course near death.

Symptom Distress in Patients With End-Stage Liver Disease Toward the End of Life

“…Fewer than 20 articles have been published on this population (A. Hamilton, personal communication, July 8, 2013). Several are sub-studies based on data from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) that used a sample of seriously ill hospitalized patients (Connors et al, 1995; Desbiens, Mueller-Rizner, Connors, Wenger, & Lynn, 1999; Desbiens & Wu, 2000; Desbiens et al, 1996; Freeborne, Lynn, & Desbiens, 2000; Roth, Lynn, Zhong, Borum, & Dawson, 2000). These studies focus on a limited number of symptoms such as pain, nausea, and anxiety, and do not address distress based on combined symptoms experienced by patients.…”

End of life care for older people admitted to hospital

“…The subsequent intervention phase involved use of a nurse specialist to assist with symptom control, communication and patient advocacy. SUPPORT included 9105 patients [14]. The median age of patients eligible for SUPPORT was lower than expected.…”

“…The median age of patients eligible for SUPPORT was lower than expected. Thus a cohort of 1286 patients aged over 80 years was added, forming the Hospitalised Elderly Longitudinal Project (HELP) [13–14]. The SUPPORT outcome measures included communication regarding resuscitation, understanding by physicians of their patients’ preferences, and pain control.…”

Hospice Care for the Incarcerated in the United States: An Introduction

“…However, with respect to end-of-life care, the concept of community standards may not be the best measure to use, as decades of research suggest that the medical community does a less-than-adequate job of providing care to the dying. [8][9][10][11][12][13] The Supreme Court did not intend to give correctional facilities license to perpetuate inadequate care by replicating substandard community practice.…”