How Often Is End-of-Life Care in the United States Inconsistent with Patients' Goals of Care?

Abstract

One in eight respondents stated care in the last months of life was inconsistent with patients' wishes; such care was associated with worse ratings of care, pain management, and communication with clinicians.

Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015

“…27 Even though individuals may differ in their preferences regarding location of death, the ongoing trend toward stabilization of ICU use is an important marker of improvement.…”

Achieving Goal-Concordant Care: A Conceptual Model and Approach to Measuring Serious Illness Communication and Its Impact

“…A recent study found that, when compared with caregivers who reported goalconcordant care, those reporting goal-discordant care rated the quality of communication and quality of care lower. 82 Limitations of this approach include the potential for multiple biases [83][84][85] and challenges identifying surrogates. However, the Veterans Affairs administration's Bereaved Family Survey 86 and several mortality follow-back studies have demonstrated the feasibility of this approach.…”

Quality Measurement of Serious Illness Communication: Recommendations for Health Systems Based on Findings from a Symposium of National Experts

“…The Veterans Affairs Bereaved Family Survey uses such a measure and research instruments, including the National Health and Aging Trends Study, and multiple mortality follow-back studies have used this approach. 27,51,52 A recent review of goal-concordance measurement promoted this approach. 49 Still, while it can be incorporated into bereavement surveys, response rates of such surveys have been low in some settings 13 and do not reflect the perspective of the patient himself/herself.…”