"If We Turned Our Backs, They Would Ignore Our Wishes"
Bereaved Family Perceptions of Concordance of Care at the End of Life
Published in: Journal of Palliative Medicine, Volume 24, No. 11, pages 1667–1672 (November 2021). doi: 10.1089/jpm.2020.0714
Posted on RAND.org on October 24, 2022
The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes.
To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored.
Mortality follow-back survey and in-depth interviews.
Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes.
The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes.
Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation.
Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.