TY - JOUR
T1 - Navigating a "good Death" during COVID-19
T2 - Understanding Real-Time End-of-Life Care Structures, Processes, and Outcomes Through Clinical Notes
AU - Franzosa, Emily
AU - Kim, Patricia S.
AU - Moreines, Laura T.
AU - McDonald, Margaret V.
AU - David, Daniel
AU - Boafo, Jonelle
AU - Schulman-Green, Dena
AU - Brody, Abraham A.
AU - Aldridge, Melissa D.
N1 - Publisher Copyright:
© 2024 The Author(s). Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact [email protected] for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site - for further information please contact [email protected].
PY - 2024/10/1
Y1 - 2024/10/1
N2 - Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care. Research Design and Methods: Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis. Results: Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death,"and emotional and spiritual support. Discussion and Implications: Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care.
AB - Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care. Research Design and Methods: Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis. Results: Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death,"and emotional and spiritual support. Discussion and Implications: Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care.
KW - Care coordination
KW - COVID-19
KW - End-of-life
KW - Geriatrics
KW - Hospice
UR - http://www.scopus.com/inward/record.url?scp=85204295494&partnerID=8YFLogxK
U2 - 10.1093/geront/gnae099
DO - 10.1093/geront/gnae099
M3 - Article
C2 - 39187989
AN - SCOPUS:85204295494
SN - 0016-9013
VL - 64
JO - The Gerontologist
JF - The Gerontologist
IS - 10
M1 - gnae099
ER -