TY - JOUR
T1 - Interdisciplinary Communication
T2 - Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults with Cancer
AU - Watson, Anne
AU - Weaver, Meaghann
AU - Jacobs, Shana
AU - Lyon, Maureen E.
N1 - Publisher Copyright:
© 2019 by The Hospice and Palliative Nurses Association. All rights reserved.
PY - 2019/6/1
Y1 - 2019/6/1
N2 - Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.
AB - Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.
KW - adolescent and young adult
KW - advance care planning
KW - cancer
KW - electronic medical record
KW - end-of-life
KW - treatment preferences
UR - http://www.scopus.com/inward/record.url?scp=85065547081&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85065547081&partnerID=8YFLogxK
U2 - 10.1097/NJH.0000000000000512
DO - 10.1097/NJH.0000000000000512
M3 - Article
C2 - 30829829
AN - SCOPUS:85065547081
SN - 1522-2179
VL - 21
SP - 215
EP - 222
JO - Journal of Hospice and Palliative Nursing
JF - Journal of Hospice and Palliative Nursing
IS - 3
ER -