Interdisciplinary Communication

Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults with Cancer

Anne Watson, Meaghann S Weaver, Shana Jacobs, Maureen E. Lyon

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)215-222
Number of pages8
JournalJournal of Hospice and Palliative Nursing
Volume21
Issue number3
DOIs
StatePublished - Jun 1 2019

Fingerprint

Interdisciplinary Communication
Advance Care Planning
Terminal Care
Electronic Health Records
Documentation
Young Adult
Neoplasms
Family Conflict
Clinical Trials
Delivery of Health Care
Therapeutics
Research

Keywords

  • adolescent and young adult
  • advance care planning
  • cancer
  • electronic medical record
  • end-of-life
  • treatment preferences

ASJC Scopus subject areas

  • Community and Home Care
  • Advanced and Specialized Nursing

Cite this

Interdisciplinary Communication : Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults with Cancer. / Watson, Anne; Weaver, Meaghann S; Jacobs, Shana; Lyon, Maureen E.

In: Journal of Hospice and Palliative Nursing, Vol. 21, No. 3, 01.06.2019, p. 215-222.

Research output: Contribution to journalArticle

@article{f4f59e46e72547b2a848918cb9272485,
title = "Interdisciplinary Communication: Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults with Cancer",
abstract = "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.",
keywords = "adolescent and young adult, advance care planning, cancer, electronic medical record, end-of-life, treatment preferences",
author = "Anne Watson and Weaver, {Meaghann S} and Shana Jacobs and Lyon, {Maureen E.}",
year = "2019",
month = "6",
day = "1",
doi = "10.1097/NJH.0000000000000512",
language = "English (US)",
volume = "21",
pages = "215--222",
journal = "Journal of Hospice and Palliative Nursing",
issn = "1522-2179",
publisher = "Lippincott Williams and Wilkins",
number = "3",

}

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 S

AU - Jacobs, Shana

AU - Lyon, Maureen E.

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

VL - 21

SP - 215

EP - 222

JO - Journal of Hospice and Palliative Nursing

JF - Journal of Hospice and Palliative Nursing

SN - 1522-2179

IS - 3

ER -