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

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

Research output: Contribution to journalArticle

1 Scopus citations


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
Issue number3
Publication statusPublished - Jun 1 2019



  • 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

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