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.
Anne Watson, PhD, MSc, BSN, RN, is case manager, Children's National Health System, Washington, DC.
Meaghann Weaver, MD, MPH, is attending physician, Children's Hospital and Medical Center Omaha, NE.
Shana Jacobs, MD, is attending physician, Children's National Health System, Washington, DC.
Maureen E. Lyon, PhD, is research scientist, Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children's Research Institute, and Department of Pediatrics, Children's National Health System; and George Washington School of Medicine and Health Sciences, Washington, DC.
Address correspondence to Anne Watson, PhD, MSc, BSN, RN, Case Management, Children's National Health System, 111 Michigan Ave NW, Washington, DC 20017 (firstname.lastname@example.org).
The authors have no conflicts of interest to disclose.
This research was supported in part by grant #PEP10-171-01-PCSM from the American Cancer Society, Children's National's Research Advisory Council Award, and CTSI-CN NCRR grant #UL1RR031988. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the American Cancer Society, Children's Hospital, or National Institutes of Health.
This trial has been registered with clinicaltrials.gov ID number NCT01670461.