“Can you tell me why you made that choice?”: A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant

Jennifer S. Needle, Cynthia Peden-McAlpine, Joan Liaschenko, Kara Koschmann, Noah Sanders, Angela Smith, Sandra E. Schellinger, Maureen E. Lyon

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Background: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. Aim: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. Design: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. Settings/participants: A total of 10 adolescent and young adult patients (aged 14–27 years) undergoing bone marrow transplant at an academic Midwest children’s hospital were involved in the study. Results: Influences on participants’ decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant’s concern over the perceived negative impact of discontinuing treatment on their families. Conclusion: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.

Original languageEnglish (US)
Pages (from-to)281-290
Number of pages10
JournalPalliative Medicine
Volume34
Issue number3
DOIs
StatePublished - Mar 1 2020

Bibliographical note

Funding Information:
The authors thank Janet Ziegler, MSW, Gabe Gebremichael, MSW, and Marie Rodier, MSW, for assistance in developing the protocol for this intervention, training as Respecting Choices? Next Steps Pediatric Advance Care Planning facilitators, and working tirelessly to provide for the psychosocial needs of these patients and families who participated in this study. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the American Cancer Society?Pilot and Exploratory Projects in Palliative Care (# PEP PCSM?129371) and the Children?s Cancer Research Fund (CCRF).

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the American Cancer Society—Pilot and Exploratory Projects in Palliative Care (# PEP PCSM–129371) and the Children’s Cancer Research Fund (CCRF).

Funding Information:
The author(s) declare the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: J.S.N. is currently receiving a grant from the Children’s Cancer Research Fund (CCRF research grant) and is supported by the Pilot and Exploratory Projects in Palliative Care of Cancer Patients and Their Families from the American Cancer Society (PEP-16-206-01-PCSM).

Publisher Copyright:
© The Author(s) 2019.

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

Keywords

  • Advance care planning
  • adolescents
  • decision-making
  • palliative care
  • young adults

PubMed: MeSH publication types

  • Journal Article
  • Research Support, Non-U.S. Gov't

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