“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 journalArticle

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)
JournalPalliative Medicine
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Advance Care Planning
Young Adult
Bone Marrow
Transplants
Decision Making
Communication
Quality of Life
Therapeutics
Decision Support Techniques
Pediatrics
Research

Keywords

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

Cite this

@article{081552a558c14d428911d981b0e69d06,
title = "“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",
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{\circledR} 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.",
keywords = "Advance care planning, adolescents, decision-making, palliative care, young adults",
author = "Needle, {Jennifer S.} and Cynthia Peden-McAlpine and Joan Liaschenko and Kara Koschmann and Noah Sanders and Angela Smith and Schellinger, {Sandra E.} and Lyon, {Maureen E.}",
year = "2019",
month = "1",
day = "1",
doi = "10.1177/0269216319883977",
language = "English (US)",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "SAGE Publications Ltd",

}

TY - JOUR

T1 - “Can you tell me why you made that choice?”

T2 - A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant

AU - Needle, Jennifer S.

AU - Peden-McAlpine, Cynthia

AU - Liaschenko, Joan

AU - Koschmann, Kara

AU - Sanders, Noah

AU - Smith, Angela

AU - Schellinger, Sandra E.

AU - Lyon, Maureen E.

PY - 2019/1/1

Y1 - 2019/1/1

N2 - 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.

AB - 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.

KW - Advance care planning

KW - adolescents

KW - decision-making

KW - palliative care

KW - young adults

UR - http://www.scopus.com/inward/record.url?scp=85074839951&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85074839951&partnerID=8YFLogxK

U2 - 10.1177/0269216319883977

DO - 10.1177/0269216319883977

M3 - Article

C2 - 31659933

AN - SCOPUS:85074839951

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

ER -