Physicians' Perspectives on Adolescent and Young Adult Advance Care Planning The Fallacy of Informed Decision Making

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Abstract

Advance care planning (ACP) is a process that seeks to elicit patients' goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades-when the treatment of one organ system creates complications in another system that needs to be treated-and a creation of a "new normal" following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents' autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.

Original languageEnglish (US)
Pages (from-to)131-142
Number of pages12
JournalThe Journal of clinical ethics
Volume30
Issue number2
StatePublished - 2019

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Advance Care Planning
young adult
Young Adult
Decision Making
physician
adolescent
Physicians
decision making
planning
Hematopoietic Stem Cells
Pediatrics
Transplants
Health Personnel
illness
Pediatric Intensive Care Units
Adult Stem Cells
Focus Groups
medical care
autonomy

Bibliographical note

Copyright 2019 The Journal of Clinical Ethics. All rights reserved.

PubMed: MeSH publication types

  • Journal Article

Cite this

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abstract = "Advance care planning (ACP) is a process that seeks to elicit patients' goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades-when the treatment of one organ system creates complications in another system that needs to be treated-and a creation of a {"}new normal{"} following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents' autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.",
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