Skip to main content

Advertising Disclaimer »

Main menu

  • Journals
    • Pediatrics
    • Hospital Pediatrics
    • Pediatrics in Review
    • NeoReviews
    • AAP Grand Rounds
    • AAP News
  • Authors/Reviewers
    • Submit Manuscript
    • Author Guidelines
    • Reviewer Guidelines
    • Open Access
    • Editorial Policies
  • Content
    • Current Issue
    • Online First
    • Archive
    • Blogs
    • Topic/Program Collections
    • AAP Meeting Abstracts
  • Pediatric Collections
    • COVID-19
    • Racism and Its Effects on Pediatric Health
    • More Collections...
  • AAP Policy
  • Supplements
  • Multimedia
    • Video Abstracts
    • Pediatrics On Call Podcast
  • Subscribe
  • Alerts
  • Careers
  • Other Publications
    • American Academy of Pediatrics

User menu

  • Log in

Search

  • Advanced search
American Academy of Pediatrics

AAP Gateway

Advanced Search

AAP Logo

  • Log in
  • Journals
    • Pediatrics
    • Hospital Pediatrics
    • Pediatrics in Review
    • NeoReviews
    • AAP Grand Rounds
    • AAP News
  • Authors/Reviewers
    • Submit Manuscript
    • Author Guidelines
    • Reviewer Guidelines
    • Open Access
    • Editorial Policies
  • Content
    • Current Issue
    • Online First
    • Archive
    • Blogs
    • Topic/Program Collections
    • AAP Meeting Abstracts
  • Pediatric Collections
    • COVID-19
    • Racism and Its Effects on Pediatric Health
    • More Collections...
  • AAP Policy
  • Supplements
  • Multimedia
    • Video Abstracts
    • Pediatrics On Call Podcast
  • Subscribe
  • Alerts
  • Careers

Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

American Academy of Pediatrics
Article

New and Lingering Controversies in Pediatric End-of-Life Care

Mildred Z. Solomon, Deborah E. Sellers, Karen S. Heller, Deborah L. Dokken, Marcia Levetown, Cynda Rushton, Robert D. Truog and Alan R. Fleischman
Pediatrics October 2005, 116 (4) 872-883; DOI: https://doi.org/10.1542/peds.2004-0905
Mildred Z. Solomon
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Deborah E. Sellers
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Karen S. Heller
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Deborah L. Dokken
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Marcia Levetown
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Cynda Rushton
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Robert D. Truog
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Alan R. Fleischman
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • Article
  • Figures & Data
  • Info & Metrics
  • Comments
Loading

This article requires a subscription to view the full text. If you have a subscription you may use the login form below to view the article. Access to this article can also be purchased.

Download PDF

Abstract

Objectives. Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study’s objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making.

Methods. Three children’s hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines.

Results. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, “At times, I have acted against my conscience in providing treatment to children in my care.” For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, ∼20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, “Sometimes I feel we are saving children who should not be saved,” as agreed with the statement, “Sometimes I feel we give up on children too soon.” However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, “Sometimes I feel the treatments I offer children are overly burdensome.” Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92–98%, depending on specialty) and nurses (range: 83–85%) rated themselves as somewhat to very knowledgeable regarding ethical issues.

Conclusions. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians’ regard for the dead-donor rule.

  • pediatric palliative care
  • end-of-life care
  • clinical decision-making
  • pain management
  • ethics
  • Accepted January 5, 2005.
  • Copyright © 2005 by the American Academy of Pediatrics

Individual Login

Log in
You will be redirected to aap.org to login or to create your account.

Institutional Login

via Institution

You may be able to gain access using your login credentials for your institution. Contact your librarian or administrator if you do not have a username and password.

Log in through your institution

If your organization uses OpenAthens, you can log in using your OpenAthens username and password. To check if your institution is supported, please see this list. Contact your library for more details.

Pay Per Article - You may access this article (from the computer you are currently using) for 2 days for US$25.00

Regain Access - You can regain access to a recent Pay per Article purchase if your access period has not yet expired.

Offer Reprints

PreviousNext
Back to top

Advertising Disclaimer »

In this issue

Pediatrics
Vol. 116, Issue 4
1 Oct 2005
  • Table of Contents
  • Index by author
View this article with LENS
PreviousNext
Email Article

Thank you for your interest in spreading the word on American Academy of Pediatrics.

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
New and Lingering Controversies in Pediatric End-of-Life Care
(Your Name) has sent you a message from American Academy of Pediatrics
(Your Name) thought you would like to see the American Academy of Pediatrics web site.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Request Permissions
Article Alerts
Log in
You will be redirected to aap.org to login or to create your account.
Or Sign In to Email Alerts with your Email Address
Citation Tools
New and Lingering Controversies in Pediatric End-of-Life Care
Mildred Z. Solomon, Deborah E. Sellers, Karen S. Heller, Deborah L. Dokken, Marcia Levetown, Cynda Rushton, Robert D. Truog, Alan R. Fleischman
Pediatrics Oct 2005, 116 (4) 872-883; DOI: 10.1542/peds.2004-0905

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero
Share
New and Lingering Controversies in Pediatric End-of-Life Care
Mildred Z. Solomon, Deborah E. Sellers, Karen S. Heller, Deborah L. Dokken, Marcia Levetown, Cynda Rushton, Robert D. Truog, Alan R. Fleischman
Pediatrics Oct 2005, 116 (4) 872-883; DOI: 10.1542/peds.2004-0905
del.icio.us logo Digg logo Reddit logo Twitter logo CiteULike logo Facebook logo Google logo Mendeley logo
Print
Download PDF
Insight Alerts
  • Table of Contents

Jump to section

  • Article
    • Abstract
    • METHODS
    • RESULTS
    • DISCUSSION
    • CONCLUSIONS
    • Acknowledgments
    • Footnotes
    • REFERENCES
  • Figures & Data
  • Info & Metrics
  • Comments

Related Articles

  • No related articles found.
  • PubMed
  • Google Scholar

Cited By...

  • Ethical climate in contemporary paediatric intensive care
  • Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres
  • Always a burden? Healthcare providers perspectives on moral distress
  • Applications of Grief and Bereavement Theory for Critical Care Nurses
  • Cancer care in Romania: challenges and pitfalls of children's and adolescents' multifaceted involvement
  • Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
  • Moral distress within neonatal and paediatric intensive care units: a systematic review
  • Cause of Death of Infants and Children in the Intensive Care Unit: Parents Recall vs Chart Review
  • Burnout and Resilience Among Nurses Practicing in High-Intensity Settings
  • Extracorporeal Membrane Oxygenation for Pediatric Cardiac Arrest
  • Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values
  • Judging the Quality of Mercy: Drawing a Line Between Palliation and Euthanasia
  • Facing Persistent Challenges in Pediatric Decision-Making: New Hastings Center Guidelines
  • Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations
  • Ethics: End-of-life decision-making in a pediatric patient with SMA type 2: The influence of the media
  • Pediatric Nurses' Perceptions of Obstacles and Supportive Behaviors in End-of-Life Care
  • Analgesics, sedatives and neuromuscular blockers as part of end-of-life decisions in Dutch NICUs
  • Medical End-of-Life Decisions: Experiences and Attitudes of Belgian Pediatric Intensive Care Nurses
  • Who Will Speak for Me? Improving End-of-Life Decision-Making for Adolescents With HIV and Their Families
  • Physician Medical Decision-making at the End of Life in Newborns: Insight Into Implementation at 2 Dutch Centers
  • Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review
  • Pediatric Palliative Care: Relationships Matter and So Does Pain Control
  • Google Scholar

More in this TOC Section

  • Neighborhood Child Opportunity Index and Adolescent Cardiometabolic Risk
  • Neonates Born to Mothers With COVID-19: Data From the Spanish Society of Neonatology Registry
  • Comparison of Manual and Automated Sepsis Screening Tools in a Pediatric Emergency Department
Show more Articles

Similar Articles

Subjects

  • Administration/Practice Management
    • Standard of Care
  • Fetus/Newborn Infant
    • Fetus/Newborn Infant
  • Ethics/Bioethics
    • Ethics/Bioethics
  • Journal Info
  • Editorial Board
  • Editorial Policies
  • Overview
  • Licensing Information
  • Authors/Reviewers
  • Author Guidelines
  • Submit My Manuscript
  • Open Access
  • Reviewer Guidelines
  • Librarians
  • Institutional Subscriptions
  • Usage Stats
  • Support
  • Contact Us
  • Subscribe
  • Resources
  • Media Kit
  • About
  • International Access
  • Terms of Use
  • Privacy Statement
  • FAQ
  • AAP.org
  • shopAAP
  • Follow American Academy of Pediatrics on Instagram
  • Visit American Academy of Pediatrics on Facebook
  • Follow American Academy of Pediatrics on Twitter
  • Follow American Academy of Pediatrics on Youtube
  • RSS
American Academy of Pediatrics

© 2021 American Academy of Pediatrics