Hot Topics: Pediatrics

Blog Posts (43)

November 16, 2017

Enhancing Pediatric Decision-Making: Australian Law Allows Children to Complete Advanced Directives

It always interesting to see how different countries handle pediatric decision-making in health care. For example, Australia now has shifted more towards respecting minors’ autonomy with its recent legislation. I first heard about this law during the Legal Update at the American Society of Bioethics and Humanities Annual Meeting this past October. The new law in Victoria, Australia coming into effect in March 2018 will require physicians to honor advanced directives written by children. Any child with capacity will be allowed to write their own advanced directives. There is no age limit as for who can write an advanced directive. The advanced directives must still be signed and witnessed, like adult advanced directives, and one of the witnesses must be a medical practitioner who must certify the person appears to have decision-making capacity and understands the effect of statements made.

This law will in essence create a situation where substituted judgment standard of decision making may become applicable. Traditionally, we use best interests’ standard for decision making in children because they are presumed to lack capacity and therefore can not make valid past preferences. However, if an advanced directive written by a child is valid, then we would have valid preferences and some evidence in order to navigate substituted judgment on behalf on the child patient. This will expand decision-making standards for children as well as avoid concerns of parents not having best interests of the child in mind.

This law will also call into question the practice of using assent verse consent for minors. The law is giving weight and value to a written stated preference but yet, we may not be honoring the verbal preferences of those same individuals. For example, a 15-year-old could write an advanced directive that would be valid but verbal consent for that same 15-year-old may not be valid if we are operating under the same traditional parental authority/ child assent model. It reinforces the age-old presumption that a written preference is more valid than a verbal preference, simply because it can last the trial of time and is an easier form of evidence to prove. Granted, the design of advanced directives is to govern in the future when the individual loses capacity. However, advanced directives also operate under the premise that the individual completing them have capacity to do so, implicitly also the capacity to consent to treatment. This new law gives children some authority for their future selves but no authority around their current selves.

For those in favor of including children in the health care decision making process, this seems like a great idea. This may also seem like a great idea for proponents of increasing advanced health care planning. However, it some ways this exacerbates the issues raised both in considering pediatric decision-making and honoring advanced directives. For example, should an adolescent patient make decisions for their future adult self (the unresolvable question of how much control the present self should have over the future self)? This seems more applicable to the pediatric population as developmentally adolescents are changing so much over a short period of time (in comparison to a lifespan). Having such a law makes sense for terminally-ill mature minors with capacity who may not live for a full lifespan, assuming of course they have contemplated, understand, and appreciate their medical circumstances. What a child may want one day may dramatically change the next. It is a step forward to properly enhancing children in health care decision making but it should be a cautionary step forward. Overall, this raises the question of how much autonomy is truly necessary for healthcare decision making. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and a Graduate Certificate in Clinical Ethics. For more information on AMBI's online graduate programs, please visit our website.

 

November 9, 2017

To Whom Do Children Belong?

This post also appears in the November 2017 issue of the American Journal of Bioethics. 

by John Lantos, Ph.D.

In this issue of AJOB, Navin and Wasserman (2017) argue that parents should have more discretion in clinical decision making than they currently do.…

October 27, 2017

BioethicsTV (October 16-27, 2017): Maternal-Fetal Conflict, Trolley Car Dilemma & Lying

by Craig Klugman, Ph.D.

The Good Doctor (Season 1; Episode 4): Maternal-Fetal Conflict

Although the focus of this show is supposedly the neuro-different resident, what it does very well is pose and debate ethical issues.…

October 6, 2017

BioethicsTV (October 2-6, 2017): Communication Issues and Assisting Suicide

by Craig Klugman, Ph.D.

The Good Doctor (Season 1; Episode 2); Communication (lying, stealing credit; keeping silent)

This week’s episode of this new drama was about communication, specifically on the topic of lying.…

August 3, 2017

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

May 8, 2017

BioethicsTV: Violating consent, living with difficult patient choices, and helping family choose

by Craig Klugman, Ph.D.

On Grey’s Anatomy (Season 13, Episode 22), two storylines looked at when a physician’s desire to do good should outweigh a patient’s choice.…

January 25, 2017

CPR and Ventricular Assist Devices: The Challenge of Prolonging Life Without Guaranteeing Health

by David Magnus and Danton Char

The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.

December 1, 2016

BioethicsTV (November 2016): Informed consent, HIV organ transplants, Forgiveness, Assisted Suicide, Treating Prisoners, Undue Influence in Consent, and Failure to Vaccinate

by Craig Klugman, Ph.D.

Grey’s Anatomy (Season 13, Episode 9). A building collapses when a landlord has failed to make necessary repairs a year after an earthquake.…

September 30, 2016

BioethicsTV: Community Research Consent and Competing for an Infant Heart

by Craig Klugman, Ph.D.

In the fall premiere of Code Black, military trauma surgeons are visiting the hospital on an annual pilgrimage to share what they have learned treating battlefield injuries.…

March 10, 2016

Toddler Death in Canada: What do we owe children?

by Craig Klugman, Ph.D.

In 2012 Alberta, Canada, 19-month-old Ezekiel Stephan died after allegedly being given supplements with an eye-dropper from the family’s own nutritional supplement company.…

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Published Articles (22)

American Journal of Bioethics: Volume 17 Issue 11 - Nov 2017

Reasons to Amplify the Role of Parental Permission in Pediatric Treatment Mark Christopher Navin & Jason Adam Wasserman

American Journal of Bioethics: Volume 17 Issue 11 - Nov 2017

To Whom Do Children Belong? John Lantos

AJOB Primary Research: Volume 8 Issue 3 - Sep 2017

A randomized study of a method for optimizing adolescent assent to biomedical research Robert D. Annett PhD, Janet L. Brody, David G. Scherer, Charles W. Turner, Jeanne Dalen & Hengameh Raissy

AJOB Primary Research: Volume 8 Issue 3 - Sep 2017

Moral conflict and competing duties in the initiation of a biomedical HIV prevention trial with minor adolescents Amelia S. Knopf , Amy Lewis Gilbert , Gregory D. Zimet, Bill G. Kapogiannis, Sybil G. Hosek, J. Dennis Fortenberry, Mary A. Ott & The Adolescent Medicine Trials Network for HIV/AIDS Interventions

American Journal of Bioethics: Volume 17 Issue 8 - Aug 2017

Saving or Creating: Which Are We Doing When We Resuscitate Extremely Preterm Infants? Travis N. Rieder

American Journal of Bioethics: Volume 17 Issue 8 - Aug 2017

What We Do When We Resuscitate Extremely Preterm Infants Jeremy R. Garrett, Brian S. Carter & John D. Lantos

AJOB Primary Research: Volume 8 Issue 1 - Feb 2017

Decision making in pediatric oncology: Views of parents and physicians in two European countries Domnita O. Badarau, Katharina Ruhe, Thomas Kühne, Eva De Clercq, Anca Colita, Bernice S. Elger & Tenzin Wangmo

AJOB Primary Research: Volume 8 Issue 1 - Feb 2017

Better to know than to imagine: Including children in their health care Tenzin Wangmo, Eva De Clercq, Katharina M. Ruhe, Maja Beck-Popovic, Johannes Rischewski, Regula Angst, Marc Ansari & Bernice S. Elger

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

A pilot study of neonatologists' decision-making roles in delivery room resuscitation counseling for periviable births Brownsyne Tucker Edmonds, Fatima McKenzie, Janet E. Panoch, Douglas B. White & Amber E. Barnato

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

Clarifying ethical responsibilities in pediatric biobanking Merle Spriggs & Craig L. Fry

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News (106)

July 5, 2017 10:00 am

For Parents of U.K. Infant, Trump’s Tweet Is Latest Twist in an Agonizing Journey (The New York Times)

The long journey for Connie Yates and Chris Gard, whose infant son, Charlie, cannot breathe or move on his own, appeared to have come to an end last week. The courts had ruled that the baby’s rare genetic condition was incurable and that the only humane option was to take him off life support. The couple announced that they were getting ready “to say the final goodbye.” Then Pope Francis and President Trump weighed in, offering statements of support and thrusting a global spotlight onto a heart-rending case that has become a cause célèbre in Britain.

June 14, 2017 9:00 am

Heaven over hospital: Dying girl, age 5, makes a choice (CNN)

Julianna Snow is dying of an incurable disease. She’s stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment. If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die. But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
January 20, 2017 9:00 am

How Science Is Helping Us Understand Gender (National Geographic)

A “neutral space” is a hard thing for a teenager to carve out: Biology has a habit of declaring itself eventually. Sometimes, though, biology can be put on hold for a while with puberty-blocking drugs that can buy time for gender-questioning children.

November 10, 2016 10:52 am

U.S. watchdog told Medicare, Medicaid that EpiPen was misclassified in 2009: senator (Reuters)

The internal watchdog at the U.S. Department of Health and Human Services warned the office tasked with administering federal health insurance programs that Mylan NV’s EpiPen was improperly classified as a generic drug in 2009, Senator Charles Grassley said on Tuesday.

November 3, 2016 8:00 am

More Children Are Being Poisoned By Prescription Opioids (NPR)

Young children and teenagers are increasingly likely to be poisoned by opioid painkillers that are often prescribed for other family members, a study finds.

October 7, 2016 8:00 am

This 8-year-old is free of cancer — for now — after a ‘breakthrough’ treatment (Washington Post)

By the time 8-year-old Ava Christianson got to the National Institutes of Health this summer, she had lost several grueling rounds to leukemia and was bracing for the next one.

July 13, 2016 8:05 am

Red Tape Leaves Some Low-Income Toddlers Without Health Insurance (NPR)

Many babies born to mothers who are covered by Medicaid are automatically eligible for that health insurance coverage during their first year of life. In a handful of states, the same is true for babies born to women covered by the Children’s Health Insurance Program.

June 22, 2016 8:18 am

Colorado's Teen Marijuana Usage Dips after Legalization (Scientific American)

Marijuana consumption by Colorado high school students has dipped slightly since the state first permitted recreational cannabis use by adults, a new survey showed on Monday, contrary to concerns that legalization would increase pot use by teens.

June 16, 2016 8:06 am

Hints that antibiotics, C-sections may affect baby gut bugs (Washington Post)

Two new studies are offering some of the clearest snapshots yet of how babies build up protective gut bacteria, adding to evidence that antibiotics and birth by C-section may disrupt that development.

June 8, 2016 8:53 am

This Is How Much Celebrities Get Paid To Endorse Soda And Unhealthy Food (NPR)

A new study published in the journal Pediatrics describes the lucrative endorsement deals of 65 music celebrities — including Britney Spears, Maroon 5, Timberlake and other stars popular with teens and young adults. These celebrities promoted 57 different food and beverage brands (see chart), ranging from soda to energy drinks to pizza, Pop Tarts and candy.

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