End-of-Life Decisions

Why the Dutch Keep Pediatric Euthanasia Illegal

Eduard Verhagen

Pediatric euthanasia in The Netherlands has a unique legal status - it is illegal, openly practiced, and well-regulated. The most surprising part isn't the law that enabled this — it's what happened after.

The Lost Aura of the Doctor in the Age of AI

Artificial intelligence can now make difficult diagnoses, detect drug interactions, read medical images, predict outcomes, counsel patients — and even write peer reviews. As these capabilities expand, doctors risk becoming supervisors

The Tiniest Patients: Rethinking How We Decide

When a baby is born at 22 or 23 weeks of pregnancy — half the normal gestational period — doctors and parents face one of the most agonizing decisions in all of medicine. Should they fight to keep the baby alive, knowing survival is u

Emilia Perez: New Life or New Gender?

The award-winning film Emilia Perez addresses a central question in gender medicine. When a patient wants to transition, is it because they want to change their gender or because they want to change their life? If the later, a gender trans

Survival After Court-Ordered Treatment Withdrawal

NR (as he is named in UK court documents) was born in 2020 with a malformed brain. He had, callosal agenesis, cortical dysgyria, dysplastic basal ganglia, a cleft lip and palate, and anopththalmia (no eyeballs). He was not expected to survi

Human sacrifice and the courage to fail

In their book, The Courage to Fail, Renee Fox and Judith Swazey describe the tension at the heart of research regulation. “Research physicians,” they write, “can mislead, exploit, or injure their subjects in the name of patient welfare, sci

Is the West the Best?

Neonatal intensive care units (NICUs) in different countries take different approaches to decisions about forgoing life sustaining treatment. These differences partly reflect decisions about resource allocation and the ways that babies’ liv

Parents prayers in the PICU

Two stories. In one, Trondheim, by Cormac James, a young man collapses at a bus stop. In another, A Small Good Thing, by Raymond Carver, a schoolboy is hit by a car. In both, the boys fall into a coma. In both, the parents hover

Who needs pediatric palliative care?

The central experience for families of dying children in the United States today is the experience of isolation. Childhood death has become so unusual that our communities have forgotten their rituals. The younger the child, the more

Tough Truths and Dissembling Discussions about Dying

Sigrid Nunez’ novel, What You Are Going Through, develops a new theme in the ongoing debate about the ethics of euthanasia and assisted suicide. Traditionally, that debate has focused on two parties – the person who is making the dec

Trashing genomics

Katherine Callahan, a neonatologist and bioethicist, offers a poignant warning about the dangers of new diagnostic genomic tests. She begins with a scene that will be familiar to most clinicians, a family conference. The room is crowded.

Another Autumn, Another COVID Jab. Or not?

In the United States, the CDC recommends the new COVID booster for everyone over the age of 6 months. In most of Europe, including Germany, France, Italy, and the UK, that same booster is only recommended for people over the age of 65 or f

Dying with dignity

Katie Englehart wrote a book trying to figure out what people mean by “death with dignity.” She proposes two very different ideas. One is that dignity is related to both autonomy and authenticity. “People find dignity in authenticity,”

How do you wanna die?

A few months ago, I had the opportunity to give a TED talk at Indiana University. I chose to talk about the many changes that have happened over the last fifty years in the ways that we think about death and dying, the ways that we care fo

Criticizing brain death pisses people off

The controversy about brain death really pisses some people off. Doctors, in particular, are likely to reject the idea that there is anything controversial about it at all. “Dead is dead,” they say, as if any idiot would know that life an

Controversial Bodies in the Mütter Museum

A few years ago, when a Kansas City museum was about to open one of those wildly popular exhibitions of carefully dissected and cleverly posed “plastinated bodies,” we published a book that examined the ethical issues surrounding the publi

The Death of a Good Doctor

I like to read books that explore the ways that doctors balance their idealism, their selfishness, and their need for emotional numbness. Some of the best of such books are by doctors like Anton Chekhov or William Carlos Williams or Samuel

When families disagree with experts

I wrote last week about the deliberations at an FDA Advisory Committee meeting about an innovative gene therapy treatment for Duchenne Muscular Dystrophy. I highlighted the disconnect between the comments made by parents and patients, who

Dobbs and Democracy in "Realville"

Roe v. Wade created a strange situation in American democracy. Politicians could posture against abortion without having to face the consequences of actually banning it. The contradictions of so-called pro-life positions were

Two old doctor books that won't die

From the time it was published, critics of Samuel Shem’s The House of God have been either predicting its death or trying to explain away its stubborn popularity. There are a hundred reasons why it should not be popular. It dealt with iss

Who (or what) is a bioethicist?

Quick, tell me: who, among the following people, is a bioethicist? Amy Guttman, Jodi Halpern, Pedro Almodovar, Renee Fox, Jodi Picoult, Maimonidies, Stanley Hauerwas? Correct answer: All of them. Or maybe none of them. All have co

High cost and low expectations

Beverly Gage writes about being a patient with a disease so rare that she might be the only person in the world who has it. After baffling a series of doctors, she is referred to the NIH. She has her genome sequenced and is diagnosed with

Hunger Games

Looking for some dark comedy? In the opening scene of The Whale, Charlie (Brendan Fraser) clutches his chest in pain while jerking off to homoerotic porn. He hears a knock on the door and beckons in a deceptively angelic looking missionary

Did COVID kill Jacinda Ardern?

Democratic governments that impose vaccine mandates are often wildly unpopular. Protests against vaccine mandates were strong in 19th century Germany and England. In New Zealand, they may have led to the resignation of Jacinda Ardern, eve

Paul Offit vs. NEJM on COVID Boosters

In a Perspective essay, Paul Offit writes, “We should stop trying to prevent all symptomatic infections in healthy, young people by boosting them with vaccines containing mRNA from strains that might disappear a few months later.” In an ac

Loving him meant letting him die

There is a complex episode near the end of Rob Delaney’s shockingly readable memoir, A Heart That Works, The book is about his son Henry who died of brain cancer at age two. It sheds new light on the emotional toll of caring for a dying ch

Florida’s Anti-Vax Policy

The Florida Department of Health recently recommended that COVID vaccine not be given to males between the ages of 18-39. They claimed that the vaccine was associated with increased mortality in this age group. Their analysis of vaccine ef

End of Life Care for Children in Groningen

Filmmaker Jean Luc-Godard’s obituary focused on his astounding creativity. It also noted that his death followed assisted suicide. His legal advisor called it a “voluntary departure.” In Switzerland, where he lived, assisted suicide is leg

Teach us to outgrow guidelines

In 1998, Norway, like many countries, adopted a national policy to guide decisions about life-sustaining treatment for extremely premature infants. That policy recommended against treatment for babies born before 23 weeks of gestational age

When to let babies die

When is a premature baby so premature that we should consider them non-viable? When we do not intubate them and provide intensive care. Instead, we inform the parents that nothing can be done and provide excellent palliative care to help t

Bombing bookstores and killing writers

“Some people get statues, others get holes.” – Salman RushdieDavid Foster Wallace tells a story about an atheist and a believer sitting at a bar in Alaska. The atheist explains why he doesn’t believe in God. “I was totally lost in a terrib

Money, miracles, and mortality in SMA

The child in the picture has spinal muscular atrophy (SMA). She made the news in Mumbai when her parents tried to one of the new and extraordinarily expensive treatments for her. This week's news was about two children who died from liver

Can race-based rationing be fair?

COVID-19 has been a good testing ground for theories about the fair allocation of scarce resources. Everybody agrees on the basic idea scarce life-saving resources should go to the people who are at highest risk of severe illness or death.

Voting for Trump Worse Than Smoking

Light smokers are 2-3 times more likely to get lung cancer, stomach cancer, and coronary artery disease than are people who don’t smoke. People who live in counties that voted most strongly for Trump are 3.3 times more likely to have died

Brain death and xenotransplantation research

OK, so researchers have genetically modified pigs and then transplanted their hearts into brain dead human bodies. Yesterday’s dystopian science fiction has become today’s human interest story. One of the most shocking things about these

Two key lessons from Uvalde

From the botched police response to the Uvalde school shooting, we should learn two key lessons about proposals to make schools safer. First, if this is how highly trained police officers respond to a shooting, imagine how much worse it wo

Miscarriages (of justice)

Bioethics was born as a result of debates about contraception and in vitro fertilization. The challenge was to explain why reproductive decisions belonged to individuals and not to the state. In the 1950s, research on oral contraception w

Surgery is the new sex

What, exactly, makes us human? Or inhuman? Those questions animate David Cronenberg’s disturbing new film, Crimes of the Future. The questions are not asked straightforwardly. Scene 1: A beautiful boy plays on the seashore. Behind him, a

How many deaths will it take till we know?

Experts estimate that a ban on abortion will lead to 140 deaths/year among pregnant women in the United States. Obstetricians will have to make tough decisions about whether to follow these laws and watch their patients die or violate the

CPR still better on TV

Nearly 30 years ago, we showed that CPR worked much better on TV than in real life. This was true both on the shows that focused on medicine as well as in dramas like E.T. and Star Trek that include medical subplots. On TV, most people su

Genome sequencing for all babies? We are not there yet!

For decades, leading scientists have predicted that soon, very soon, genome sequencing (GS) of all newborn babies will allow diagnosis and treatment of rare diseases. We are not there yet. I recently explained some of the problems in an

Redonda Vaught and the Stench of Corruption

A stench of corruption hangs over the whole debacle of the trial and sentencing of nurse Redonda Vaught. She was the designated scapegoat for a vast system of corruption. Vaught is Lt. William Calley in Vietnam, Dr. Anna Pou in the afterm

California U-Turn on Vaccine Mandates

The California legislature appears to have caved to pressure from opponents of a COVID vaccine mandate for schoolkids. I’d prefer to think of it as a wise and strategic retreat from a battle that mandate advocates could not win. Mandate a

Leonard Cohen and Samuel Alito

“There’s gonna be a meter on your bed that will disclose what everybody knows.” In Roe v. Wade, Justice Blackmun wrote, “The Constitution does not explicitly mention any right of privacy.” He notes, though, that, for at least a centu

Free RaDonda Vaught

RaDonda Vaught, a nurse, made a mistake. As a result of her mistake, a patient died. She promptly reported the error to the hospital’s safety committee. They investigated and ruled the death an accident. The local coroner agr

The Pope and Perinatal Palliative Care

We were excited to hear the Pope. (https://pubmed.ncbi.nlm.nih.gov/30097527/_ We followed the colorfully clad Swiss Guards through a maze of hallways, stairways and courtyards to ornate hall. The Pontiff's speech would wrap up the two-da

Saving premature babies and abortion rights.

Here's a question that may seem weird: Should we let premature babies die to preserve abortion rights? The New York Times thinks so. It reviewed an article showing improved survival rates for babies born at 22 weeks. (https://www.nej

Death and the neonate

Bryanna Moore

Dominic Wilkinson suggests that one of Schubert’s songs has relevance for neonatologists today. In the song, Schubert suggests that death sometimes comes as a friend. Wilkinson ponders whether the song has a message for doctors and…

Exploring the Role of Pediatric Neurology in Determinations of Futility, Identifying Vulnerability, and Participating in Shared Decision Making through Case-Based Analysis

Julio Quezada

Abstract It is not uncommon for pediatric neurologists to encounter ethical dilemmas in clinical practice. These dilemmas not only require an exploration of the basic bioethical principles, but also considering that neurological disease…

Chapter 10. Postmodern Death And Dying: A Literary Analysis

Martha Montello

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Shared Decision Making and End-of-Life Discussions in the PICU

Laura Miller‐Smith, Ásdís Finnsdóttir Wagner

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Intractable Disagreements About Futility in the PICU

Laura Miller‐Smith, Ásdís Finnsdóttir Wagner

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Intractable Disagreements About Futility

This paper discusses the inevitable ambiguity of the language that we use to describe events that are rare and emotionally devastating. A search for precision in such circumstances may distract from more important issues. Neither families…

When a Mother Changes Her Mind About a DNR.

Higginson J, et al.

Generally, wide latitude is granted to parents when making decisions for their child on the basis of the wide acceptance of the special relationship between parent and child and the important role played by parents in the lives of…

Palliative Sedation With Propofol for an Adolescent With a DNR Order.

Johnson LM, et al.

Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious.…

Cross-Cultural Differences in Communication About a Dying Child.

Cochran D, et al.

There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes…

Ethics Rounds: Death After Pediatric Dental Anesthesia: An Avoidable Tragedy?

Helen Lee, et al.

Early childhood caries (ECC) is the single most common chronic childhood disease. In the treatment of ECC, children are often given moderate sedation or general anesthesia. An estimated 100 000 to 250 000 pediatric dental sedations are…

Dying Children and the Kindness of Strangers

This chapter examines kindness to strangers as a modern way of death for terminally ill children, whereby the latter are moved out of their own community and into the strange world of the tertiary-care medical center. Drawing on fiction,…

Neonatal End-of-Life Care and Parental Grief

Jessica Brunkhorst, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The Continuing Complexity of End-of-Life Decisions

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Does diagnosis influence end-of-life decisions in the neonatal intensive care unit?

Jonathan P. Weiner, et al.

OBJECTIVE: To determine the influence of physiological status and diagnosis at the time of death on end-of-life care. STUDY DESIGN: Retrospective descriptive study in a regional referral level IV neonatal intensive care unit (NICU) of…

End of life, death and dying in neonatal intensive care units in Latin America

CA Fajardo, et al.

AIM: Most analyses of end of life decisions in Neonatal Intensive Care Units (NICUs) have come from Europe/English-speaking countries. Would decisions be different in Latin American NICUs? Therefore, we aim to evaluate the approach to…

A Saudi family making end-of-life decisions in the PICU.

Sayeed S, et al.

In this “Ethics Rounds,” physicians must decide how far to go in respecting the wishes of a Saudi Arabian man whose infant is dying in the PICU. The man requests an approach to end-of-life decisions that is deeply rooted in both Saudi…

Can we prevent sudden cardiac death in young athletes: the debate about preparticipation sports screening

Angira Patel

UNLABELLED: All high school athletes in the United States require a preparticipation screening examination. The American Heart Association recommends a focused history and physical examination. The European Society of Cardiology recommends…

Screening for Sudden Cardiac Death in the Young

Jonathan R. Kaltman, et al.

The debate over cardiovascular screening to prevent sudden cardiac death in the young (SCDY) has fervent and well-intentioned supporters on both sides.However, this debate will continue unresolved until additional,compelling evidence is…

Costs and End-of-Life Care in the NICU: Lessons for the MICU?

William Meadow

Neonatal intensive care units (NICUs) and medical intensive care units (MICUs) are both very expensive. The cost-effectiveness of NICUs has been extensively evaluated, as has the long-term outcomes of subpopulations of NICU patients. NICU…

Ethics rounds. Symbolic resuscitation, medical futility, and parental rights.

Frader J, Kodish E

What should doctors do when they are caring for a dying child with a complex, chronic condition and whose parents will not agree to palliative care? What if those parents are cognitively delayed and have lost legal custody of the child…

Care of the Dying Patient

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

To die, to sleep: US physicians' religious and other objections to physician-assisted suicide, terminal sedation, and withdrawal of life support.

Curlin FA, et al.

This study analyzes data from a national survey to estimate the proportion of physicians who currently object to physician-assisted suicide (PAS), terminal sedation (TS), and withdrawal of artificial life support (WLS), and to examine…

End-of-Life After Birth: Death and Dying in a Neonatal Intensive Care Unit

Jaideep Singh, William Meadow

OBJECTIVE: In canonical modern bioethics, withholding and withdrawing medical interventions for dying patients are considered morally equivalent. However, electing not to administer cardiopulmonary resuscitation (CPR) struck us as easily…

Thirty-something Ethics and epidemiology of ELBW death as neonatology approaches middle age

William Meadow, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Some are old, some are new: life and death in the ICU

William Meadow, et al.

We compared 560 adults hospitalized in our Medical Intensive Care Unit (MICU) to 245 ventilated babies hospitalized in our Neonatal ICU (NICU). Both ICUs had comparable mortality rates--roughly 1 patient in 5 died. The average length of…

The Karamazov complex: Dostoevsky and DNR orders.

Montello MM

Families making difficult end-of-life decisions in the intensive care unit often do not exercise their autonomy in accord with the individualistic philosophic and legal models that currently prevail. Instead, they try to avoid…

Hope and responsibility in clinical settings: two reflections on Jewish life and death. Are scientific truths the only truths?

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Responding to Intractable Terminal Suffering

Morton Leonard Yanow, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Stories of Caring and Connection Four Books on Death and Dying

Joshua Hauser, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Usefulness of Serial Algorithms of Illness Severity as a Proxy for Impending Death in the NICU: Not Much ♦ 157

Laura Frain, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Medical caretakers assessments of futility in the NICU: Does anybody really know what time it is? • 156

Yaya Ren, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Cardiopulmonary resuscitation on television. Miracles and misinformation.

Diem SJ, Tulsky JA

BACKGROUND: Responsible, shared decision making on the part of physicians and patients about the potential use of cardiopulmonary resuscitation (CPR) requires patients who are educated about the procedure's risks and benefits. Television…

OUTCOMES AFTER CPR ON TV. 284

et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

DISCUSSIONS ABOUT END OF LIFE (EOL) CARE AND PROGNOSTICATION IN THE NICU.• 231

et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The politics of medical futility.

Taylor RM

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Bethann's Death

Last summer, my sister-in-law Bethann died. She was thirty-nine years old. She had had cardiac arrhythmias for many years. Nobody knew why. Maybe congenital; maybe she'd had rheumatic fever as a child that had never been diagnosed. Growing…

Futility assessments and the doctor-patient relationship.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The illusion of futility in clinical practice

et al.

The claim that a treatment is futile is often used to justify a shift in the physician's ethical obligations to patients. In clinical situations in which non-futile treatments are available, the physician has an obligation to discuss…

Survival after Cardiopulmonary Resuscitation in Babies of Very Low Birth Weight

et al.

We conducted a retrospective study of outcome after cardiopulmonary resuscitation (CPR) in babies of very low birth weight. Of 158 such babies (birth weight, less than 1500 g) admitted to a neonatal intensive care unit in 1985, 49 (31…