Two children (Kent and Brandon Schaible) have died of treatable pneumonia and dehydration because their parents (Herbert and Catherine Schaible) resorted to prayer instead of medical care.  In another particularly egregious case, members of the Faith Assembly Church denied medical care to a 4-year-old with an eye tumor the size of the child’s head.  Law enforcement officials found blood trails along the walls of the girl’s home where she, nearly blind, used the walls to support her head while navigating from room to room.  Seth Asser and Rita Swan have documented 172 cases of child deaths from preventable medical complication between 1975-1995.  The report does not include seventy-eight faith healing deaths reported in Oregon from 1955-1998, or the twelve deaths in Idaho from 1980-1998.  As recently as 2013, five child deaths in Idaho were reported from families whose religious beliefs prevented them from seeking medical treatment.  What sort of religious beliefs might possess a parent to refuse medical treatment for their child?  

Christian Scientists base their refusal on the religious belief that medicine is fundamentally mistaken in thinking the ultimate cause of disease is biological, seeing the real source of disease as spiritual disorder; and a spiritual problem calls for a spiritual solution.  The reality of sickness is not denied (e.g., you really do have pneumonia), however, the ultimate cause of that pneumonia is a result of spiritual disorder that can only be properly cured by spiritual interventions.  Because medicine is preoccupied with the biological level, it is unable to bring about change at the spiritual level where real healing occurs.  Sometimes specific scriptures will be cited and interpreted as encouraging the practice of faith-healing (e.g., Epistle of James 5:14-15, Mark 16:18){Campbell, 2010 #836}.  Believers see an obligation to act as an exemplary witness in the presence of illness by appealing to prayer, anointing, and vigils alone for healing.  Some scriptures are even interpreted as seeing recourse to medicine as an act of rebellion against God (2 Chronicles 16:12, Luke 8:43-48).  Others make more straightforward empirical claims by arguing that faith healing is simply more effective than modern medicine by citing the high number of annual iatrogenic deaths in hospitals (200,000-225,000 by some estimates).

Currently, most states offer legal shield from child abuse and neglect statutes for parents who refuse medical treatment for children on religious grounds (see: https://www.pewresearch.org/fact-tank/2016/08/12/most-states-allow-religious-exemptions-from-child-abuse-and-neglect-laws/).  Prior to 1974, it was considered child abuse to fail to seek medical care for a child on religious grounds.  However, a national movement was sparked by the Christian Science Church to have religious exemptions to child abuse and neglect statutes after a member of the church was convicted of manslaughter for failing to seek medical care for their child.  These efforts succeeded in 1974 with the passage of the Child Abuse Prevention and Treatment Act.  Several revisions have subsequently been made to the act, which now defers to states to decide whether to include religious exemptions to child abuse statutes. 

These legal exemptions ought to be overturned and secular clinical ethicists ought to continue recommending the override of religiously motivated medical refusals for children.  A growing consensus in clinical ethics cites the harm principle as the proper justification for overriding these refusals in pediatrics.  However, debate continues over how to interpret the harm principle in such cases.  Aside from locating a proper physical threshold of harm (some suffering, significant suffering, permanent disability, death), ethicists have also considered whether non-physical forms of harm ought to be taken into consideration.  For example, does a parent refusing requested puberty-blocking therapy for a trans-adolescent cross a psychological or dignitary harm threshold that should also trigger state action?  These are the sorts of questions that continue to engender lively debate in clinical ethics. 

by Keisha Ray, Ph.D.

Like others in our WebMd culture I often go to the internet to research my symptoms, looking for possible solutions.…

Children are not small adults. This is a phrase we say in pediatrics on a regular basis. The reason for such an absurd comment is that we are constantly faced with medical decisions that force us to rely on adult data to inform our practice. Pediatric patients face unique diseases and metabolize medications differently from adults. Their ability to recover from injury is often superior to their adult counterparts and thus the Quality Adjusted Life Years can be substantially different.  I argue that we have an ethical imperative to conduct pediatric research because 1. research brings forth generalizable knowledge for the good of the pediatric population and 2. because research guides clinical practice and the physician has a duty to provide the best possible care to the patient.

Research in human subjects is justifiable if it satisfies the following conditions: 1. A goal of valuable knowledge, 2. A reasonable prospect that the research will generate the knowledge that is sought, 3. The necessity of using human subjects, 4. Favorable balance of potential benefits over risk of the subjects, 5. Fair selection of subjects and 6. Measures to protect privacy and confidentiality. This list does not suggest any condition that could not be applied to pediatric research subjects as they all promote fairness, beneficence and non-maleficence. Typically, we do not consider clinical research as something that provides significant benefit to the individual subject. Generally, a clinical trial is initiated with equipoise on the efficacy for if not met with equipoise, there would be no need for the study as the outcome would already be known. Thus, if a clinical trial were to test the efficacy of a given medication, the human subject could benefit from being in the trial if the medication works OR could suffer from side effects and receive no benefit from participation. So, although there is potential for individual benefit after participating in the study, the main purpose is to benefit future patients and add to the general knowledge of the topic. A utilitarian approach would look at the potential consequences of pediatric research and determine it to be right or wrong based upon the balance of good or bad. Pediatric research must go through the same pathways as adult research with all human subjects’ trials needing to have a careful justification that the benefits outweigh the risks. Utilitarian theory is focused on value and thus the best action is the one who promotes the most good for all involved. This is precisely the goal of research. Research is conducted to affect change and improve care across a larger population. Through clinical practice, a physician may help hundreds to thousands of patients over the course of a career. However, through research, that same physician could affect the lives of thousands to millions of patients over the course of her life and far beyond. Therefore, in a carefully planned and executed pediatric clinical trial where the potential benefits outweigh the risks, the outcomes could be exponentially beneficial to the pediatric population, thus supported by a Utilitarian approach.

The physician takes an oath to promote the patient’s best interest and to avoid harm. Currently, the majority of treatments we provide to pediatric patients are not evidenced based because no clinical trials have been conducted to test that hypothesis. Therefore, each day we care for pediatric patients without evidence of treatment safety nor effectiveness, we are potentially causing harm. Pediatric researchers support a Kantian theory where morality is judged by their motives. Thus, if a researcher wants to conduct a clinical trial only for the fame from discovering the essential element and not because of a desire to promote good, this would not be a moral-worthy endeavor. Therefore, if we examine the physician’s obligation to her pediatric patient, a duty-based ethical theory would tell us to treat each of them with the best possible practice available. Research guides our clinical practice and help to ensure that we are minimizing harms and maximizing benefits. If we support a Kantian approach, in order to satisfy our obligations, we must utilize the available data to make the best possible decisions, and thus, the available data must come from clinical trials on pediatric patients to ensure scientific rigor.

One objection to pediatric research is that these patients are considered a vulnerable population, incapable of independent informed consent and at risk of exploitation. Due to this fear, special protections have been placed on pediatric research leaving an even more limited pool of subjects in which to study. This is justified by some stating that we should proceed with caution and only permit research when the potential for benefit is extremely likely. However, if the criteria are too narrowed, we risk excluding potential participants from research and unjustly diffusing the risks to a non-uniform population. Rights Theorists would protect the pediatric patient against oppression, unequal treatment, etc. Therefore, upholding the decision to conduct pediatric research allows for the rights of all patients to be upheld and for providers to contribute to the overall body of science, thus practice safer and more effective medicine to the benefit of all patients. When we practice medicine on children without data, we are unnecessarily exposing them to the same risks we fear and are doing so without the oversight and protection imbedded in clinical trials.

In conclusion, I support that pediatric research is both essential and ethical as it 1. generates a generalizable body of knowledge to the benefit of the pediatric patient of the future and 2. clinical practice is best guided by empirical data conducted through research. Clinical ethics outlines our responsibilities as physicians to our patients including veracity, privacy, confidentiality, and fidelity while upholding our role as a clinician. In contrast, research ethics contributes to the greater good by promoting generalizable knowledge for all future patients.

by Craig Klugman, Ph.D.

The Good Doctor (Season 3; Episode 8): Dying alone; Chicago Med (Season 5; Episode 9): Bizarre DNRs, Consent is a process

The Good Doctor (Season 3; Episode 8): Dying alone

A world-famous leukemia oncologist lands in the hospital with occlusion to her coronary arteries and a damaged left side of her heart.…

by John Lantos, MD

Dr. William L. Meadow, MD, PhD, died at the age of 70 on Saturday, September 14, after battling leukemia for four years.  …

by Craig Klugman, Ph.D.

In the 2019 BBC/HBO fictional near-future mini-series Years and Years, people deemed by a totalitarian U.K.…

by Craig Klugman, Ph.D.

After age 40, the risk of developing a cataract increases. By 75 years of age in the U.S.,half of whites, 53 percent of blacks and 61 percent of Latinx develop cataracts.…

by Leah McClimans, Ph.D.

The Autism CARES (Collaboration, Accountability, Research, Education and Support) Act is currently up for reauthorization before Congress.…

by Craig Klugman, Ph.D.

A controversy last week erupted out of freshman New York Congressperson Alexandria Ocasio-Cortez’s Instagram Live appearance and follow-up tweet saying that the facilities where the federal government is keeping detained children are “concentration camps.”

The Border Patrol Chief immediately called Ocasio-Cortez’s use of the term, “offensive”.…

by Florence Ashley B.C.L., LL.B

Hormonal interventions for trans youth are subject to controversy in the media and certain clinical circles.…