Adults have the right, both morally and legally, to make decisions about their medical care.
What about kids?
Until they become adults, or are close to becoming adults, their parents or legal guardians have the right to make those decisions for them.
Challenging Parental Medical Decisions
There are situations in which a parent’s rights to make medical decisions for their kids can be contested. In general, you can’t make decisions that will obviously harm or put your child at extra risk.
“In most countries, parents have a legal right to make treatment decisions on behalf of their young children. Such rights are normally rebuttable: they can be set aside by courts where parents’ decisions pose a significant risk to the life or well-being of the child.”
Tim Dare on Parental rights and medical decisions
For example, if a parent continues to refuse antibiotic therapy and hospitalization for a life-threatening infection, like meningitis, then the child’s doctor will likely contact child protection services and get authorization to treat the child anyway.
What if you refuse a meningitis vaccine? Although a bad idea that puts your child at risk to get a vaccine-preventable disease, unless your child is in the middle of an epidemic, it is very unlikely that anyone would call child protective services on you. In the situations in which courts have gotten involved in getting kids vaccinated and protected, it was because an unvaccinated child was in foster care for another reason, two parents disagreed about vaccines, or rarely, there was an epidemic and the parents refused to either get vaccinated or stay in quarantine.
“The American Academy of Pediatrics (AAP) believes that all children deserve effective medical treatment that is likely to prevent substantial harm or suffering or death.”
AAP on Religious Objections to Medical Care
Why do these cases come up, cases which certain folks call medical kidnapping?
“Parents are free to become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”
Prince v. Massachusetts
It may be that the parents:
- refused treatment because of religious objections
- thought that the risks and side effects of the treatment were worse than their child having the disease
- want to pursue alternative treatments for cancer or other life-threatening conditions, instead of chemotherapy and other standard therapies, especially in situations in which standard therapy has a good chance of success
- don’t believe the diagnosis is real and are pursuing other treatments that are harming the child
- want to continue treatments that doctors think have become futile
- have lost custody of their kids for reasons that have nothing to do with the child’s medical issues and so a legal guardian, which might be the state, is making those decisions now
Fortunately, these situations are not very common, no matter how much some folks try to scare parents that the state is coming to kidnap kids away and force them to get vaccinated or get other treatments. Yes, courts do sometimes have to step in and do what they think is right for a child over a parent’s wishes, but there is no epidemic of doctors or child protective services kidnapping kids.
The New Medical Kidnapping Panic
Although you can sometimes challenge the decisions a parent makes when their kids are sick, and in some cases, ultimately treat their kids in ways that those parents might not agree with, again, you can’t simply take or kidnap a child and do whatever you like.
“Physicians have both a moral obligation and a legal responsibility to question and, if necessary, to contest both the surrogate’s and the patient’s medical decisions if they put the patient at significant risk of serious harm.”
AAP on Informed Consent in Decision-Making in Pediatric Practice
Except in emergencies, overriding a parent’s wishes is usually a long process, involving second opinions, an ethics panel or team, child protective services, and the courts. In most cases, a judge, sometimes after several appeals, decides what will ultimately be done, looking at all of the evidence from both sides.
That the process takes time is evident when you look at the timeline from the legal battle for Alfie Evans. Although most people likely think everything began when the tragic story finally made headlines, a few weeks before his death, it was at least four months earlier that the hospital began “liaising directly with the family after disagreements over his treatment.” And it was four months before that, when Alfie was 13-months-old, that the hospital had first started talking about withdrawing life-support treatment.
It took a hearing before judge in the family division of the high court, three court of appeal judges, a review by supreme court justices, and a review by the judges at the European court of human rights for Alder Hey Children’s hospital to withdraw Alfie’s life-support treatment.
That the process took so much time was missed by those who push the idea of medical kidnapping. These same folks, in the case of Alfie Evans, are also pushing claims of vaccine injury, a plot to illegally harvest organs, a plot to cover up a misdiagnosis and medical neglect by the hospital, a plot to kill him with a lethal injection, and that others had a plan to help him get better.
Many of the same issues were raised in the case of Charlie Gard, an infant who was taken off life support at another UK hospital against his parent’s wishes.
Other cases have included:
- parents (or older teens) who stopped or wanted to stop chemotherapy and instead try laetrile, shark cartilage, mud wraps, hydrogen peroxide injections, or whatever the latest fad alternative treatment happen to be to treat their kids cancer – Sarah Hershberger, Daniel Hauser, Cassandra Callender, Abraham Cherrix, Makayla Sault, Katie Wernecke, Jacob Stieler, Chad Green, Joseph Hofbauer, Tyrell Dueck, Tamar Stitt
- parents who refuse medications for other conditions – Ariana Godboldo,
- parents who are treating their children with unnecessary medications (medical child abuse) or are giving them harmful substances, like Miracle Mineral Solution (bleach)
- other parents who didn’t want to stop life support – Sun Hudson, Isaiah Haastrup, Jahi McMath, Steffen Rivenburg Jr., Areen Chakrabarti
What about when doctors disagree on a diagnosis and plan of care? Can parents simply pick which one they prefer?
In most cases you can.
Doctors have different styles and there are often different treatment plans for the same condition. The trouble typically comes when a parent chooses an alternative type treatment that has been shown to not work or is known to be harmful. Or provides treatments a child doesn’t even need.
Tragically, we often don’t hear about these cases until it is too late and the child dies before doctors and courts ever have a chance to intervene. When folks talk about medical kidnapping, they don’t seem to mention kids like:
- Ezekiel Stephan – died at 19-months because his parents treated his bacterial meningitis with natural remedies, including “water with maple syrup, juice with frozen berries and finally a mixture of apple cider vinegar, horseradish root, hot peppers, mashed onion, garlic and ginger root”
- Madeline Kara Neumann – the 11-year-old who died because her parents relied on prayer instead of modern medicine to treat her diabetes
- Ryan Lovett – the 7-year-old who died with a Strep skin infection that his mother had been treating with “holistic remedies,” allowing it to progress to pneumonia, meningitis, and multiple organ failure
- Louise Le Moaligou – an 11-month-old who died because her parents treated her pneumonia with “cabbage and clay compressions”
- Gloria Thomas – died at 9-months because her parents pursued homeopathic remedies for her severe eczema, even as she developed malnutrition and sepsis.
- Isabella Denley – a 13-month-old with severe seizures who died after her parents opted for alternative treatments over anti-convulsant medications, including a “vibrational kinesiologist, a cranial osteopath and a psychic who told them Isabella was suffering from a past-life trauma.”
- Cameron Ayres – a 6-month-old who died with a likely inherited metabolic disorder that was treated by a homeopath with vinegar and honey
- Eliza Jane Scovill – died of AIDS-related pneumonia at age 3-years. Eliza Jane was the daughter of Christine Maggiore, an HIV denialist who advised HIV positive moms to not take preventive antiviral drugs during their pregnancy, the one thing that would have kept Eliza Jane from getting HIV in the first place.
- Alex Radita – the 15-year-old with diabetes who died because his parents wouldn’t treat him with insulin
- Aidan Fenton – the 6-year-old with diabetes who died after undergoing slapping therapy by a Chinese healer, therapy that also involved fasting for “days on end.”
- Garnett Spears – a 5-year-old who supposedly had multiple medical problems, but instead was poisoned by his mother, who was adding a lot of extra salt to his g-tube feeding bags
- Gypsy Rose Blanchard – after a lifetime of being told she was “sick,” including having leukemia, muscular dystrophy, and seizures, Gypsy and her boyfriend stabbed her mother to death
- the 6-week-old in South Texas with late onset vitamin K dependent bleeding who never received vitamin K prophylaxis at birth and died after developing brain bleeding and seizures
- the 3-week-old in Indiana with late onset vitamin K dependent bleeding who was born in a birthing center and whose “parents signed a waiver to forego vaccination and prophylactic therapies,” and required an emergency craniotomy to evacuate braining bleeding, prolonged intubation, and difficult to control seizures
- Tom, Roger, and Chrissy Williamson – the three children were taken to over 500 doctor appointments, put on medications for epilepsy, Crohn’s disease, Tourette’s syndrome, etc, and had unnecessary surgeries because their mother made doctors think they were sick
- Amina Krouser – a 14-year-old who died after a neglected sore throat led to a life-threatening brain infection, for which her mother refused emergency surgery.
- Christopher Bowen – an 8-year-old who had 13 major surgeries and 323 visits to the hospital because his mother fooled doctors into thinking he had a rare genetic disorder
- the Oregon mother who’s three kids had unnecessary surgeries and were put on high dose “cocktails” of medicine, including one that she was trying to put in hospice
Trouble can also come when a child gets diagnosed or re-diagnosed with a more controversial condition. That seems to be what happened with Justina Pelletier, a teen who was kept and treated at Boston Children’s Hospital against her parent’s wishes. The doctors there doubted her original diagnosis, that she had a mitochondrial disorder.
“Unfortunately, mitochondrial genetic disorders can be difficult to diagnose, and many affected people may never receive a specific diagnosis. They are often suspected in people who have a condition that effects multiple, unrelated systems of the body.”
NIH on Mitochondrial genetic disorders
Similar to mito disorders, there are other conditions that are often difficult to diagnose, including Ehlers-Danlos, Postural Orthostatic Tachycardia Syndrome (POTS), and Pediatric Autoimmune Neuro-Psychiatric Disorder Associated with Streptococcus (PANDAS).
Getting diagnosed or treated with these conditions wouldn’t usually be an issue, except that some alternative, holistic, and integrative health care providers take advantage of them. They might even stretch the disease definitions to make them fit almost anyone with vague symptoms and use treatments that many others would consider harmful, or at least unnecessary. It isn’t hard to see that even when a child gets a genuine diagnosis for one of these conditions, it might get questioned because they might have seen others that turned out to be misdiagnosed.
To be clear, these are all very real conditions that are almost certainly under-diagnosed because many doctors still don’t understand them. If you suspect that your child has one of these conditions, or any other rare condition, try and seek out a true expert to confirm the diagnosis. Does everyone who comes to the clinic get a diagnosis and list of supplements to buy? Then that likely isn’t the “expert” you want your kid to see.
Did you know that many of the DAN (Defeat Autism Now) doctors that once pushed biomed treatments to “cure” autism are now some of the same doctors continuing to push autism biomed treatments, but are now also diagnosing and treating kids with mito disorders.
And remember when all of those kids in LeRoy, New York developed tics for no good reason? One doctor, who actually runs a PANDAS institute, diagnosed many in the cluster with PANDAS.
It shouldn’t be surprising that many of these DAN doctors, including many who are not actually medical doctors, are also in the PANDAS Physicians Network Practitioner Directory.
Are they all cutting edge doctors helping to diagnose and cure kids when no one else can? Or as in the case of their autism biomed treatments, are they taking advantage of people looking for hope wherever they can?
Complicating matters further, some providers also diagnose kids with conditions like adrenal fatigue and chronic Lyme disease that most doctors don’t even think exist!
“Government should not get involved when doctors disagree about a diagnosis or course of treatment, the doctors have full knowledge of the child’s medical record, and a parent chooses one doctor’s opinion over another’s.”
Maxine Eichner on The New Child Abuse Panic
Government should not have to get involved when doctors disagree, but quack doctors shouldn’t be out there taking advantage of people either, especially to the point that it is going to harm a child. When they do, someone needs to step in and protect those kids.
And when you hear a story about a “medical kidnapping,” remember that you typically just get one side of the story. Because of privacy laws, the doctor, hospital, and CPS likely isn’t going to release any details that will help you understand why they felt the child was at risk.
Even more importantly, when folks tell you that medical child abuse isn’t real and doesn’t happen, tell them about about the victims named above.
What to Know About Challenging Parental Medical Decisions
Challenging and taking away a parent’s right to make medical decisions for their child is something that is typically only done in extreme situations.
More on Challenging Parental Medical Decisions
- AAP – Autonomy, Beneficence, and the Rights of Parents and Children: Exploring the Application of Ethical Principles in Pediatrics
- AAP – Religious objections to medical care.
- AAP – Informed Consent in Decision-Making in Pediatric Practice
- AAP – Minors as Decision-Makers
- When Doctors Accuse Parents of Medical Child Abuse
- Prince v. Massachusetts
- The case of Alfie Evans: what does Catholic tradition say?
- When Seeking Treatment For A Child Crosses the Line: How to Recognize Medical Child Abuse (Part One)
- When Seeking Treatment For A Child Crosses the Line: Medical Child Abuse Vs. Rare Diseases (Part Two)
- Medical Child Abuse: Beyond Munchausen Syndrome by Proxy
- The Intersection of Medical Child Abuse and Medical Complexity
- Parental Decision Making
- Parental rights and medical decisions
- Limiting Parents’ Rights in Medical Decision Making
- When parents and physicians disagree: What is the ethical pathway?
- When healing turns into killing: religious and philosophical exemptions from parental accountability
- Treatment decisions regarding infants, children and adolescents
- Overriding parents’ medical decisions for their children: a systematic review of normative literature
- ‘Call from God’: American pro-lifer’s role in Alfie Evans battle
- Alfie Evans’ parents needed help. The vultures came instead
- Father: Girl in ’05 custody fight has cancer again
- Quackery and “wellness”: The case of David and Collet Stephan and their son Ezekiel
- When there’s no real alternative
- Horrifying suffering caused by treating pertussis “naturally”
- Christine Maggiore and Eliza Jane Scovill: Living and dying with HIV/AIDS denialism
- Mitochondrial genetic disorders
- PANDAS/PANS treatments, awareness evolve, but some experts skeptical
- Index to “Fad” Diagnoses
- Deaths and complications due to treating the fake disease known as “chronic Lyme disease”
- Fake Diagnosis Fatigue
- Naturopathy vs. Science: Fake Diseases
- Stanislaw Burzynski and Robert O. Young: How two quacks of a feather illustrate how poorly states regulate medical practice
- In Goop Health: An even quackier quackfest of dangerous misinformation than expected
- In GOOP Health: Wellness Panem style
- Alas poor Craniosacral. A SCAM of infinite jest, of most excellent fancy.
- Ayurvedic medicines may be poisoning you. Literally.
- Florida revokes medical license of “Lyme literate” doctor
- America’s quack, dissected yet again
- Here we go again: The vile tactic of blaming shaken baby syndrome on vaccines
- How Pseudoscientific Quacks Defend Child Abuse
- Using the lie that shaken baby syndrome is a misdiagnosis for vaccine injury to try to exonerate another accused child abuser
- Book – Do You Believe in Magic?
Thanks for writing this Vince — it will be very helpful.
If there are quack doctors (who have been licensed by the state) out there that the public should be protected from, then doctors and hospitals should be filing complaints against them and states should be removing their licenses. IF THEY ARE LICENSED BY THE STATE, THEN PARENTS SHOULD BE ABLE TO TRUST IN THE MEDICAL SERVICES THEY PROVIDE. Using the Pelletier case for an example, doctors charging child abuse claimed her gastric tube was unnecessary, but failed to file complaints against the hospital and doctor who performed those supposedly unnecessary and abusive procedures, yet accused the parents who have no power to perform surgical procedures of abusing the child because the procedure was performed. Parents of children who truly have one of those hard-to-diagnose or controversial illnesses have to worry that there are “child abuse experts” out there like Dr. Alice Newton who contributed to two false convictions of child abuse and also the medical kidnapping of a child, Justina, who was ultimately returned to the supposed “abusers” — which seems to demonstrate that courts ultimately found that they were not, in fact, abusers. Medical Child Abuse experts define abuse as “parent sees herself as an advocate for the child” or “the child behaves differently when the parent is in the room” or “the patient dwells on his sickness” — in other words, complete bullshit — normal human attitudes and behavior. If you complain about your illness, then you are “dwelling’ on it, and if your mother insists that doctors take another look, or gets a second opinion, then she’s a medical child abuser. None of these charges are in any way scientific in nature, or can be considered objective proof, and yet these medical child abuse quacks are allowed to use their “opinions” in a court of law as evidence, resulting in traumatised children and falsely accused or imprisoned adults. These quacks are “diagnosing” child abuse in order to avoid having to actually prove their child abuse claims in a court of law. It makes a mockery of our justice system, and makes it impossible for parents to trust medical care providers. Recently, a dentist sent a letter to a parent threatening to report her to CPS because she had not scheduled a follow up appointment. Is that saving children from child abuse, or is that extortion? Yes, there are truly abusive and crazy parents, and the way to deal with that is to collect the evidence, charge them with criminal child abuse, and then put them in jail or remand them to psychiatric care. This “medical kidnapping” system is designed to circumvent the justice system, and give doctors the power of the getapo. Courts defer to the medical experts, state appointed guardians defer to the medical experts. Once the parent is removed, doctors can proceed without answering to anyone, even using the child for research as that is allowed on foster kids. The only hope that a child can have for a true advocate is a family member. That is why we need to laws to ensure that if a child is taken from ONE parent, that custody will revert to the nearest available and willing adult kin, or at least the medical proxy will revert to kin. Even if one parent is a “medical child abuser”, other family members can still represent the child’s best interests in a medical decisions.
A medical treatment decision is more than just a medical choice. Some people choose not to take chemo in order to trade quantity for quality of life. Some people prefer the joint replacement for increased mobility, and some people will accept limitations on mobility in order to keep their own body parts. Should a person who has chronic pain use medications, knowing they are only palliative and can have financial and health costs? Maybe, maybe not. These are not medical choices, they are personal choices. The child or her family needs to make such choices. Doctors only provide part of the puzzle, but it must be incoporated into a much larger framework. The medical kidnapping issue has highlighted a societal problem that medical decisions are legally viewed as being soley the purview of doctors. That is terribly wrong. Medical treatment choices are decisions of informed consent. The patient or patient’s guardian is informed, and then considers that information in the context of their lifestyle and beliefs. A child tennis champion may take more risks for mobility, and a child who has no need for extraordinary athletic ability, may choose the lower risk option. There is more to a medical treatment decision than just medicine.