Monday, April 18, 2016

When adults shun modern medicine and a child pays the price

Hi. I'm Art Caplan from the Division of Medical Ethics at the New York University (NYU) Langone Medical Center.
Little Ezekiel Stephan is dead, and that is a tragedy. It's a tragedy for his parents and for his community. The little boy died of meningitis in a small town up in Manitoba, Canada. It should not have happened. It could have been prevented because the little boy could have been treated.
His parents chose, out of loving concern for him, to pursue alternative medicine. In this case, they knew the boy was sick. They fed him smoothies made out of maple syrup, horseradish, and other ingredients. They went to the natural foods store where the father worked and got some immune-boosting agent to give to him. They basically tried to do everything outside of mainstream medicine to help their son. They even had a friend, who was a nurse, come by, who said, "I'm not sure what's wrong with Ezekiel, but I think you should take him to the doctor, because it could be meningitis."
They didn't do it.
Why were they so afraid of mainstream medicine? What led to their opposition? I don't know. Appropriately, authorities in Canada have put the parents on trial. Now the parents are claiming that they are being persecuted for their beliefs in non–mainstream medicine. They even suggest that they are being persecuted because they did not vaccinate their little child against meningitis.
I don't think they're being persecuted. The trial is appropriate. But I don't think it's appropriate to punish these parents. They lost their son. They clearly loved their son. By their own lights, one could say they tried to do right by their son.
Something that every doctor needs to tell parents who might be interested in alternative treatment is, "If your family member stays sick for more than a few days and looks seriously ill, you must take that family member to a doctor, to a hospital. No issue and no argument about it. They have to go." Ezekiel was stiff from the meningitis. They could not get him into the car easily. When he finally went through respiratory arrest, he was in pain and suffering—he was obviously very ill.
Remember, all that is being required is a diagnosis. Then we can argue about whether there is a treatment, whether the treatment should be forced, or what should be done. Every parent should have a duty to take their child to the hospital no matter whether they are pursuing mainstream medicine, alternative medicine, or some cultural belief that does not recognize Western medicine. We might consider lobbying to pass laws that say, "When your child is very sick for more than a couple of days, you must bring them to the doctor."
That is what I would advise telling families. Pursue the philosophies you like—whether you want to pray, use horseradish smoothies, or whatever you are going to do. But if that does not work, and somebody is very sick for more than 36 hours—particularly a child—you'd better take that child or your family member to the hospital. One can believe what one wants, but when it comes to kids or family members who are too incapacitated to say what they would want, they must go to a physician. They must go to a hospital.


  1. In his final days of suffering from bacterial meningitis, 19-month-old Ezekiel Stephan had to be given fluids through an eyedropper and his body was stiff to the point of his back being arched, according to a physician's report newly released by an Alberta court to CBC News.

    The toddler was declared brain dead in March 2012 after an emergency trip to hospital to see a physician for the first time in his life, according to the document, which is included as an exhibit as the trial of his parents continues in Lethbridge.

    David and Collet Stephan stand accused of failing to provide the necessaries of life to their son...

    According to the report, Ezekiel's mother told the doctor the last time he appeared "completely well" was more than two weeks earlier, on Feb. 26, at the family's acreage in Cardston county, south of Lethbridge.

    On Feb. 27, Ezekiel "developed a fever and was whining a lot," the report reads...

    "As per the internet suggestions, they treated Ezekiel's breathing difficulty with cool air and a humidifier. They also started Ezekiel on some herbal/naturopathic remedies which they believe help fight off viral infections and have given Ezekiel in the past when he has a cold."

    Those remedies included olive leaf extract, garlic and methylsulfonylmethane, in addition to the "daily herbal/naturopathic supplements" that the parents had been giving Ezekiel, according to the physician's report.

    That daily regime included Omega 3-6-9, whey protein, FermPlus, an unnamed digestive enzyme, and Empowerplus — a controversial supplement sold by a company founded by Ezekiel's grandfather, Anthony Stephan...

    David Stephan told the court he is vice president of the company...

    Meanwhile, the child's symptoms, which his parents believed to be croup, continued for another week, although the physician noted "he never really had a cough."

    The boy had minimal appetite and little interest in drinking so Collet and David "used an eye dropper to make sure he was getting enough fluids," the report states.(continued)

  2. (continued)Aside from his first day of illness, Ezekiel's fever never returned, and his temperature never measured above 37.8 degrees, according to the report.

    He continued to be lethargic and have occasional bouts of difficult breathing, particularly at night, "but the parents felt he was gradually improving and responding to the cool air, humidifier, and extra herbal remedies."

    By March 5 Ezekiel appeared "much improved" and "well enough to go to a pre-school type program he attends," so Collet stopped the olive leaf extract, garlic and methylsulfonylmethane treatment, "as he seemed to have recovered from his 'croup.'"

    On March 6, however, Ezekiel was "unusually lethargic — more so than he had been during any of the days in the week prior."

    "He laid in bed the entire day and his only response would be to moan unhappily when Collet left the room," the physician's report reads.

    He again would not eat or drink and was restarted on his extra herbal remedies.

    "Collet also described noticing an unusual 'neurological symptom' that day where Ezekiel had repetitive movements of his right arm where he would pull at his diaper or rub his cheek and these movements seemed unusual and involuntary to Collet."

    He seemed "a bit better" the following day and the abnormal movements ceased, but his lethargy continued.

    From March 8-10, Ezekiel seemed to "gradually improve" but on March 11, the symptoms worsened again and his parents "noticed his body to be very stiff."

    By March 12, the stiffness was so severe that Ezekiel's "back was arched" and his parents called their family friend again, who came over to examine the boy with a stethoscope.

    "According to Collet, their friend concluded that Ezekiel's symptoms could be from meningitis," the physician's report reads.

    "Collet then looked up meningitis on the internet; specifically she mentioned looking at the WebMD website. She came across the Kernig and Brudzinski's test for meningismus and tried them on Ezekiel. She reports the tests were obviously positive, further indicating to her that Ezekiel was suffering from meningitis."(continued)

  3. (continued)Ezekiel's parents then resumed the treatment with olive leaf extract, garlic and methylsulfonylmethane and used the eye-dropper method to ensure he received enough fluids, as "he would not drink on his own," the report reads. They also started giving him Total Reload, an electrolyte and amino-acid supplement.

    Within two hours, "they felt he'd had some improvement and was less lethargic."

    "They called their naturopath in Lethbridge to ask for recommendations for treating viral meningitis and were advised to start him on something called BLAST," the report states...

    "Ezekiel seemed a bit more alert that morning but he was too stiff to be successfully placed in his car seat so his crib mattress was put in the back of the car and he laid on that for the drive," the report reads.

    "They picked up the BLAST and started Ezekiel on that and then drove back home."

    After a nap at home and more fluids, Ezekiel seemed more alert but still lethargic.

    After another nap, Ezekiel woke up about 8:30 p.m., when Collet noticed he had "abnormal breathing where he seemed to be gasping and struggling" to draw breath, followed by pauses in his breathing that lasted for a few seconds.

    "Collet patted him on the back when his breathing paused and then he resumed breathing but paused again shortly after," the physician's report states.

    "At that point the parents called 911 and Collet gave Ezekiel some rescue breaths. He coughed up a bit of mucous and again his breathing resumed. In discussion with 911 they decided to drive him to the hospital at that point rather than await an ambulance as his breathing had resumed.

    "They again placed him on the mattress in the back of the car and Collet stayed with him while David drove. Within minutes of departing, Ezekiel stopped breathing again. Collet again gave rescue breaths but this time Ezekiel did not resume breathing."

    Collett then gave him about five chest compressions, according to the physician's report, and his breathing resumed briefly but the frequent pauses continued.

    The couple called 911 again and stayed on speaker phone with the operator until an ambulance met their vehicle.

    "While on the phone with 911, the parents gave full CPR for about 10 minutes until EMS arrived," the report states.

    "Ezekiel had no spontaneous return of breathing and Collet reports he was blue by the time EMS arrived."

    The ambulance took Ezekiel to the emergency room at the hospital in Cardston where he was intubated and received about 30 minutes of CPR, multiple doses of epinephrine and atropine, and regained circulation...

    After arriving at the Alberta Children's Hospital, Ezekiel required "significant cardiopulmonary support," according to the physician's report, and "broad spectrum antibiotics."

    The working diagnosis was bacterial meningitis, although that was not confirmed by a lumbar-puncture test, as Ezekiel was "too unstable to undergo this procedure."

    He did not regain consciousness in hospital and, following a CT scan and a neurological assessment on the morning of March 15, 2012 the physician reported that Ezekiel was "completely unresponsive" and had "met criteria for brain death."

  4. “Hindsight is 20/20,” Stephan testified. “Looking back at it … had I known that this was going to take place, I would have been the first person to be advocating something else. Nobody would want an outcome like this as a parent.”...

    David and Collet Stephan, who own a nutritional supplement company, were charged with failing to provide the necessities of life after investigators learned they had not sought any medical treatment but instead attempted to treat his life-threatening illness with natural remedies — such as olive leaf extract, hot pepper and horseradish smoothies, water with maple syrup and juice with frozen berries...

    David Stephan, 32, testified that the couple believed Ezekiel had become ill with the flu after his symptoms worsened, and they gave him natural remedies to boost his immune system — but he admitted that neither he nor his wife have any medical training.

    “You’re working in the dark here,” said prosecutor Clayton Giles, who cross-examined him. “You were throwing things at something without understanding what you’re throwing those things at. I’m going to suggest, in fact, you felt you knew better than the medical establishment about how to deal with this issue. You are aware that doctors are out there?”

    Giles asked why Stephan told police and social workers after his son’s death that his wife had provided “constant care” and monitoring to the sick child if they believed he was getting better — as the father testified during defense questioning.

    A nurse friend previously testified that she told the Stephans the boy might have meningitis, a potentially fatal inflammation, and the prosecutor asked why the couple didn’t take the boy to be examined by a physician to rule out that serious condition.

    “You don’t trust conventional medicine very much do you?” Giles asked

    “Why would you say that?” Stephan said.

    Stephan testified that he became alarmed after his son died when several police officers came to the hospital, fearing they could lose custody of their eldest son, but doctors assured him that was standard for any investigation of a child’s death.

    “You know what my main concern was at that point?” Stephan said. “It was the idea that they might think we were negligent parents if they found out that we didn’t put Ezekiel in a car seat.”

    Witnesses testified that the toddler became so stiff from inflammation associated with meningitis that was unable sit in a car seat and was instead laid on a mattress in the back of the family’s vehicle on the way to the hospital.

    He argues that no evidence shows Ezekiel’s death could have been prevented if he had been given the vaccine for Haemophilus influenzae type b (Hib).

    Stephan even expressed doubts on the witness stand that his son actually died from meningitis — although it’s not clear what he believes killed the child.

    “I think it’s very likely he died of meningitis, but I’ve still got some questions around it,” Stephan testified. “I’ve heard many situations like that, but never once have I heard a situation like ours.”

  5. Unsurprisingly, most of those responding felt strongly that a seriously ill child must be seen and treated by mainstream medical professionals regardless of the parents' beliefs…

    A pathologist linked this kind of behavior with more commonly condemned forms of child abuse:

    Child abuse can be actions of commission or omission. An example of an action of commission is beating a child. An example of an action of omission is not seeking medical care when absolutely needed. This tragic case would be classified in the latter category (a fatal omission). Society has the moral obligation to protect children because children cannot protect themselves…

    A pediatrician advocated stronger legislation, asking, "Would it be reasonable as a society to amend the Constitution to state that children must not be denied life-saving care, regardless of the belief system of the parent?"

    But some professionals saw valid options when it came to serious childhood illness. One physician wrote, "How about we each live our own life and make our own decisions? Life is full of difficult decisions."

    An internist shot back. "This is a free country, and adults are certainly free to believe any sort of nonsense they wish, but they do not have the right to inflict their stupidity on their helpless children."

    A health administrator thought it was counterproductive to take a hard line against those who did not seek mainstream medicine:

    It is not a good idea to force people to take their loved ones to a hospital. These parents care the most about their child. If some people don't believe in medicine, we need to improve trust with medicine and the trustworthiness of those who practice it.

    But a pediatrician was not buying this line of reasoning:

    If you were talking about taking a dog or cat to a veterinarian, I would agree with you. But when you are saying parents have the right to eschew allopathic medicine due to a religious or philosophic concern, then you are condoning child abuse…

    The final word goes to a nurse practitioner who offered a unique view on the complexity of the issue:

    There have been times when I have encountered such parental opposition in the treatment of premature babies. What often happens is the neonatologist gets a court order to administer a treatment that the parents have declined, such as a blood transfusion. We have often found that parents cannot actually approve the transfusion but are okay as long as someone else takes the decision out of their hands. The parents aren't upset but are actually relieved when this approach is used. Their baby receives what is needed and they remain in good standing with their faith.

  6. A packed Lethbridge, Alta., courtroom erupted with emotion on Tuesday afternoon, after two parents accused of letting their son die from bacterial meningitis were found guilty.

    David Stephan, 32, and Collet Stephan, 36, were charged a year after their nearly 19-month-old son Ezekiel died in March 2012, under Section 215 of the Criminal Code which deals with "failing to provide the necessaries of life."

    There was a gasp in the courtroom as the decision from the four-man, eight-woman jury came down. People in the courtroom's gallery started to cry and Collet Stephan broke out sobbing uncontrollably while her husband and others rubbed her back.

    The Stephans will not be held in custody at this time, but will have to return to court on June 13 when the date for sentencing will be set.

    The maximum penalty for failing to provide the necessaries of life is five years in prison.

    Shannon Prithipaul, the past president of the Criminal Trial Lawyers Association, thinks it would be unlikely for the couple to receive "something close to the maximum."

    "It's not like they were not feeding their child or they were purposely withholding medication that they knew would assist the child but didn't," she said...

    Lisa Weich, the prosecutor, said this case was "incredibly sad."

    "What we hope that the public and the community takes away from this particular trial and the verdict in this trial is that all parents are held to a minimum standard of care that all children should expect at all times," she said.

  7. A Canadian couple who treated their 19-month-old son with herbal remedies to treat his bacterial meningitis, resulting in his death, have been sentenced to jail time and house arrest.

    David Stephan, 33, will serve four months in jail while his wife, Collet Stephan, 36, will serve three months of house arrest, CBC News reported.

    Before making his rulings, Justice Rodney Jerke noted that Collet did research and called a nurse about her son Ezekiel’s illness, while David just got more naturopathic remedies and called his father for advice. This demonstrated a lack of remorse for his actions, the judge said.

    "[David] loved his son but to this day refuses to accept his actions played any role in Ezekiel's death,” Jerke said.

    The Stephans’ three other children must see a medical doctor at least once a year and a public health nurse every three months, Jerke ruled.

    Ezekiel had been feeling ill for several weeks before he died, and his parents, who own a nutritional supplements company called Truehope Nutritional Support Inc., tried using water, maple syrup, juice with frozen berries and a mixture of apple cider vinegar, horseradish root, hot peppers, mashed onion, garlic and ginger root, CBC News reported. The boy’s parents didn’t call for medical assistance until he stopped breathing.