Last week, the parents of cancer-stricken 5-year-old Ashya King took their son from a Southampton Hospital without doctor consent. Ashya’s parents intended to take their son to Portugal, where they hoped he would receive proton beam therapy for his brain cancer—a type of radiation that more accurately targets tumors.
Ashya’s doctors, however, feared that his life would be endangered were he to leave the hospital, as he was using a feeding tube, and they had already dismissed proton beam therapy as a viable treatment. The Kings, who had ordered special food and had taken special precautions for the journey, felt that they were doing the best thing for their son.
When Ashya’s parents took him from the hospital without his formal discharge, authorities declared the child “missing” and put out a warrant for the Kings’ arrest. The situation snowballed into an international manhunt that ultimately led police to a hotel room near Málaga where the family was posting YouTube videos to explain their side of the story. The Kings spent three nights in jail, but they were eventually released and the warrant for their arrest was withdrawn. As of writing, they are continuing to pursue the possibility of getting proton beam treatment for Ashya in Portugal.
If this had unfolded in the U.S. rather than in Europe, it probably would have gotten just as messy. The process for removing a child from a situation perceived as dangerous depends on a number of factors, including which state and even which county in which the child is located. When the situation comes under scrutiny at a hospital—because neglect or dismissal of medical treatment is suspected—it can get even more complicated. We don’t have a nation-wide protocol on what hospitals can and should do when it comes to “medical neglect,” even though a 2011 study from the Children’s Bureau and the U.S. Department of Health and Human Services found that close to 2 percent of reported cases of child maltreatment were classified this way.
Under a definition used in seven states (Mississippi, North Dakota, Ohio, Oklahoma, Tennessee, Texas, and West Virginia), and often applied in others, “medical neglect” is “failing to provide any special medical treatment or mental health care needed by the child.” Some states (Indiana, Kansas, Minnesota, and Montana) define medical neglect more specifically: “the withholding of medical treatment or nutrition from disabled infants with life-threatening conditions.” Some states, however, are more specific in defining what is not neglect: In 31 states and the District of Columbia, civil child abuse reporting laws include an exception to exempt parents “who choose not to seek medical care for their children due to religious beliefs.”
Needless to say, definitions are frequently vague and are easily contradicted or enforced subjectively. Essentially, hospital staff determine whether or not a child’s life is threatened by the parents’ decision to leave the hospital without formal discharge. Staff are mandated by law to call local child protective services and to report what happened when a child leaves without being discharged, but the response from local child protective services can vary. Since an investigation cannot take place if the parents and child are on the run, typically, a warrant can be issued for the parent’s arrest—as happened in the case of the King parents. Law enforcement gets involved in order to track down the parents, while child protective services gear up for an investigation, usually involving a physician familiar with medical neglect and other experts on child abuse. Dr. Allison Jackson, of Children’s National in Washington, D.C., explained that the investigation usually involves a “multidisciplinary team.” She said that often parents suspected of abuse or neglect are found innocent and are dismissed. Those stories never make headlines, though.
The subjectivity built into the laws and their enforcement has resulted in some very sad and confusing cases in recent years. Last year, for instance, a 14-year-old girl from Connecticut who was receiving ongoing treatment for a mitochondrial disorder at Tufts Medical Center confronted these fuzzy laws. Reportedly, the girl was taken by ambulance to Children’s Hospital in Boston with her mother after suffering a number of gastrointestinal symptoms. When, following a pronouncement from several doctors at Children’s that the girl’s condition was not mitochondrial—as it had been diagnosed and treated for years—but psychiatric, her parents tried to take her to Tufts. The hospital intervened, filing a child medical abuse report, and she was taken into state custody. (It’s worth noting that child medical abuse differs from medical neglect in that it refers to the administration of unnecessary medical treatments, rather than the dismissal of necessary medical treatments. The classification, however, still serves to remove a child from the custody of the parents.) At Children’s, the girl was forcefully moved to a psychiatric ward. For months, she was kept at the hospital, with limited visitation from her parents, while the hospital staff insisted the only way she could leave was if she went into foster care, specifically a group home selected by the hospital. After 16 months and a tortuous legal battle, the girl was finally allowed to return home to her family and into their custody.
Such stand-offs between parents and hospitals are inevitably intertwined with financial issues, too. In 2012, a woman and her fiancé unhooked their three-month-old daughter from monitors at an Allentown, Pennsylvania hospital because they felt that the baby, who has Downs Syndrome and heart defects, would receive better care elsewhere. The couple couldn’t get permission to have her transferred to another hospital because their insurance wouldn’t cover it, even when they insisted they would pay for her care out of pocket. The couple was charged with disorderly conduct and endangering the welfare of their child when they removed her from the hospital against doctor’s orders. (It is not clear from the reporting whether or not an official “medical neglect” charge was brought).
In most cases like this, it is almost impossible to determine what is “right” or even “best.” The only clear thing may be the lack of clarity that these unfortunate situations involve.