Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The “child’s best interests” standard is used in challenging parents’ refusal to provide consent for a child’s medical care.
Who Gets to Decide What a Child’s “Best Interests” Are?
Medical professionals have a legal and ethical duty to advocate for the best interests of a child when parental decisions are potentially dangerous to the child’s health (especially when neglectful or abusive). Medical caretakers generally (should) challenge parental decisions when those decisions place the child at risk of serious harm. When a resolution cannot be reached through respectful discussion and ethics consultation, seeking involvement of a State child protection agency or a court order might be necessary.
Such was the case when the parents of Justina Pelletier refused to cooperate (without profanity-laced threats) with caretakers and state officials in determining appropriate care for their daughter. With the parents significantly impeding and ultimately sabotaging progress in determining appropriate care for Justina, Massachusetts was awarded permanent custody of the girl. This was after a judge claimed her original treatment, in the state of Connecticut, failed to get it’s child protection agency involved in getting her taken care of.
Justina’s symptoms, which included difficulty walking and eating, were considered symptoms of a rare mitochondrial disorder by professionals at Tufts Medical Center, but a differing opinion from Boston Children’s Hospital quickly indicated psychiatric causes. The parents rejected the latter diagnosis, and tempers flared as they tried to move their daughter back to Tufts. The Children’s team then notified the state that it suspected the parents of medical child abuse. From there, the case escalated, and the parents’ anger and refusal to make progress in the form of productive discussions resulted in their losing custody of their daughter.
The Jahi McMath case is very different. After the 13-year-old girl was declared brain dead in December after tonsil surgery, the family and hospital have fought over whether to remove the ventilator keeping her alive. In California — unlike in most other states — when a child dies due to medical negligence, an “artificial limit” is placed on the value of their life. The Medical Injury Compensation Reform Act — a law passed in 1975 — places a $250,000 cap on non-economic damages. Due to this law, if Jahi remains on a ventilator, the hospital could face a multimillion-dollar verdict for economic damages, with a jury deciding what it would cost to continue to care for her medical needs. However, if Jahi were to be taken off of the ventilator, the family may only recover $250,000, no matter how much a jury decides is a fair value to compensate them for the pain and suffering endured due to the loss of their child.
What is Medical Child Abuse?
In a nutshell, parents not helping the dialogue working toward the best interests of a child in their medical care, can result in lost custody and decision-making privileges. The state may step in when parents are disrespectful and unwilling to talk about the matter. The Massachusetts juvenile court, Judge Joseph Johnston, blasted Pelletier’s parents for being verbally abusive and complicating efforts to bring the family together.
Harvard Law professor Alan Dershowitz, who has offered to help the Pelletier family get their daughter back, recently stated, “Parents have a right to be wrong, as long as they’re acting reasonably. . . And if two distinguished medical centers have different diagnoses, it should be the parents, not the state, that determines the course of treatment.” Dershowitz also said he found it disturbing that the state would take custody of the child as a result of a dispute between two esteemed medical institutions.
