Was it Ethically Justified to Remove Justina from her Parent’s Care and ignore the Desired Medical Treatment for their Daughter?
How would you feel if your 14-year-old child was taken from you by the state because it believed you were guilty of “medical child abuse,” a term used when parents or other caregivers are suspected of seeking unnecessary or even harmful treatments? That’s what happened to the parents of Justina Pelletier in February 2013 after physicians at Children’s Hospital in Boston surmised that a serious medical problem diagnosed earlier by a doctor at Tufts University was inaccurate and Justina’s problems were primarily psychiatric in nature. When the parents sought to discharge Justina, the hospital filed medical child abuse charges, which were ultimately supported by the Department of Children and Families and later a juvenile court judge. Thirteen months have gone by since then during which time Christina’s parents have been restricted access to their daughter. The family’s visitation “rights” have been reduced to two 20-minute phone calls and a one hour-long supervised visit per week.
The background issues are as follows. Justina’s parents have long insisted that their daughter suffers from mitochondrial disorder, a group of genetic ailments that affect how cells produce energy, often causing problems with the gut, brain, and muscles. Justina’s physicians at Tufts had been treating her for this illness for about a year, saying she exhibited many of its symptoms though they were still in the midst of determining whether she had a clear-cut case of this disorder.
Then in February 2013, Justina was brought to Children’s Hospital after suffering severe intestinal issues, and having trouble walking. In a matter of a few days, doctors there concluded that her problems were primarily psychiatric, and that her parents were ignoring the root cause of her problems and pushing for unnecessary medical interventions. Her diagnosis was somatoform disorder – a psychiatric disorder that causes sufferers to feel pain, although there is no physical cause. When the parents sought to discharge Justina, the hospital filed medical child abuse charges, which were ultimately supported by the state and later a juvenile court judge.
This is a complex case but one issue cannot be ignored from an ethical perspective. Does the state have an ethical right to remove a minor child from the care and custody of her parents when they disagree with the parent’s chosen form of treatment for the medical problem? If the answer is ‘yes,’ then you and I could lose custody of our child if one doctor diagnosis the problem one way – which we agree with – while another dismisses that diagnosis and starts to treat our child for a completely different ailment. Where would it stop?
It seems to me Children’s Hospital has acted in total disregard for the parent’s parental rights by using the Commonwealth of Massachusetts’s Care and Protection Law to decide what’s best for Justina. The fact that a judge agreed with the diagnosis made by Children’s Hospital and not the doctor who initially treated her at Tufts, and awarded custody of Justina to the Massachusetts Department of Children and Families (DCF), doesn’t make it the right decision. The decision reflects a commonly misunderstood notion of ethics that if an act violates the law it is unethical. The term for this is ethical legalism.”
An act is not an unethical act solely because a law has been violated. The law itself may not be ethical because it violates the rights of another party. Justina’s parents, in consultation with their chosen medical professionals and not those of Children’s Hospital, have a right to decide on medical treatment short of obvious mental or physical abuse, which is not an issue in this case. Treating a child for a disease you believe she has and not the one diagnosed by another medical facility does not rise to the level of abuse. The Massachusetts law may be useful in certain cases of medical child abuse, such as when parents on their own and without proper medical counseling force their child to take certain drugs that are harmful to the child, but not when differences of opinions exist on the proper medical course of action
About one month ago, Christina was moved to a residential facility in Framingham, Massachusetts and not permitted to go home to Connecticut with her parents. Children’s Hospital, while still monitoring her medical care, has said in a statement that it has been pleased with the girl’s progress in and out of the hospital. Justina’s parents, however, contend that her condition has worsened in the past year, and she can now move around only in a wheelchair.
Massachusetts child protection officials are actively working to return the now 15-year-old Justina to her home state of Connecticut, a spokesman for the state Department of Children and Families said last Friday in the agency’s first public comment on the case. The spokesman also told the Boston Globe that Tufts Medical Center, the parents’ first-choice hospital to care for the girl, will be overseeing her medical care.
“Our primary goal has always been the health and well-being of Justina. We want the parents to be able to work with the providers and courts to ultimately move Justina back to her home state of Connecticut. That is the objective, and is consistent with our previous efforts to find an appropriate placement near her home,” said agency spokesman Alec Loftus. Loftus said a medical team has been identified at Tufts to oversee the girl’s care, a move that the parents have long sought.
The timetable for returning Justina to her home state has not been set, and it is unclear just how much the Massachusetts Department of Children and Families is retreating from the girl’s case. But Loftus said child-protection officials from both states, the juvenile judge handling the case, and lawyers for the parents are actively working on identifying a new placement in Connecticut. The next court date before the judge is March 17.
It appears that the new-found-openness now exhibited by authorities result from the national attention given to this case by commentators such as Glenn Beck and Megyn Kelly. It doesn’t hurt that the nonprofit organization The Liberty Counsel has come to the aid of Justina’s parents.
Justina’s case illustrates the lack of fair-mindedness and compassion of a child protective organization that has overstepped its moral authority. As with so many issues in life, we should examine the ethics of a decision by using The Golden Rule. Would those who made the decision to remove Justina from her parents care want the same decision to be made in a similar situation if they were the affected parents? In my opinion the decision makers in this case did not treat Justina and her family the way they would want to be treated.
Blog posted by Steven Mintz, aka Ethics Sage, on March 3, 2014