Wise Child
Kids today – what are they thinking?
According to researchers at St. Jude Children’s Research Hospital, kids come up with some pretty impressive and surprising ideas when faced with life and death decisions about their own cancer care.
Pamela Hinds (the head of nursing research at St. Jude) lead a recent study of terminally ill children. Describing the results to ABC News she said her team was “stunned” to find that children are not only up to the task of participating in end-of-life decisions, they’re also good at it.
This is in stark contrast to how it’s done in Texas. Consult with children? Not a chance. Consult with parents? Sure, as long as the parents completely surrender their right to have any say at all in their own child’s course of treatment. Otherwise, Texas parents should prepare to be treated like criminals.
Can kids participate?
Pamela Hinds’ St. Jude team recruited twenty patients who ranged in age from 10 to 20 (the average age of the group was 17). All of the young subjects had advanced stages of cancer, and all of them participated in three types of end-of-life decisions: initiation of terminal care, agreeing to a do-not-resuscitate order, or enrollment in a cancer drug trial.
Each of the subjects was interviewed one week after meeting with parents and doctors to decide on a course of action. Eighteen patients accurately recalled all of the treatment options available to them, and each of the patients in this group recognized that the decision they made would most likely result in their own death.
According to child developmental theories, children in this age group should be somewhat narcissistic about their personal desires. But the St. Jude research found that the children were primarily concerned for others. For instance, the ABC report notes that a patient named Samantha agreed to participate in a trial for a new drug because it might lead to a cure for someone else. Another patient – 17-year-old Jaleesa – also signed on for a drug trial. “I would want someone to do the same for me,” she said.
Ironically, it’s the prospect of death that seems to give these kids a positive perspective. St. Jude Chaplin Lisa Anderson told ABC that the young patients have “a very strong sense of finding meaning in this experience.”
Stacking the deck
Imagine how comforting the feeling of support must be when a child with a life-threatening disease participates with doctors and parents in making treatment decisions.
Now imagine just the opposite. Imagine what the negative health consequences might be if an adolescent cancer patient was given no say at all, forcibly removed from her home and family, and given a treatment she and her parents were adamantly opposed to.
That’s exactly what happened to 12-year-old cancer patient Katie Wernecke of Agua Dulce, Texas. (You can read the details about Katie’s case in the e-Alert “Heart of Texas” 10/17/05.) In October, Katie was finally returned to her parents after months of separation. The Wernecke’s immediately took their daughter to a Kansas clinic where she underwent intravenous vitamin C therapy.
Last month, the Texas Supreme Court dismissed the Wernecke’s request to absolve them from charges of medical neglect. Edward Wernecke responded with a powerful and angry statement posted on the Wernecke’s blog (prayforkatie.blogspot.com). Written as an open letter to all parents in Texas, it also serves as a sort of Amber Alert regarding Texas Child Protection Services (CPS).
Mr. Wernecke insists that the issue put before the Texas Supreme Court was not just an attempt to clear himself and his wife of medical neglect charges. The larger issue is “the right of fit parents to make the medical decisions for their children.” In chilling detail, Mr. Wernecke describes the broad powers of CPS – powers for which he says there is no oversight or accountability.
Mr. Wernecke writes: “We didn’t sign anything refusing treatment. The next thing we knew CPS was knocking on our door with two police officers to take our daughter Katie. There was no discussion, no hearing before a judge, nothing at all.”
“Just so wrong”
The Werneckes have accumulated more than $150,000 in legal expenses, most of it unpaid. “Here we are with a child with cancer,” he says, “and every dime should have went into caring for and finding a cure for that child’s cancer.”
Could it get any worse? It almost did, according to the Wernecke’s attorney. He told them that at one point CPS filed for complete termination of the Wernecke’s parental rights over Katie.
In addition to their daughter’s cancer care and mounting legal and medical bills, the Werneckes now have another concern. In the wake of the Texas Supreme Court decision refusing to clear them of medical neglect, Mr. Wernecke anticipates that he and his wife could be vulnerable to prosecution if Katie dies in their care. He writes: “This is just so wrong and just so unnecessary and just makes me sick to my stomach.”
I feel sick to my stomach too when I read the St. Jude study and think of how different this situation would be if Katie and her parents had been allowed to participate in treatment decisions right from the beginning.
An organization called Compassion Children’s Foundation has set up a special fund to help Katie’s family pay medical and legal expenses: compassionchildren.org.
Sources:
“End-of-Life Care Preferences of Pediatric Patients With Cancer” Journal of Clinical Oncology, Online publication ahead of print, 9/19/05, jco.org
“Children with Cancer Can Plan Own Treatment” Nils Kongshaug, ABC News, 11/20/05, abcnews.go.com
“Texas Supreme Court Fails to Do Their Job — Parents Unite With One Voice And Be Heard” Edward Wernecke, Pray for Katie blog, 11/19/05, prayforkatie.blogspot.com
