The answer may well be “no” if the hospital has a futility policy and the medical team decides that treatment would be medically futile. Even more frightening, unless your state has a law requiring that hospitals disclose their futility policy, medical professionals may make the decision not to treat without consultation with parents based on their own judgment about how “futile” treatment would be. (Across Canada, “physicians are not obligated to provide futile treatment, but may be required by law to provide life-sustaining care until the patient is transferred” according to the Journal of Oncology Practice.)
After their own experience of being told their daughter Abigail would die shortly after birth due to having a "futile" medical condition, Rex and Dawn Allison and their oldest daughter, Hannah, spent almost two years talking with families and medical professionals about how kids with severe genetic conditions are routinely labeled as having lethal conditions. In many cases they are allowed to die by withholding nutrition and/or medical treatments. (Abigail Allison has a genetic syndrome, is now 10 years old, and is exceeding her prognosis.)
After reviewing the medical and bio-ethical literature, the Allisons logged over 20,000 miles, talking with parents and interviewing doctors from six major medical centers to discuss the medical literature and understand how these children were being treated in neo-natal intensive care units and hospitals. In addition, they interviewed historians and theologians on this important topic.
The fruit of all this work is the scripturally based and carefully researched film, Labeled. According to its promotional literature:
Labeled exposes the shocking reality of how parents of some children diagnosed with genetic disorders are tragically being told their child’s condition is lethal and incompatible with life. Once labeled, children may have life sustaining food and medical care withheld or withdrawn, without the consent or knowledge of their parents.
For me, the most shocking part of the film came when one couple could described how their child had been refused further treatment in the hospital’s neo-natal intensive care unit. They bundled up this very sick child and drove across town to another hospital where the child received needed treatment. Their child is doing well years later.
One can understand why futility policies may be necessary for adults. When a patient has exhausted treatment options for cancer, it may be in the patient’s best interest to cease medical interventions and move to palliative care. The likely outcome in such a situation may be quite clear. But outcomes are far less clear for children with genetic conditions or severe medical needs.
On the first day of her life, our own daughter experienced two collapsed lungs and a severe brain hemorrhage. A medical team might have refused treatment, concluding that further treatment was medically futile. Praise God that did not happen. She has lived joyfully with her disabilities for the past 26 years. This past week I had the privilege of being the keynote speaker at her school’s commencement ceremony.
Decisions of medical futility can be made not only on the basis of predicted viability but also on quality of life. Poor predicted quality of life is often listed as the reason given by doctors wanting to withhold treatment. But who can predict or decide what the quality of life will be as a baby grows? For example, nearly all children with the serious genetic disorders, trisomy 13 and trisomy 18, smile.
One speaker in Labeled brilliantly articulates the prevailing cultural attitude that children are a "lifestyle accessory." If children are seen as a lifestyle accessory, then medical personnel will be more likely to refuse treatment for children who are not “perfect.” Though the word “eugenics” has fallen into disfavor, it is still practiced today in a variety of forms. In North America, children born to parents of Northern European descent are much more likely to live than children born to parents of color. An estimated 70 percent of all children with Down Syndrome are aborted. Children labeled as medically futile can be refused further treatment by their medical team.
Christians helped change culture of infanticide/abortion prevalent among Romans and Greeks in New Testament times. We need to continue to fight for life in our culture that seeks to terminate children that are not considered a fit “lifestyle accessory.” The film, Labeled, can help us understand how that battle needs to be fought on yet another front.
For more information see the film’s website which includes the trailer: www.labeledthemovie.com.
Disability Concerns has a copy of Labeled to lend out. Contact us if you would like to borrow it for a showing.