When is it okay to refuse your child something they want? What if it you refuse something that will save their life? Last year, Kirsten LaBrie, a single mother in Massachusetts stopped giving her son his home chemotherapy to treat his leukemia. Jeremy, who was severely autistic and developmentally delayed, died. With treatment, he had an 85-90% chance of survival. His mom was convicted of attempted murder and child endangerment. She said she couldn’t bear to see her son suffer the side effects of the drugs.[i]
There are other reasons why a parent may refuse treatment for their child, such as religious objections, but let’s focus on the issue of suffering. This case is deeply troubling, because while no good parent wants to see their child suffer, we also know that some suffering is inevitable. Parents do have a moral and legal responsibility to act in their child’s best interest, including providing needed medical care.
Ethical decision making for children is different than for adults. With children, their parents give permission—not consent—and the child, if he is able, gives assent. As the child matures, the locus of decision making gradually shifts from the parent to the child. When they reach 18 years, the legal age of majority, the parent can no longer control their child’s treatment, unless the child is mentally unable.
Parents’ wishes aren’t usually an issue, unless there is a conflict among the parents, their child, and the medical professionals. If the parents are requesting inappropriate treatment, the physician is morally free to decline. But, it gets more sticky if the parents refuse recommended treatment. If the doctor suspects medical neglect, she is required to report the situation to child protective services. This is a judgment call. Missing a follow-up appointment because the parent forgot or was overbooked is different than refusing to give chemotherapy. Dr. Robert Orr points out that families may have different value systems than doctors, and “protecting family integrity may be worth it in some circumstances.”[ii]
In the situation with the Massachusetts mom, we don’t know how mature her 9-year-old autistic son was, but it is likely he could not communicate either assent or refusal. We do know that his Mom’s refusal to administer the chemo cost him his life. Kristen LaBrie was not acting in her son’s best interests.
If health care professionals had found out sooner, they could have addressed the other issues, such as getting social services support for dealing with the autism, and pediatric palliative care for dealing with the leukemia. Pediatric palliative care is a relatively new, team-based approach that includes “all measures taken to lessen suffering at every stage of a child’s illness.”[iii] The team helps bring normalcy into the family’s life. We need to advocate for the expansion of pediatric palliative care to more hospitals and outpatient care centers.
No parent should have to carry the entire burden of a seriously sick child. If there had been a team of pediatric palliative care specialists, one boy with leukemia might be alive today.
Helping you understand tomorrow’s bioethical issues today, this is Paige Cunningham.
[i] “Jury Convicts Mom Who Withheld Cancer Meds,” Associated Press, April 12, 2011 http://www.msnbc.msn.com/id/42553209/ns/health-kids_and_parenting/ (accessed June 20, 2011).
[ii] Robert D. Orr, Medical Ethics and the Faith Factor: A Handbook for Clergy and Health-Care Professionals. (Grand Rapids: Eerdmans, 2009), 353. This book is part of the Critical Issues in Bioethics series from The Center for Bioethics & Human Dignity, and is a highly recommended resource.
[iii] Sonya Collins. “Pediatric Palliative Care: Easing Your Child’s Suffering.” WebMD, February 2, 2011 http://www.webmd.com/palliative-care/pediatric-palliative-care-pediatric-advanced-care (accessed August 10, 2012).