In April 2019, a 3-year-old boy, Noah McAdams, missed the third round of chemotherapy for his acute lymphoblastic leukemia. His parents wanted instead to focus on alternative remedies of cannabidiol oil, alkaline water, mushroom tea, and herbal extracts. The sheriff was summoned; Noah’s parents lost custody of their son, and a judge ruled that Noah must continue treatment despite his parents’ wishes.1
Thaddeus Mason Pope, JD, PhD
This case is not unique. Media headlines regularly report police actions and court proceedings involving parents who refuse cancer treatment for their children.2-4 Indeed, these cases are becoming more common as parents increasingly pursue alternative medicine or faith healing instead of conventional treatment.5,6 Therefore, oncologists must understand their legal responsibilities in these situations.
Children Generally Cannot Consent to Their Own Cancer Treatment
Cancer treatment for children almost always requires parental consent. Minor patients (those younger than age 18) are generally presumed incompetent, thus legally incapable of providing consent to their own medical treatment. Therefore, parents must make treatment decisions on their behalf.7
However, there are three exceptions to this general rule. First, “emancipated minors,” like adult patients, may make their own health-care decisions. Minors become emancipated by joining the military, getting married, obtaining a court order, or demonstrating the ability to live independently and to manage their own financial affairs.8 Second, even when unemancipated, some states permit “mature minors” to make their own health-care decisions if they demonstrate sufficient understanding and appreciation of the nature and consequences of treatment despite their chronologic age.9-11 Third, even when neither emancipated nor a mature minor, almost all states permit minors to consent to certain types of treatment concerning contraception, abortion, sexually transmitted infections, mental illness, and substance abuse. States are now debating whether to add vaccination.12
Parents Must Act in the Minor Patient’s Best Interest
Notwithstanding these exceptions and the value of minors participating in their own health care, parents usually remain the final decision-makers.7 Parents must act in the child’s best interest. This does not require that parents choose objectively “literally best” options for the patient. Instead, the best interest standard requires only that parents choose what they themselves “think” is best for the patient. Parents have a wide “zone of discretion.”13 They may make suboptimal decisions. They may even refuse potentially life-saving therapy when it is unlikely to be effective or when the side effects are overly burdensome.
Although wide, the zone of discretion is not unlimited. Parents may not refuse cancer treatment when (1) withholding treatment poses a significant risk of serious irreparable harm and (2) the projected benefits of the refused treatment outweigh the burdens.14,15
Here are two examples. The parents of 12-year-old Sarah Hershberger stopped chemotherapy for her T-cell lymphoblastic lymphoma. Because Sarah had an estimated 85% chance of eliminating her cancer with treatment, the court appointed a guardian to make medical decisions.16 Similarly, the parents of 17-year-old Cassandra Callender refused chemotherapy for her Hodgkin’s lymphoma. Because Cassandra had an estimated 85% chance of survival with treatment, the court authorized the state’s Department of Children and Families to make medical decisions.17 These two cases accord with dozens of others. Well-settled jurisprudence holds that parents may not refuse therapy of proven efficacy when refusal places the minor patient at significant risk of serious harm.
Refusing Effective Cancer Treatment Is Child Neglect
Parents refuse cancer treatment for four reasons: (1) they prefer complementary and alternative medicine; (2) they have faith-based reasons; (3) they are concerned about adverse effects; and (4) they lack insight into the patient’s treatment needs.18 Yet, no matter the reason, refusing effective cancer treatment is child neglect, unless the refusal is for religious reasons in some states.19,20
“The best interest standard requires only that parents choose what they themselves ‘think’ is best for the patient. Parents have a wide ‘zone of discretion.’”— Thaddeus Mason Pope, JD, PhD
Tweet this quote
Whatever the reason for refusal, the American Academy of Pediatrics advises that “clinicians have a legal and ethical responsibility to question and, if necessary, to contest” parental medical decisions that “put the patient at significant risk of serious harm.”7 Consistent with this recommendation, the largest study of its kind found that most oncologists reject parental refusals when treatment has a 33% or greater chance of success.21
Fortunately, most parent-clinician disagreements are short-lived. Clinicians can usually reach resolution by listening to the patient, listening to the parents, and offering good explanations for the recommended treatment.22 If necessary, clinicians can involve secondary consultants such as ethicists, psychologists, chaplains, or palliative care in the discussion. Multidisciplinary meetings often clarify misunderstandings and help everyone reach consensus.
Clinicians Must Report Suspected Child Neglect to State Authorities
However, when informal conflict resolution is not possible, clinicians must report suspected child neglect due to treatment refusal to state authorities. Oncologists have a duty to report these incidents when they have a “reasonable suspicion” or “reasonable cause to believe” that the information is reportable. Depending on the state and on the type of information, the report is typically made either to law enforcement or to a state agency. Failure to report can result in three types of sanctions: criminal penalties, civil penalties, and discipline from the clinician’s health licensing board.23
“Well-settled jurisprudence holds that parents may not refuse therapy of proven efficacy when refusal places the minor patient at significant risk of serious harm.”— Thaddeus Mason Pope, JD, PhD
Tweet this quote
Although underreporting often leads to sanctions, overreporting rarely does, because clinicians have legal immunity for making a good faith report. Even if they are mistaken, clinicians cannot be sanctioned for breaching confidentiality or for prompting an ultimately unnecessary investigation. Consequently, existing legal incentives lean heavily in one direction. They encourage clinicians to err on the side of caution and report parents who refuse medical treatment for their child.23 In short, if you are in doubt, if you are unsure whether an incident is reportable, then it probably is. ■
Dr. Pope is Director of the Health Law Institute and Professor of Law at the Mitchell Hamline School of Law in Saint Paul, Minnesota (www.thaddeuspope.com).
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.
DISCLOSURE: Dr. Pope reported no conflicts of interest.
REFERENCES
1. Marrero T: Against parents’ wishes, judge orders Tampa boy with leukemia to resume chemotherapy. Tampa Bay Times, May 8, 2019. Available at https://www.tampabay.com/news/publicsafety/against-parents-wishes-judge-rules-that-tampa-boy-with-leukemia-will-resume-chemotherapy-20190508. Accessed July 1, 2019.
2. Rains S: Parents charged for death of 3-year-old with 17 lb. tumor. The Lawton Constitution, January 11, 2019. Available from www.swoknews.com/local/parents-charged-death-3-year-old-17-lb-tumor. Accessed July 1, 2019.
3. KATU News Staff: Wilsonville’s Kylee, Christina Dixon found in Las Vegas. June 13, 2019. Available from https://katu.com/news/local/wilsonville-mother-daughter-found-in-las-vegas. Accessed July 1, 2019.
4. In re Glenn H, No. 1 CA-SA 17-0303 (Ariz App 2018).
5. Johnson SB, Park HS, Gross CP, et al: Complementary medicine, refusal of conventional cancer therapy, and survival among patients with curable cancers. JAMA Oncol 4:1375-1381, 2018.
6. Sanders SR: Religious healing exemptions and the jurisprudential gap between substantive due process and free exercise rights. UC Irvine Law Review 8:633-672, 2018.
7. Katz AL, Webb SA: Informed consent in decision-making in pediatric practice. Pediatrics 138:e20161485, 2016.
8. Veilleux DR: Medical practitioner’s liability for treatment given child without parent’s consent. American Law Reports 4th, 67:511, 2019.
9. In re Sheila W, 835 N.W.2d 148 (Wisc 2013).
10. In re EG, 549 N.E.2d 322 (Ill 1989).
11. Coleman DL, Rosoff PM: The legal authority of mature minors to consent to general medical treatment. Pediatrics 131:786-793, 2013.
12. Silverman RD, Opel DJ, Omer SB: Vaccination over parental objection—Should adolescents be allowed to consent to receiving vaccines? N Engl J Med. June 5, 2019 (early release online).
13. Pope TM: The best interest standard for health care decision making: Definition and defense. Am J Bioeth 18:36-38, 2018.
14. In re Hauser, No. JV-09-068 (Brown County Dist. Ct., Minn, May 14, 2009).
15. Sisk BA, Canavera K, Sharma A, et al: Ethical issues in the care of adolescent and young adult oncology patients. Pediatr Blood Cancer 66:e27608, 2019.
16. In re Guardianship of SH, 781 N.E.2d 971 (Ohio 2013).
17. In re Cassandra C, 112 A.3d 158 (Conn 2015).
18. Caruso Brown AE, Slutzky AR: Refusal of treatment of childhood cancer: A systematic review. Pediatrics 140:e20171951, 2017.
19. Sandstrom A: Most states allow religious exemptions from child abuse and neglect laws. Pew Research Center, August 12, 2016. Available at www.pewresearch.org/fact-tank/2016/08/12/most-states-allow-religious-exemptions-from-child-abuse-and-neglect-laws/. Accessed July 1, 2019.
20. Committee on Bioethics: Conflicts between religious or spiritual beliefs and pediatric care: Informed refusal, exemptions, and public funding. Pediatrics 132:962-965, 2013.
21. Nassin ML, Mueller EL, Ginder C, et al: Family refusal of chemotherapy for pediatric cancer patients: A national survey of oncologists. J Pediatr Hematol Oncol 37:351-355, 2015.
22. du Pré P, Brierley J: Challenges in managing parental expectations in paediatric care. Br J Haematol 183:15-22, 2018.
23. Pope TM: Legal briefing: Mandated reporters and compulsory reporting duties. J Clin Ethics 27:76-83, 2016.
