Healio
Healio
Issue: November 10, 2011
ByYoram Unguru, MD, MS, MA
November 10, 2011
5 min read
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Further defining the role of parents in the treatment of children with cancer

Issue: November 10, 2011
ByYoram Unguru, MD, MS, MA
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I read with great interest the commentary of Christine A. Zawistowski, MD, in the Sept. 25 issue of HemOnc Today regarding the ethics of pediatric and surrogate decision-making and refusal of care for a favorable prognosis cancer, an area in need of ongoing exploration. Dr. Zawistowski recounts the case of Jeremy Fraser, an autistic boy with non-Hodgkin’s lymphoma who died at age 9 years after his mother opted to abandon standard chemotherapy due to her fear that chemotherapy was making Jeremy sicker.

Best interest vs. harm

Cases such as this often raise questions regarding the limits of parental decision-making and, ultimately, a child’s best interests. As appreciated by Dr. Zawistowski, the best interest standard (BIS) has its origins in case law. The BIS is the ethical and judicial standard used to determine when state interference is justified. Although parents are granted wide latitude for decision-making, parental authority is not absolute, and when a parent’s decision is not in a child’s best interest, the doctrine of parens patriae allows the state to intervene and to act as a “surrogate parent” for those who cannot care for or protect themselves.

Although the BIS has become the moral foundation of clinical pediatric ethics, it has become the topic of much debate among pediatric bioethicists. In fact, as recognized by Dr. Zawistowski, the BIS is not always easily applicable in day-to-day clinical situations. At its core, the BIS is an important guiding principle. It strives to help parents and physicians make an ideal decision, but faced with having to make practical decisions, it is perhaps better placed to help make the most acceptable reasonable decision. For this reason, some prominent pediatric bioethicists feel it is an impossible standard to uphold.

If the BIS is limited as a decision-making tool, what alternative do caretakers have? One need only look as far as Dr. Zawistowski’s commentary, in which the word “harm” appears five times.

Yoram Unguru, MD, MS, MA
Yoram Unguru

The “harm principle” is a viable alternative to the BIS. It identifies when it is appropriate for the state to intervene and rephrases the question from one of promoting interests to preventing harms. Whereas the BIS seeks to determine which medical intervention is best for a given child (eg, giving chemotherapy to a boy with NHL), the harm principle functions to determine a threshold below which parents’ choices will not be tolerated (ie, by refusing chemotherapy, will the parents’ decision result in serious harm as compared to other options?)

I applaud Dr. Zawistowski for her discussion of parental permission and the related ethical principle of assent. An important historical correction is in order, however. Dr. Zawistowski states, “The concept of assent was developed in the 1980s to address decision-making by adolescents with cancer.” In fact, the notion of an assent requirement entered the research lexicon when it was articulated by the National Commission in its 1977 report for the Protection of Human Subjects of Biomedical and Behavioral Research. The assent requirement called for the need to recognize and respect the wishes of all children (not specifically adolescents with cancer) as they develop cognitively and mature. In articulating their discussion of assent, the commission relied upon a report by Lucy Rau Ferguson, a psychologist who had conducted work on assent.

I share many of Dr. Zawistowski’s thoughts regarding refusal of care by parents or minors. What makes the case of Jeremy Fraser different from others in which parents refuse recommended standard care for their children with cancer, is that Jeremy was autistic.

An expanded scope of care

In court, Jeremy’s mother gave three different explanations for her actions: She stated she was overwhelmed and depressed; she thought her son was cured; and she believed the chemotherapy was making him sicker. According to Jeremy’s aunt, his mother already was stressed having to care for a severely autistic boy, and the cancer treatments only added to her stress and depression.

This raises the important question of the level of help that was offered to Jeremy’s mother at home and should additional assistance have been offered. In other words, does the “system” have a responsibility, too, or are parents alone to be held responsible? Although Jeremy lacked an adult to protect him from harm and his mother clearly was to blame, is it possible a more robust system may have detected her misgivings sooner and prevented him from falling through the cracks?

Ultimately, as appreciated by Dr. Zawistowski, physicians inclined to involve the courts to override parental refusal to treat must be aware that the law views the BIS as promoting what will lead to the child’s overall well-being within the context of larger familial relationships. Historically, there has been a clear distinction between the courts’ willingness to support parents when the child in question is young and when the child is older (>14 years).

Although many courts are comfortable overturning parental objections to treatment for medical conditions in which the risk of harm is significant and imminent — and when the proposed treatment for the condition entails few side effects, as evidenced by several recent high-profile court cases involving minors with cancer — there is a clear trend among the courts and state legislatures, which are increasingly more tolerant of permitting refusal of efficacious treatment for minors with life-threatening illness, especially when the minor and parents are in agreement with one another.

Therefore, physicians should be aware of their own state’s statutes, as the threshold for overriding parental preferences varies by state.

Yoram Unguru, MD, MS, MA, is with the division of pediatric hematology/oncology, The Herman and Walter Samuelson Children’s Hospital at Sinai in Baltimore and the Johns Hopkins University, Berman Institute of Bioethics. Please direct all correspondence to: yunguru@lifebridgehealth.org. Disclosure: Dr. Unguru reports no relevant financial disclosures.

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