Parental permission and the commitment to quality care

Several months ago, Time.com reported on a case of a mother convicted of attempted murder, among other charges, for not administering chemotherapy to her then 7-year-old son, who was autistic, nonverbal, developmentally delayed and also diagnosed with non-Hodgkin’s lymphoma. The child died as a result of not receiving the chemotherapy prescribed. In court, the mother testified that she couldn’t watch him suffer from effects of toxic drugs, but was also remorseful and stated she wished she could have sought better avenues when caring for him all by herself.

Medical ethics and decision-making

Many of the ethical issues that arise in medicine have some component of decision-making involved. There are two main decision standards: substituted judgment and best interests. Substituted judgment is a judgment made on behalf of a non-competent patient based on what that person would have decided had he or she been competent. The best interest standard has its origins in family law and has become the prevailing standard used to judge the adequacy of medical decision-making on behalf of children.

Christine A. Zawistowski

In determining best interests, the surrogate decision-maker must determine the highest net balance among available options, weighing the positives against the negatives. The best interest standard incorporates the total well-being of the individual rather than just the medical well-being. The best interest standard can be difficult to apply because it can be difficult to define the best interest in the medical setting; values come into play and the nature of the various interests can be complex. For this reason, it is not entirely clear that “best interest” should be the sole consideration when making a medical decision on behalf of a child.

Consent and assent

Informed consent is a process that involves a competent individual voluntarily receiving and understanding information and then making a decision. Implied within this concept is that the individual involved has the ability to understand, communicate, reason and deliberate. It is assumed that the individual is also able to analyze conflicting elements and use personal values to come to a decision. The age at which a person possesses these characteristics varies from state to state and may be limited to specific medical conditions.

Children are legally presumed to be incompetent and are not allowed to provide their own consent for medical treatment. Technically, the parents cannot truly give consent for medical treatment on behalf of their children because informed consent is given by the person for whom the treatment is planned. Rather, parental permission is a more correct term to be applied to parents giving permission for medical treatment on behalf of their children. Parental permission implies shared decision-making between the parent and health care provider. Parents are granted wide discretion in these decisions as long as the intervention will not harm the child, will not significantly harm others and potential benefit from the intervention is possible. In cases involving the potential for substantial harm to the child, the focus shifts to what is best for the child.

Children should not be excluded from the process of obtaining permission for a medical treatment or intervention. The concept of assent (see Sidebar 1) was developed in the 1980s to address decision-making by adolescents with cancer. Children should participate in the decision-making process commensurate with their developmental levels. Their assent to medical care should be sought whenever reasonable, and parents and health care providers should not exclude them without persuasive reasons.

Refusal of care

Refusal of care can occur in all health care settings and at any stage of treatment. The refusal can come from the child, the parent or both parties, and there can be conflict between the two. Not all refusals of care are the same; there is variability in the degree of harm, likelihood of harm and role of the child.

Many times, refusals of care come about because of problems with communication.

If the situation remains unresolved despite best efforts (see Sidebar 2) an ethics consult should be obtained. After that, should the matter still be at a standstill, consider legal involvement. At what point the courts should become involved depends on the urgency and seriousness of the need for treatment. This option is best used as a last resort.

The mother’s refusal in the opening case was not explicitly stated and the health care team was not aware of what she was doing until it was too late. A decision-making tool (such as the one developed by Seattle Children’s Hospital) used at diagnosis and reviewed on subsequent visits, could have allowed the mother to voice her concerns and opened them up for conversation, possibly preventing this tragic event from occurring.

There may be instances in which parents can refuse treatment for their child. Clinicians who care for patients with life-threatening diagnoses must be knowledgeable of the decision-making process, consent, assent and avenues to take when parents refuse treatment.

Christine A. Zawistowski, MD, is a Pediatric Palliative Care and Intensive Care Doctor at the Cancer Institute of New Jersey and Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital, New Brunswick, N.J. Disclosure: Dr. Zawistowski reports no relevant financial disclosures.

For more information:

• AAP committee on bioethics. Pediatrics. 1995;95:314-317.
• Hord JD. J Clin Oncol. 2006;24:5454-5456.
• Rochman B. Is it murder if a mom withholds cancer treatment from her child? Time.com. April 14, 2011. Available at: www.healthland.time.com/2011/04/14/is-it-murder-if-a-parent-withholds-cancer-treatment-from-her-child.
• Seattle Children’s Hospital. Pediatric advanced care team. Available at: www.seattlechildrens.org/clinics-programs/palliative-care-consultation.