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Minors' Rights in Medical Decision Making

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JONA’S Healthcare Law, Ethics, and Regulation / Volume 9, Number 3 / Copyright B 2007 Wolters Kluwer Health | Lippincott Williams & Wilkins Minors’ Rights in Medical Decision Making Kathryn Hickey, BA, RN ABSTRACT In the past, minors were not considered legally capable of making medical decisions and were viewed as incompetent because of their age. The authority to consent or refuse treatment for a minor remained with a parent or guardian. This parental authority was derived from the constitutional right to privacy regarding family matters, common law rule, and a general presumption that parents or guardians will act in the best interest of their incompetent child. However, over the years, the courts have gradually recognized that children younger than 18 years who show maturity and competence deserve a voice in determining their course of medical treatment. This article will explore the rights and interests of minors, parents, and the state in medical decision making and will address implications for nursing administrators and leaders. ................................................................................................................................................................ hen and how does state’s interest in protecting life the years by state lawmakers a minor show ma- supersede either a minor’s or and medical professionals. Issues Wturity and the abil- their parents’ wishes? These are that have been disputed are ity to make a meaningful, well- questions that have created nu- parental rights and responsi- informed decision regarding merous ethical dilemmas and bility, minors’ rights, and the treatment? At what age does legal conundrums. Nursing ad- vulnerability and competence of a child or adolescent have the ministrators who may be in the the minor.1 This dispute has led cognitive ability and the emo- midst of the conflict must be tional maturity to fully un- well aware of the rights and . Author Affiliations: Shriners Hospitals for . derstand the consequences of interests of all parties involved. Children-Chicago, Chicago, Illinois. Corresponding author: Kathryn Hickey, BA, . choosing or refusing medical This controversy has been the . RN, Shriners Hospitals for Children-Chicago, . 2211 N Oak Park Ave, Chicago, IL 60707 treatment? And when does the subject of much debate over . ([email protected]). 100 JONA’S Healthcare Law, Ethics, and Regulation / Volume 9, Number 3 / July–September 2007 Copyright @ Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. to vast differences in the ways that states address are protected by the constitutional right to privacy. In these issues. some jurisdictions, the right to informed consent arises To determine the competence of a minor, courts look from the law of battery in that the patient has a right to at age, experience, degree of maturity, judgment skills, be free from unconsented touching of their person. the demeanor of the minor, evidence of separateness Informed consent presumes respect for patient auton- from parents, and the particular facts in the case.2 Many omy and the provision of full and accurate information to times, the competent minor’s wishes regarding medical a patient to enhance decision making. These mandates treatment incidentally coincide with that of the parent apply to both the acceptance and the refusal of treat- and protect the state interests. Matters become much ment. Informed consent must include the following: more complicated when they disagree.3 Nursing administrators, who may be called upon to intervene, 1. an understandable explanation of the condition, may need to seek legal counsel to sort out the variety of the recommended treatment, the risks and benefits of interests involved in these circumstances. the proposed treatment, and any alternatives; 2. an assessment of the person’s understanding of ............................................................................ the information provided; Maturity/Competence of Minors 3. an assessment of the competence of the minor or surrogate to make medical decisions; and As children grow from infancy to young adulthood, 4. assurance that the patient or surrogate has the ability to parents and guardians gradually relinquish responsi- choose freely between alternatives without coercion.5 bility and decision making to them, while remaining as a safety net for them. This is true for medical decision Minors can and should participate in medical decision making as well. It is clear that young children lack the making commensurate with their developmental level experience, judgment, and cognitive ability to be self- and ability. However, the concept of informed consent governing in all matters. States and courts have, with has only limited application in pediatric care. Only some exceptions, never allowed children younger than competent minors with legal empowerment have the 12 years to make medical decisions for themselves and ability to give true informed consent to medical 1 exercise self-determination. For infants and young treatment. In other situations, a parent or guardian children, decisions regarding medical treatment have acting as a surrogate provides informed ‘‘permission’’ been in the hands of the parent or guardian. Adoles- for medical treatment with the assent of the child cents are caught in a limbo-like state between the whenever possible.5 Pediatric healthcare providers dependency of childhood and the autonomy of adult- may face problems with surrogate decision making. hood. Their cognitive ability and capacity to reason Although the law provides parents and guardians 4 are similar to those of an adult. However, adolescents discretion in raising their children, their religious and may lack the moral responsibility, judgment, and ex- social beliefs may interfere with the best interests of the perience to understand the outcome of their actions child. When this occurs, healthcare providers must look and decisions. They may have more volatile emotions to the state and the legal system for answers.5 and may look only at short-term consequences. Thus, When a minor is deemed incompetent and unable they remain in an ambiguous state regarding self- to give informed consent, giving assent allows the ado- determination. The legal determination of ‘‘majority’’ lescent’s voice to be heard and promotes the perception of has been defined by chronological age (18 years in empowerment via participation in medical decision all but 4 states), marital or parental status, and self- making. The assent process should include the following: sufficiency, whereas the ethical determination of minors’ decision-making capabilities has been much more 1. a developmentally appropriate explanation of complex.4 Determination of a minor’s competence for the medical condition and the treatment, medical decision making should include evidence 2. an assessment of the minor’s understanding of the that the minor has the ability to understand the pur- information and how his or her decision was made, and pose of treatments, risks, both long- and short-term 3. an expression of the minor’s willingness or consequences, benefits, and alternatives to treat- unwillingness to allow treatment.5 ments. In addition, evidence must be present to ensure that the minor is able to make an informed decision Healthcare providers have a legal and ethical respon- without coercion.4 sibility to protect the rights of minors by assuring that ............................................................................ they are well informed, confidentiality is protected, and they participate in decision making. In research, how- Informed Consent to Treatment ever, the inability of minors to give full, informed and Participation in Research consent to participation creates true ethical and legal dilemmas, which have been minimally addressed At the core of these issues is informed consent, which with parental/surrogate consent and child assent. The has been viewed by the courts as a basic right.1 paucity of medical research involving children and Informed consent and the right to refuse treatment adolescents has been blamed, by some, for the decline JONA’S Healthcare Law, Ethics, and Regulation / Volume 9, Number 3 / July–September 2007 101 Copyright @ Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. in adolescent health.6 This lack of research is partly treatment decisions other than those listed, the courts caused by the difficulty in obtaining true informed have recognized an exception to the common law rule consent and the legal and ethical concerns regarding of parental/guardian consent for medical treatment of a adolescent consent. This is true even though adoles- minor called the ‘‘Mature Minor Doctrine.’’2 A minor cents who have been deemed mature for medical who is deemed able to understand short- and long-term decision making may consent to research.6 consequences is considered to be ‘‘mature’’ and thus It is essential for minors to participate in medical able to provide informed consent/refusal for medical decision making for treatment and research to the best treatment.9 This ‘‘maturity’’ authorizes the minor to of their ability, and they must understand that they can make decisions regarding his or her medical treatment. refuse without any recrimination.7 They must also be It does not, however, provide carte blanche permission well aware of what is being asked of them and what for minors to make decisions regarding medical treat- will be
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