Volume 5, Issue 4- June 2002

Determining the extent to which children can consent to and refuse healthcare is one of the issues I have encountered as pediatric physical therapist and a father of two young boys. The relatively recent development of the children's rights movement, along with the recognition of the progressively sophisticated decision-making skills children have as they age, has led to a re-examination of the ethical and legal status of health care decision-making autonomy in minors.

The irony underlying the principle of respect for autonomy-as it is practically applied-is that it requires an individual to prove that he or she is competent to make decisions free from coercion and undue influence (i.e. decisions are made voluntarily). Clinicians act as decision-making gatekeepers and "conflict between the patient's wishes and the physician's judgment about that patient's best interests typically provokes an inquiry into the patient's general competence."1 In other words, we tend to assume an individual's incompetence rather than his or her competence. This burden of proof places the patient in a position of weakness, relative to physicians, even before a patient-clinician relationship has commenced.

In this article, I would like to explore the application of the principle of respect for autonomy as it applies to health care decision-making by adolescents. I will argue that there is no relevant difference between the health care decision-making competence of older adolescents and that of adults. Further, using a case currently in the news and the courts, I will argue in favour of respecting the decision-making autonomy of older adolescents, even when this means refusing health care in the context of grave illness.

Competency in Adults & Children

It is argued that adults ought generally to be presumed to be competent.2 On the other hand, minors have long been assumed to be legally incompetent, unless they are "emancipated"3 (i.e., married, no longer living with their parents, or enlisted in the military). Legal competence is also determined by the "mature minor" exception which allows competent minors to obtain health care without parental consent. This determination is founded on a minor's ability to make a voluntary decision based on an adequate understanding and appreciation of the type and consequences of the decision to be made (e.g., the types of treatment in case of health care). However, "courts and legislatures have rarely recognized the [mature minor exception] where the parent imposes treatments upon an unwilling mature minor."4 These decisions may be based on the assumption that mature minors lack the higher level of competence, resulting from age, required to refuse care.5

Presuming Capacity in Adolescents

I believe that there are good moral reasons for reconsidering traditional definitions and conceptions of autonomy, in particular the presumption that children, especially older adolescents, are not competent to decide whether to accept or refuse health care.

First, chronological age, in and of itself, should not be the primary criterion used to determine an individual's competence to accept or refuse health care. Individuals whose age is on either side of any legal age of majority at times can and do exercise prudent judgment in decisions about their health. It must be remembered that "the age of majority fails to take into account a young person's individual development or maturation; it might just as easily have been set 2 years higher or 3 years lower."6 In other words, the age of majority is an arbitrary standard determined by convention. As evidence, one need only look south of the border where the rights to vote and join the military are acquired at 18, while alcohol remains forbidden until 21.

Second, even young children and those with mental challenges have the capacity to act as moral agents. Moral agency encompasses the ability to voluntarily and purposively further the interests, especially those of well-being and freedom, of persons other than or in addition to oneself.

Children as young as preschoolers can and do act in ways that indicate an understanding of the moral content of their actions. Mahowald cites the example of a preschooler complaining that another child is cheating during a game of hide-and-seek. This act reveals an understanding of the wrongful effects of cheating on the child him/herself and other game-players.7 Children are able to understand and cope with difficult concepts, such as illness and death, when these are explained to them in ways corresponding to their experience and particular stage of reasoning.

As childhood gives way to adolescence, an individual's capacities for comprehension, reasoning, and moral agency grow along with his/her body. Respecting the moral agency of children, especially older adolescents, includes respecting their competence to make free and informed decisions about issues which affect them, such as their health.

A third reason for presuming capacity of adolescents is that there appears to be no relevant difference between adults and adolescents (particularly in middle and late adolescence-14 years and older), when it comes to their decision-making skills, including their cognitive abilities, risk perception, and bias toward consequences in the near future.8 If adolescents can be shown in general to have the capacity for self-determination, as I believe that they have been, then older adolescents should be presumed to be as competent as adults to consent to or refuse health care.

Lastly, and probably most important from the perspective of refusing unwanted treatment (i.e., "negative" moral rights), all individuals have a basic legal and moral right to "be free from bodily harm and interference to remain untouched by others except where a person being touched consents."10 Moreover, this right must remain "even if [the] illness will result in death."11

This basic right stems from the belief that each individual, irrespective of age, is in sole possession of his or her self; a fact recognized by even very young children and demonstrated by the oft-heard admonishment "You are not the boss of me!" The application of this fundamental principle of non-interference "places the burden of justification on the one who intervenes" and requires the reason for intervention to be "sufficient to outweigh…legitimate interest(s) in making self-determining choices about…medical care."12

Mia's Story

That this discussion has grave relevance is demonstrated in the case of Mia (not her real name). MIA is a 16 year-old girl who has leukemia. She lives in Calgary and follows the teachings of the Jehovah's Witness faith.

As part of the treatment for her cancer, blood transfusions were indicated as medically necessary. MIA expressed a desire not to have the transfusions as they went against her religious convictions.

MIA's healthcare providers and her father were uncomfortable with this decision and the issue was taken to court where Justice Adele Kent of the Court of Queen's Bench ruled that the transfusions, consented to by MIA's Jehovah's Witness father and advocated as a life-saving measure by doctors at Alberta Children's Hospital, were in her best interest. Although MIA was deemed a mature minor by Justice Kent, she was declared incompetent by the court because of undue influence by her mother and the church, and, in February 2002, was appointed a temporary ward of the court. . MIA was thus required to have the transfusions against her wishes.

Thoughts on MIA's Story

Parents and medical professionals clearly have an obligation to act in the best interests of children in their care, who have a correlative "positive" moral right to be protected from harm. This can mean that children must occasionally undergo unpleasant, and thus undesired, procedures. However, accepting the moral agency of children and the obligation to respect the principle of noninterference requires that adults dampen the temptation to impose excessive and unilateral constraints on competent young people in the name of protection-even when this may result in harmful consequences or even death.

Of course, competence is developed and not discovered. Benefactors undoubtedly have a duty to guide and enable the development of their children's abilities to care for themselves. This occurs by providing them with a set of progressively challenging responsibilities for their lives, ultimately culminating in their competence at self-governance (autonomy).

A Relational Approach

In considering questions of autonomy, valuable lessons can be learned from care and feminist ethics. These approaches often place a high value on supporting individuals' decision-making in the context of interdependent relationships. The concept of "autokoenomy" refers to "patients [such as MIA] existing in a social world, where their ends and activities are defined in conjunction with others they trust [such as her mother and church]…[and who] could be helped to form relationships that would foster their decision-making in an interactive way."13

The moral agency that children have been shown to exhibit, and which is so crucial in our general acceptance of their competence to make decisions about themselves, is closely linked with the importance of social relationships. It is important that in our thinking about competence we consider both rights-based and relational or care ethics: "An ethic of care is committed to maintaining those relationships, an ethic of justice to ensuring that the relationships are not exploitative."14

References

1 Beauchamp, Tom L., Childress, James F. Principals of Biomedical Ethics. 4th Edition. Oxford UP, 1994, pg. 141.
2 Ibid.
3 Sigman, Garry S., O'Connor, Carolyn. "Exploration For Physicians of the Mature Minor Doctrine." The Journal of Pediatrics. Vol. 119, No. 4 (Oct. 1991): 520-525.
4 Plotkin, Robert. "When Rights Collide: Parents, Children and Consent to Treatment." Journal of Pediatric Psychology. Vol. 6, No. 2 (1981): 125.
5 Beauchamp, Tom L., Childress, James F. Principals of Biomedical Ethics. Pg. 140.
6 Plotkin, Robert. "When Rights Collide." Journal of Pediatric Psychology. Pg. 123.
7 Mahowald, Mary Briody. Women and Children in Health Care--An Unequal Majority. Oxford UP, 2000, pp.186-201.
8 Hyun, Insoo. "When Adolescents 'Mismanage' Their Chronic Medical Conditions: An Ethical Exploration." Kennedy Institute of Ethics Journal. June 2000: pp. 147-164
9 Buchanan, Allen E., Brock, Dan W. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge UP, 1989, pg. 243.
10 Calgary Health Servides Policy Manual. Legal/Legislation Ethics. 1990.
11 Heifetz, Milton D. Easier Said Than Done--Moral Decisions in Medical Uncertainty. Prometheus, 1999, pg. 77.
12 Hyun, Insoo. "When Adolescents 'Mismanage'" Kennedy Institute. June 2000: pg. 158.
13 Sherwin, Susan. No Longer Patient: Feminist Ethics and Health Care. Temple UP, 1993, pg. 156.
14 Mahowald, Mary Briody. Women and Children in Health Care. Oxford UP, 2000, pg. 188.

Announcements

The 9th conference of the Australasian Bioethics Society will be held 3-6 June 2003 in Queenstown, New Zealand. Please visit www.australasian-bioethics.org.au for details and registration information.

The PHEN Northern and Southern Alberta Offices both have libraries of books and videos that are open to PHEN members. Recently, the Northern Alberta Office has added the two books below. For a complete listing of the resources available, check our website at www.phen.ab.ca/loan/main.html.

Stories and Their Limits: Narrative Approaches to Bioethics. Hilde Lindemann Nelson, editor Routledge, 1997.

Cases in Bioethics: Selections from the Hastings Centre Report. Third Edition Bette-Jane Criger. St. Martin's Press, Inc., 1998.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.