1. Adolescent Rights in End-of-Life: The Mature Minor Doctrine
Wisconsin vs. Illinois
This presentation presents existing research on adolescent brain development in relation to adolescent rights in healthcare with emphasis on end-of-life decision-making. This presentation will also compare current policies surrounding the Mature Minor Doctrine in Wisconsin versus Illinois and end with presenting on "Voicing My Choices" as a recommendation to facilitate end-of-life conversation and planning with adolescents facing chronic and serious illnesses.
Ashley Monahan, PPC Social Work Trainee

2. Case Example Connecticut case (2015)
Cassandra Case that sparked my interest: Fox News (January, 2015).
Connecticut 17 ½ year-old diagnosed with Hodgkin’s Lymphoma forced to undergo chemotherapy by a court-order after being taken into custody because Cassandra did not want to undergo chemotherapy and her mother supported her decision. She was deemed incompetent in court to make her own medical decisions and refuse treatment. Cassandra did not want to put “poison” into her body arguing that it would cause more harm to her body than good and wanted to explore alternative options. Cassandra and her mother argued in court that she was mature enough to make her own decisions since she was only 6 months shy of her 18th birthday and that the state should recognize the Mature Minor Doctrine, which they do not. After being denied the ability to refuse chemotherapy, Cassandra was then taken into state custody and appointed a guardian to consent to the chemotherapy for her. The hospital then had to bound her to the bed and place a port in her chest to administer the chemotherapy against her will.

3. What is the Mature Minor Doctrine?
Initially made for minors to consent to treatment in emergency situations
Expanded for minors to consent to other medical procedures
Refusal/withdrawal of treatment in some states
The Mature Minor Doctrine gives minors the right to consent to medical procedures if they can show that they are mature and competent enough to make appropriate decisions on their own (Driggs, 2001). Initially, the Mature Minor Doctrine was made for a minor to have the ability to consent to treatment in emergency situations where a parent or guardian is not able to give consent; however, most states have expanded on this (Partridge, 2013). The majority of states have set policies for minors to consent to specific medical procedures without parental consent, such as access to birth control and treatment of STDs, alcohol and drug treatment, and mental health treatment (Coleman & Rosoff, 2012; Smith, 2013).
As healthcare providers recognize the need for adolescents to be more involved in their healthcare and gain more independence and autonomy as they age, there seems to be more and more discussion and debate surrounding where to draw the line between adolescent consent versus parental consent. This is especially true for adolescents with chronic health conditions. Specifically, much of the topic of debate surrounds adolescents’ rights in end-of-life decisions with refusing and withdrawing life-sustaining treatments. While most states allow adolescents to consent to medical procedures and treatment, the majority of states do now allow adolescents to refuse or withdraw treatment; the majority of healthcare decisions rest on the parent’s authority and right to make decisions for their minor children.
-While the majority of states have Mature Minor Docrtines for CONSENT to treatment, currently, only Illinois and Massachusetts also include in the Mature Minor Doctrine the right to REFUSE treatment, even those that are life-sustaining
(Driggs, 2001; Coleman & Rosoff, 2012; Smith, 2013)

4. Maturity
An intellectual appreciation of the causal connections between ones choices and the consequences that will likely follow
A realistic affective and evaluative capacity to appreciate the weight and significance of the risks and benefits, proximate and distant, associated with the consequences of one’s choices
A self-determining capacity to choose or to decline to make a choice while not being unduly swayed by impulse
(Partridge, 2013)

5. Arguments Against Mature Minor Doctrine
Immature adolescent brain
Prefrontal Cortex not fully developed until age 21
What my peers think > what is best for me
Mental health issues
Society values and State interests
Many researchers agree that adolescents do not possess the ability to make mature and thoughtful decisions. Many studies have shown that adolescents have a developing, incomplete, prefrontal cortex. This section of the brain is mostly responsible for impulse control, long-term planning, and cost-benefit analysis, is said to not be fully developed until the age of 21 (Pustalinik & Henry, 2013; Partridge, 2013). Adolescents tend be very impulsive and think only of short-term benefits and consequences rather than long-term without taking time to analyze all options. Adolescents also tend to be easily influenced by their peers and family members (Driggs, 2001; Hickey, 2007; Pustalinik & Henry, 2013).
In addition to underdeveloped brain functions that are necessary for making mature and thoughtful decisions, adolescent’s decisions are also more likely to be swayed by emotions. Adolescents may be more susceptible to mental health issues, such as depression, that can alter how they think and hinder their ability to make rational decisions. This may be especially true for adolescents experiencing chronic or serious health issues (Driggs, 2001). According to Driggs (2001) adolescents with chronic or serious health issues are more likely to suffer from mental health issues, such as depression, that can leave them feeling uncertain about their future, experience feelings of hopelessness, have low self-esteem, and experience feelings of low self-worth due to the burden and stress they feel they cause others, such as parents and other caregivers. These factors can significantly alter the adolescent’s ability to think rationally which adversely affects their decision making capabilities.
It is society’s belief that parents have the right to care for their minor children how they see fit, as long as they do no harm. Until the age of 18, the belief is that parents are, in most cases, the best decision makers for their minor children and will make decisions based on the child’s best interest. States also have four main interests that are frequently used for arguments against using the Mature Minor Doctrine for refusal of treatments; these interests are preserving life, preventing suicide, protecting third party interests, and protecting the integrity of the medical profession (Fouts, 1990; Driggs, 2001).
(Fouts, 1990; Driggs, 2001; Hickey, 2007; Partridge, 2013; Pustalinik & Henry, 2013)

6. Arguments For the Mature Minor Doctrine
Cognitive development is not as concrete as we may think
Individuals develop at different rates than others due to individual personality and life-experiences
Self-determination and Autonomy
Increasing independence in healthcare
Despite research stating that adolescents’ brain development and emotional states prevent them from making mature and thoughtful decision, other research suggests that the adolescent brain may be more developed than we may think. Some psychologists have proposed that the last stage of cognitive development occurs between ages 11 and 15 and that, in many cases, by the age of 15, an individual has developed a mature thinking process. Other researchers have found that the decision-making process of some 14 year-olds may be comparable to that of many adults (Driggs, 2001). More recently, new research has discovered that adolescent’s brain development may not be as concrete as once thought, rather individuals develop at different rates than others due to individual personality and different life-experiences. Some researchers argue that some adolescents reach a state of rational thinking and cognitive development sooner than others. Many may reach their potential before the age of 18, while some may not ever reach their potential even as adults. Some evidence has shown that many adolescents have attained a stage of cognitive development that surpasses much of the general adult population (Smith, 2013). Also, many studies have shown that older teens and young adults generally have similar cognitive capacities (Hickey, 2007; Coleman & Rosoff, 2012). While it is true that not all adolescents are intellectually capable of making mature decisions, the same could be said for much of the adult population. Healthcare providers, along with parents, should recognize the evolving capacities of adolescents, along with the values of self-determination and autonomy, for making healthcare decisions (Hickey, 2007; Coleman & Rosoff, 2012).
-We will explore more arguments for the Mature Minor Doctrine later on in the presentation
(Fouts, 1990; Driggs, 2001; Hickey, 2007; Coleman & Rosoff, 2012; Smith, 2013)

7. Wisconsin Policies and Minors Rights
Parents generally have the right to made medical decision on behalf of their minor children, including the refusal and withdrawal of treatment
Definition of decision-making capacity
(focus on refusing and withdrawing treatment)
In Wisconsin, the laws state that parents have the right to make medical decisions for their minor child including refusing and withdrawing medical treatment unless unreasonable. Policies state that minors do not have decision-making capacity. Individuals under the age of 18 are not allowed to refuse or withdraw treatment without the parent or guardian’s consent. When minors disagree with treatment or procedures’ being consented to on their behalf by their parents, the hospital Ethics Committee is consulted to help resolve the disagreement. Although policies state that the minor’s wishes should be considered whenever possible, arguments and disagreements between the minor, parents, and healthcare providers typically resolve in favor of the parent’s wishes and the state interest in preserving life. Even with parental or guardian consent to refuse or withdraw treatment in agreement with the minor, most cases result in the minor child being taken into custody by court and having a guardian appointed to the child to consent to the treatment on their behalf due to state interests in preserving life if the court finds the parents to be medically neglectful by refusing or withdrawing treatment for their child. However, if the child’s prognosis is poor and the child’s quality-of-life is perceived by the parents are unacceptable, parents do have the right to refuse or withdraw life-sustaining treatment for their child.
Wisconsin recognizes the Mature Minor Doctrine only for consent to certain medical procedures such as emergency situation, reproductive health, and alcohol and drug treatment to an extent. Wisconsin has a Mature Minor Exception where individuals 14 and older, if deemed mature by clinical evaluation, have the ability only to consent to certain procedures and treatment that are routine and without serious risk, but it is encouraged to gain parental involvement and consent. Also, emancipated minors are able to give consent to medical treatments. Emancipated minors are those who are under the age of 18 but are emancipated due to marriage or military service.
- Decision-making capacity is defined in policies as the “ability to receive information and understand the consequences of one’s decision, and to communicate decisions to such an extent that the individual patient can manage his or her own healthcare decisions….minors, as a general rule, by law, are not capable of making their own health care decisions without parental consent”
-Minors who are parents can make medical decisions for their own child, but not themselves
References

8. Illinois and Minor Rights
IL Supreme Court Case (1987)
Arguments from case in favor of Mature Minor Doctrine and the refusal of life- sustaining treatment
Juvenile Court Act
Emancipation of Mature Minors Act
Consent by Minors to Medical Operations Act
Common Law Rights
State Interests
Religious influences
Quality-of Life
(Focus on refusing and withdrawing treatment)
In Illinois, the Mature Minor Doctrine is recognized not only for consent to treatments, but also for refusal of treatments, even those that are life-sustaining. 17 year-old Jehovah’s Witness did not want to undergo blood transfusions because it went against her religious beliefs; her mother agreed with her decision. Her physician thought she was mature enough to make such a decision on her own, however, the case had to go to court for a final decision. Initially, the courts believed the mother was being medically neglectful and took her into custody and granted a guardian to consent to the blood transfusions for her. However, as the case moved forward to the IL Supreme Court, the court judge found her to be mature enough to make medical decisions on her own and was doing so independently of her mother’s beliefs. Therefore, the mother was no longer being charged with medical neglect and the 17 year-old was deemed competent and mature enough to make medical decisions, including those to refuse or withdraw life-sustaining medical treatment. Since the case ended after the minor’s 18th birthday, the courts went on to establish a foundation for future cases. The results of the trial were quoted in Fouts (1990) stating that
“If the evidence is clear and convincing that the minor is mature enough to appreciate the consequences of her actions, and that the minor is mature enough to exercise judgment of an adult, then the mature minor doctrine affords her the common law right to consent to or refuse medical treatment…a minor who can demonstrate to a trial judge that she is sufficiently mature to make her own healthcare decisions has the right to bodily self-determination and right to refuse even life saving medical treatment.”
The many arguments used to change the law in favor of the Mature Minor Doctrine and the refusal of treatment are as follows.
The courts cited three major Acts to argue for the Mature Minor Doctrine: The Juvenile Court Act, which states that minors can be deemed competent and mature enough to take responsibility for their actions for certain crimes and be tried as an adult; The Emancipation of Mature Minors Act, which states that minors can be found mature enough to live independently from their parents or guardian in cases of marriage, military service, or being financially and emotionally able; and the Consent by Minors to Medical Operations Act, which states that minors can consent to certain medical procedures and can seen certain medical treatment without the consent of a parent or guardian. Because of the Consent by Minors to Medical Operations Act, Emancipation of Mature Minors Act, and Juvenile Court Act, the courts argued that if minors are mature enough to consent to treatments, be emancipated from their parents, and be tried in adult court, they are mature enough to be allowed the common law right to refuse medical treatment as well. The courts recognized that an individual does not “undergo any magical transformation on [their] 18th birthday whereby [they] are suddenly endowed with the ability to make crucial medical decision” and that individuals may reach a sufficient level of maturity before the age of 18 (Fouts, 1990). Additionally, the courts recognized that a competent individual, even a minor, should be afforded their common law rights as adults would, especially those of bodily self-determination and religious freedom. A competent individual should have the right to absolute control over their own body. Mature minors should not be denied their rights as a citizen of the United States, such as their rights to religious freedom (Fouts, 1990).
There was also the argument of the State’s interests to preserve life, prevent suicide, protect third party interests, and protect the integrity of the medical profession. The argument was that these four state interests normally would not be sufficient to overcome the right of an adult to control their own healthcare decisions, so they also should no longer overcome the mature minor’s rights to make their own independent medical decisions under the common law that has now been extended to mature minors. Also, in the interest of preventing suicide, the minor has not “purposefully induced a fatal condition upon themselves” so refusing life-sustaining medical treatment would not, on its own, be considered grounds for possible suicide ideation/attempt.
“If the patient is a minor I would want to be sure that they were able to express their wishes independently from those of their parents/guardians. For example a 17yo patient who is a member of the Jehovah’s witness organization, has been so all her life, is able to articulate what she believes and why, and what are the consequences of her decision. Any patient, adult or pediatric, is going to be “influenced” by their family or others. The question is whether the patient is capable of understanding the difference (if there is one) between their beliefs and those of their parents.” –(Anonymous, personal communication, March, 2015).
The individual is the one experiencing the health issues and is the only one who can really attest to how the condition and treatments are affecting them and how their quality-of-life is portrayed, so quality-of-life is really taken into consideration on these cases –(Anonymous, personal communication, March, 2015).
(Fouts, 1990; Anonymous, 2015)

9. Why Does This Matter? Voicing My Choices
nonprintpdf/Voicing_My_Choices.pdf
Because minors do not have decision-making capabilities in end-of-life in Wisconsin, healthcare providers should help facilitate conversations about end-of-life with families so minors can have a voice and make their wishes known. End-of-life discussions are difficult to have, especially with adolescents and young children, so the adolescents and children themselves typically are not involved in these discussions between parents and healthcare providers. In a study of adolescents diagnosed with chronic or serious healthcare issues, about one-third of adolescents had stated that they had never talked with anyone about their end-of-life wishes, but most of the adolescents said they would like to have these conversations with their parents and healthcare providers so they can make their wishes known. While the majority of these adolescents felt that these end-of-life discussions should have been had when they were first diagnosed with a life-threatening illness, many also felt that end-of-life discussions are important to have even before an individual becomes sick (Garvie, Jianping, Wang, D’Angelo, & Lyon, 2012).
There are many reasons that parents and healthcare providers do not include minors in these discussions including fear of eliciting emotional damage and a fear of death within the child or adolescent, belief that the minor does not fully understand the situation, parental authority in decision-making, and not wanting to upset the minor child or adolescent. However, as children and adolescents are starting to be encouraged to become more involved in their healthcare and with the increasing establishment of pediatric palliative care teams, healthcare providers are seeing a need to include children and adolescents in end-of-life discussions in a developmentally appropriate way (Michealson & Steinhorn, 2007). Including children and adolescents in these end-of-life discussions not only empowers the individual to voice their opinions and wishes, but also gives them a sense of control over the decisions being made for them. In recent studies, adolescents who were included in these discussions felt more respected, felt a greater sense of purpose, felt like their wishes were being included in the care plan, felt a sense of control, and had overall greater satisfaction with the decisions that were made (Garvie et al, 2012; Michealson & Steinhorn, 2007; Werner et al, 2012). Also, parents and healthcare providers are more aware of the needs of the child/adolescent, can help the child/adolescent understand the situation better and why the decisions being made are being made, and can incorporate the child/adolescent’s wishes in the decisions being made, not only at end-of-life, but also after the child passes. In a recent study of parents who had a children die from a chronic or serious illness, most parents who did not talk with their child about death and their wishes regretted it, but the parents who did have those discussions with their child felt a sense of relief after the child passes and did not regret having those discussions. Since the families knew their child’s wishes, they were able to incorporate those wishes during the end-of-life decisions being made as well as after the child passed, such as making funeral arrangements that reflected their child’s wishes (Michelson & Steinhorn, 2007).
Voicing my Choices is a type of advanced directive for minors, obviously one that is not legally binding in nature, to encourage involving minors in end-of-life discussions and a way to empower minors to voice their wishes
Until more states jump on the Mature Minor Doctrine bandwagon and follow Illinois’ suit, encouraging end-of-life discussions with adolescents and their complete involvement in those discussions will pave the road to creating more autonomy and decision-making authority for adolescents in their own healthcare.
(Aging with Dignity, 2012; Garvie et al, 2012; Michelson and Steinhorn, 2007; Werner et al, 2012)

10. References
Aging with Dignity. (2012).Voicing my choices: A planning guide for adolescents and young adults. Retrieved from
Coleman, D. L. & Rosoff, R. M. (2012). The legal authority of mature minors to consent to general medical treatment. Pediatrics, 131(4), doi: /peds
Driggs, A. E. (2001). The mature minor doctrine: Do adolescents have the right to die? Health Matrix Clevel, 11(2), Retrieved from
Fouts-Skeels, J. (1990). In re E.G: The right of mature minors in Illinois to refuse life saving medical treatment. Loyola University Chicago Law Journal, 21(4). Retrieved from
Fox News. (January, 2015). Connecticut Supreme Court upholds ruling that teen must undergo chemo. Retrieved from upholds-ruling-that-teen-must-undergo-chemo/
Garvie, P. A., Jianping, H., Wang, J., D’Angelo, L. J., & Lyon, M. E. (2012). An exploratory survey of end-of-life attitudes, beliefs and experiences of adolescents with HIV/AIDS and their families. Pain Symptom Manage, 44(3), doi: /j.jpainsymman
Hickey, K. (2007). Minors’ rights in medical decision making. Healthcare Law, Ethics, and Regulation, 9(3)

11. Michelson, K. N. & Steinhorn, D. M. (2007)
Michelson, K. N. & Steinhorn, D. M. (2007). Pediatric end-of-life issues and palliative care. Clinical Pediatric Emergency Medicine, 8(3), doi: /j.cpem
Partridge, B. C. (2013). The Mature Minor: Some Critical Psychological Reflections on the Empirical Bases, Journal of Medicine and Philosophy, 38, Doi: /jmp/jht013
Pustalinik, A. C. & Henry, L. M. (2013). Adolescent medical decision making and the law of the horse. Journal of Health Care Law & Policy, 15(1)
Smith, C. A. (2013). A case for autonomy: An examination into an adolescent’s right to refuse treatment. Seton Hall University. Retrieved from ext=student_scholarship
UW Hospitals and Clinics. (2013). Guidelines for Decisions to Limit Life-Sustaining Medical Treatment. (8.25). Madison, WI: UW Hospital And Clinics
UW Hospitals and Clinics. (2013). Informed Consent. (4.17). Madison, WI: UW Hospital And Clinics
Werner, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5). doi: /peds