Pediatrics is a very unique healthcare specialty, especially considering the ethics behind who makes decisions that could potentially mean the life or death of a minor. This responsibility has automatically been given to parents of pediatric patients, but there are certain situations in which this responsibility should be in the hands of someone else. I believe that this right should not just be implied, but instead thoroughly well thought out in order to have a child be given the treatment of their best interest. Medicine is notorious for being a professional field that is never static- it is always changing and developing. However, the legalities of pediatric decision making haven’t seen any major changes, despite their issues. Considering pediatric neurological development and extreme religious beliefs of parents, the right to make medical decisions for children should be given to the pediatric patient or to both the physician and national court. If these changes were made, then lives of innocent children could potentially be saved.

Imagine being diagnosed with Hodgkin’s Lymphoma. Patients often begin to show symptoms which may include weight loss, lumps under the skin (which indicate enlarged lymph nodes), fever, and night sweats (Signs and Symptoms). When diagnosed, health care providers consider the development and stage of the disease to determine how long a patient has to survive and their chance of survival when deciding to undergo chemotherapy or radiation treatment. Chemotherapy has severe side effects, such as pain, nausea, fatigue, blood disorders, damage to the nervous system (which can sometimes be permanent), hair loss, and loss of the ability to reproduce (Side Effects of Chemotherapy). Patients undergoing this treatment are subjecting themselves to pain, discomfort, and risking permanent damage to their bodies- all for a chance (not a guarantee) to survive cancer.

Cassandra Callender, a 17 year old girl from Connecticut was given this diagnosis. She considered having chemotherapy to treat her cancer, which would give her an 85% chance of survival. She thought about what she wanted for herself and came to the conclusion that chemotherapy was not a treatment she would like to pursue, considering the side effects and seeing it as “toxic harmful drugs” (Leonard). If Cassandra had been just one year older, she could have refused treatment all together. However, she was not opting to seek no treatment whatsoever, but wanted to pursue an alternative treatment. This treatment would have less side effects, but is not as common and does not have as much statistics on success rates. Despite her maturity and only being months away from legal capability to make medical decisions, authorities came to her home to take her to the hospital and force her to undergo chemotherapy. After months of forced treatment, Cassandra’s Hodgkin’s lymphoma relapsed and when she turned 18, she turned to pursue alternative treatments with hopes of success. In a CBS morning broadcast, the popular media source claims that Cassandra’s decision was probably entirely influenced by her mother and that she is not mature enough to make such decisions for herself (Connecticut Teen). This may be the opinion of most Americans because in history, it has been generally accepted that people under the age of 18 are incompetent. However, when looking at the neurological development in pediatric cases, this could be disproven and Cassandra’s case could be seen in a different light, allowing her to make the medical decision she is most comfortable with.

There is another case involving a pediatric patient diagnosed with Burkitt’s lymphoma, a cancer of the lymph system, similar to Cassandra’s. Colin Newmark was 3 years old at the time of his diagnosis. He was given only months to live if the option of chemotherapy treatment would not be pursued. If the chemotherapy treatment option was given to Colin, he would have a forty percent shot of survival and living his life cancer free. With the chemotherapy, of course, there are the side effects that were mentioned earlier in Cassandra’s case. Colin’s parents were Christian Scientists (a religion) and were residents of Delaware. Their faith led them to make the decision that “rather than allowing an uncertain and painful medical treatment, they would seek treatment through their church” (Black). The state of Delaware attempted to gain temporary custody of Colin and force chemotherapy treatment on to him. The case went to the supreme court and they ruled in favor of the parents in Newmark v. Williams (Black). They stated that the parents were exercising their First Amendment right to practice religion and that the child would be better off in a comfortable environment rather than in a hospital undergoing pain for a treatment that is not guaranteed to work. This is a case in which the right to make a medical decision for a child should be taken from the parents and given to both the courts and physicians. Colin was at such a young age and was therefore enable to have his own opinion on religion, so his parents refusal of treatment caused his death that could have been prevented with medical treatment. 

These are only two cases that highlight the issues of legalities involved in medical decision making for pediatric patients. There have been countless cases in the United States in which children have been denied the treatment option that is best for their health and wellbeing because of laws that are in place. As someone hoping to go into the healthcare field, I am aware of the importance of this issue even though it is not widely debated in America. 

The laws regarding pediatric decision making are not nationally equivalent- they vary state by state. There is a legal provision called the Mature Minor Doctrine, which legally recognizes that some minors have the level of neurological development that is sufficient enough to allow them to make their own informed medical decisions. This encompasses unemancipated minors (still at least partially dependent on a parent or guardian) and allows them to make treatment decisions without informing their parent or guardian, or to go against their parent or guardian’s treatment decision for them. This provision is helpful, but unfortunately, it has not been changed to mirror progression in medical ethics. In fact, “less than one-fifth of the states (8) have a broad mature minor exception to the standard requirement of parental consent. The remainder have no exception at all (34), have significantly narrower or conditioned versions (6), or permit minors of any age to consent to treatment in all or specific circumstances (3)” (Coleman, Rosoff). These laws are not based on an individual’s “cognitive capacity and social maturity”, but rather on “the fact that individual rights, including parents’ rights, belong almost exclusively to adults” (Coleman, Rosoff). This means that current laws reflect beliefs that were accepted when the foundation of the United States was still in works, and not the recent and ever-progressing research done on pediatric decision making capabilities. 

Another major law that provides an exception to giving the right to make medical decisions solely to parents is the Emancipated Minor exception. This law also varies state to state. Generally speaking, there is usually a minimum age requirement and requirement of financial independency. Some possible examples of an emancipated minor include being “self-supporting and not living at home, married, pregnant or a parent, in the military, declared emancipated by the court” (Maradiegue). This provides protection for minors with parents who are unfit to parent, who are forced to live independently. However, it gives medical independency to minors in different situations, and “the courts determined that minors would be more likely to seek treatment for sensitive issues if they were not required to notify parents”, such as “substance abuse, sexually transmitted diseases, and contraception” (Hickey). In this sense, this doctrine is aimed towards helping minors who have gotten involved in things that are most likely frowned upon by parents and guardians. It does not help minors who are diagnosed with unpreventable diseases and are not given the best treatment because of nonexistent laws that could help them. 

In cases of religion when parents refuse to treat their child, there are laws protecting the rights of parents, even if this means allowing a child to die. This is in accordance with first amendment rights. There are some exceptions and limitations to using religion as an excuse for child neglect and what could be considered homicide, but only in 5 states are there laws with no exceptions to not treating sick children: “Hawaii, Nebraska, Massachusetts, Maryland, and North Carolina” (Hall). 

Research on the neurological development of adolescents shows that most teenagers are fully capable of making autonomous medical decisions, just as adults are. Prior to the late 1990’s, research done on this topic focused widely on the cognitive development and ability to make informed decisions. Adolescents aged 15 and above show the same mental capacity and capabilities as adults in this respect (Steinburg). Preteens and young teens see a phase of synaptic pruning, “a period during which major improvements in basic cognitive abilities and logical reasoning are seen”.  This information is still true today, and there has been no new evidence that disproves that people of this age are cognitively equal to adults. However, researchers have focused on another aspect when examining a minor’s ability to make medical decisions: emotional maturity.

It is true that adolescents do not have a complete neurological developmental maturation in every aspect. There are areas that are not fully developed until early adulthood. When considering judgement, it can be argued that cognitive capabilities are a factor, as are emotional factors, which can be characterized by “impulse control, susceptibility to social influence, and the appraisal of risk and reward interacted with logical reasoning abilities” (Steinburg). Teenagers are not fully developed in this aspect. In early adolescence, there are changes in dopamine, which are involved in an increase of pleasure and sensation seeking. Lastly, a neurological aspect that is not fully developed until early adulthood is emotional regulation, which effects self control. 

These differences make a grey area in which a person can be entirely declared neurologically developed. Teens lack emotional maturity and are therefore highly influenced by peer pressure, but their cognitive abilities and logical decision making skills are fully matured by early adolescence. These differences make law makers shy of giving adolescents medical autonomy because they are technically not fully developed. However, the aspects of the brain that are important when making medical decisions are fully developed by this time. Emotional factors, peer pressure, and impulse driven decisions are not factors that would influence a medical decision, but instead would influence a teen to break a law in a social setting. The two are different types of decisions and should be treated as such in order for the law to be in accordance with neurological development studies. 

The topic of neurological development ties into the topic of medical decisions made by parents that are religion based. The concept of faith healing is commonly practiced in religions of “Christian Scientists, Pentecostalists, members of the Church of the First Born, the Followers of Christ, and myriad smaller sects” (Hall). This practice dismisses the idea of science based medicine and rejects the use of medicine entirely. They believe that all healing should be done through faith, which includes “prayer, anointing with oils, and sometimes exorcisms”. Choosing to ignore illnesses (and often denying the presence and reality of) often leads to the death of children that could have easily been saved by modern medicine treatments. Alayna Wyland was 18 months old when she was taken in time to have a hemangioma obstructing her left eye to be treated just in time to save her vision. Her parents did not believe in illness or using medicine to treat it. There are many cases in which children are left at home to let a disease slowly and painfully kill them. In the Faith Tabernacle Church, there was a measles outbreak involving 491 people and killed 6 children. Members of the same church allowed their 16 year old daughter to die of diabetes (which is extremely treatable), and their only sentence was “two years’ probation and community service at a hospital”. 

Some argue that faith is a subject that should not be ignored by the law, and that parents have the right to do what they think is best for their child in accordance with their faith. However, I previously mentioned that humans are not entirely emotionally mature until early adulthood, and emotions are a large factor when deciding one’s faith and beliefs. Young children that cannot even speak yet die because of the faith of their parents. They have no capability of having a secular basis, so they should not be allowed medical neglect and eventual death because of the religion practiced by their parents. Once a child is of age and able to make these decisions independently with clear conscious, they can be allowed to refuse treatment with reasoning based in their faith. Until this point is reached, medical decisions for the child should be made by both their physicians and government. 

When parents make decisions for their child’s course of medical treatment, they most often do what they think is best for their child. In making decisions, “familial and emotional factors may have a more significant role than recommendations from the physician or other individuals” (Lipstein). A parent is highly emotionally driven, and they are often overcome with feelings of guilt for their child being hospitalized and in bad health. The facts presented by the physician are often not even of the upmost importance when deciding treatment for their child. Instead, they rely on personal experiences and similar experiences of friends, family, and acquaintances to shape their decisions. This research shows that while parents often truly do mean the best for their child, they still might not make the right decision for them. Another finding was that “qualitative and observational research shows that parents may need assistance in determining when and how to include children in decisions” (Lipstein). The American Academy of Pediatrics states that “a child as young as 7 can express an informed agreement with proposed medical treatment”, and the goal of doing so is to “promote good decision making skills and build that growing sense of autonomy as a child gets older, so that by the time children reach adult autonomy, they understand the complexity of medical decision making” (Klass). Parents should be legally guided into involving their children in making medical decisions so their opinion is considered and so they can gradually prepare themselves for having that autonomy. 

In conclusion, the legalities surrounding pediatric decision making should be altered in order to ensure that a child is given the best medical treatment possible. There are laws that provide exceptions to all decisions of children 18 and under to be made by a parent/ guardian, but they are not sufficient. When considering neurological development, teens are fully capable of having medical autonomy at an age earlier than 18. They are capable of cognitive and logical decision making, which is what is necessary in medical decision making. In cases of the faith of parents causing their children to not get the treatment they need, the right to make a child’s medical decisions should become the responsibility of what the physician thinks is best and what the court approves. Parents are often emotionally driven and unaware of what is really best for their child, so they should legally be required to gradually involve their children in medical decision making as they grow. This would comfort parents in knowing that their child is in accordance of what they believe is best, and it would give their children a good understanding of the responsibility of what medical autonomy is. 
