Adolescent Autonomy and End of Life Decision Making

dicesare_500What types of decisions should adolescents be able to make? Are they competent and capable to make end of life decisions? Is it right to hold back information from the adolescent? These are the questions that come up when deciding whether an adolescent has the capability to have a say in their end of life decision. Although it may seem simple to say that they are not capable to do so, there are many factors that influence this complicated decision. This paper will explore these questions throughout many different lenses and eventually answer the question of how much say an adolescent should have in their own end of life decision. It will also evaluate the three stakeholders, the patient, parents, and physician, throughout the values autonomy, responsibility and the doctor’s care for the patient’s voice.


Introduction

Imagine you are a 17 year old adolescent girl who is has been battling Hodgkin’s lymphoma. You have an 85% chance survival if you go through with chemotherapy, but it would cause long-term bodily harm, like organ damage and infertility. After putting much thought into the decision, you decide that you do not want to go through with treatment because you want to look into alternative options. Do you believe you have the right to make this decision? Infact, Cassandra C. has experienced this incident. Cassandra, being a minor, believed she had a say in this decision and her parents supported her opinions about ongoing medical care (Kovner 1). But, unfortunately, Social Services and the state’s Department of Children and Families intervened and forced her to stay at the hospital until she completed court-ordered chemotherapy. Her parents did not have custody of Cassandra while she was undergoing treatment because they were ruled by the court as not having her best interests in mind. Following this case, questions have been raised about if adolescents are capable and competent enough to make their own medical decision or how much involvement should they have?

This paper will focus on the ethical issues revolving around adolescent decision making and the doctor-patient relationship in this situation. The controversy of whether adolescents should be allowed to make decisions about their own medical care at the end of life is a critical issue that is influenced by the doctor’s relationship with the patient and a patient’s age and competence. Many ethical issues are raised when discussing this topic such as autonomy, responsibility and the doctor caring for the adolescent’s voice in the decision. All of the stakeholders in this situation will be evaluated throughout the values presented, and this essay will portray three different points of view; the physician, the parents, and the adolescent patient. Eventually the following questions will be answered: Is an adolescent able to be involved in their end of life decision making? And how does the doctor’s role in this situation affect the adolescent’s competence and knowledge to be able to make an end of life decision?

 

Factual Information

Adolescence is the time period in a person’s life where they are going through dramatic changes in physical appearance but also in self-esteem, independence, social skills, and awareness. According to the World Health Organization’s definition of an adolescent which is consistent throughout many sources, an adolescent is an individual who is in the period between the ages of 10 and 19 years old. This age group is often split up into different age groups where there are older adolescents, teens, ages 13 to 19, and younger adolescents, or preteens, ages 10 to 12. In end-of-life decision making, adolescence creates a controversial issue between what is legal and what might be ethical. Any patient who is legally competent, or has the necessary ability, knowledge or skill, to make a medical decision has to be, in most cases, older than 18 years old. Therefore, parents are often in charge of most medical decisions for adolescents. As a minor in this situation, the adolescent and their parents are faced with a high impact decision of whether to include the adolescent in this process. The extent that adolescents are allowed to participate in health care decisions varies by state. However in general there are creative ways that doctors and parents incorporate adolescent participation in the decision making. In some cases, adolescents can be deemed a mature minor. A mature minor is an exception to the U.S. State Legislation that requires parental consent for medical treatment. Mature minors are “recognized by law as having the ability to make informed decisions about their own health care” (Hastings Center Guidelines 86). A mature minor is able to refuse or agree with a medical procedure which can sometimes disagree with the opinion of their parents.

Although adolescent end-of-life medical decision making may not be as prominent and discussed as adult end-of-life medical decisions, adolescents can also die from life threatening diseases such as cancer, congenital abnormalities, inherited disorders, or trauma. Adolescent decision making in any of these situations involves a surrogate or parent and the child, if they are old enough to understand the treatment options.

There are many other factors that influence the adolescent’s ability to be involved in the decision making process such as age, development, capability and knowledge. Also, the adult brain has significant differences compared to an adolescent brain, especially in decision-making and problem solving, which can greatly impact the involvement of an adolescent in end of life decision making. Studies on the brain show that the frontal cortex develops and matures into adulthood. According to an article on the teenage brain and decision making from the American Academy of Child and Adolescent Psychiatry, the frontal cortex is the “area of the brain that controls reasoning and helps [people] think before they act” (The Teen Brain: Behavior, Problem Solving, and Decision Making 1). Therefore, the prefrontal cortex plays a major role in how a person thinks, acts and behaves, which is especially crucial in a medical decision towards the end of life. Conforming to this research, adolescents are often less likely to think before they act and they don’t always consider the consequences of their decision. Although in most cases an adolescent isn’t mentally capable of making end of life decisions, there can be exceptions to this in which adolescents are fully capable, mentally and physically, to be involved in their end of life medical decision.

Generally, the role of the doctor for a patient in any medical condition is to promote, maintain or restore human health through study, diagnosis and treatment. Although this is the main objective, sometimes there are certain cases where doctors may not feel comfortable discussing medical treatment. Towards the end of life, doctors may often find it difficult to talk to adolescents about death and dying. Although this is true, it is essential to provide adolescents with knowledge about their medical condition so that they can have input in the decision made.  Without knowledge on their medical condition, they will not be competent and knowledgeable to be able to make an informed decision. Three reasons why a physician may not feel comfortable sharing information about end of life decisions to an adolescent are because they want to protect the adolescent from the reality of their death, which could cause them to lose hope, they don’t want to “overwhelm unprepared, vulnerable youth[s]” in order “to respect their autonomy”, and they don’t want to face the emotions that are revolved around death especially with an adolescent (Lyons 1). The doctor’s relationship with his or her patient in this process is crucial in order to provide adolescents with the information they may need depending on how the doctor feels about the patient’s opinion and standpoint on the medical decision. According to an exploratory study done by the Journal of Adolescent Health, 96 percent of chronically ill patients and 88 percent of healthy teens would want to have end of life discussions if they were very ill. This shows that most adolescents are inclined to fully understand their medical state and are willing to approach their medical decisions positively (Lyons 1).

Although the Informed Consent Law requires adolescents to be over 18 years old to make a medical decision which applies to adolescent end of life medical decisions, there are still many ethical values that must be taken into consideration in order to fully agree on allowing or declining an adolescent the ability to have a say in their medical arrangement (Coleman 787-792). The ethical issues raised in this type of scenario are adolescent autonomy, responsibility, and the doctor caring for the adolescent’s voice in the decision. All stakeholders’ different viewpoints in this decision, such as the doctor, adolescent patient, and the parents, will be evaluated according to the values and their opinions or views will be presented. The factual information will be taken into consideration when discussing the three important ethical values. If society is able to change the way that doctors and other people look at medical decision making, especially with adolescents, then there is a greater possibility that adolescents will gain the legal right and full authority to their end of life medical decision.

 

Autonomy

When adolescents are faced with an important medical decision towards the end of their life, doctors and parents are challenged with the option of whether to include an adolescent in the decision making process or not. Currently, people under the age of 18 are not considered legally competent to make most medical decisions for themselves. Autonomy, the capability of a person to make his or her own decisions, is limited as an adolescent. Their autonomy can still be respected through other ways of participation in the decision making process. Some reasons why an adolescent’s autonomy should be respected are because they are competent and able to fully understand the options in their medical decision, they are physically and mentally mature enough to provide informed consent, or giving permission or consent to a medical decision, and they are aware of the risks and benefits of different options.

One influential factor that must be abided by in order for an adolescent to understand their medical state is the amount of information that parents and doctors provided to the patient. If a doctor feels that, through his relationship with the patient, that the patient is capable of receiving the complete information about their medical treatment, then the patient should also be competent and knowledgeable enough to make their own medical decision. Often younger children see their doctors and parents as authoritative figures, therefore they feel that they have to agree with what their parents and doctors decide for them. But, as children get older and mature into adolescents they are more likely to question and discuss their opinions with their parents and doctors. For example, in Cassandra C.’s case, Cassandra felt comfortable questioning her treatment and wanted to know other options which shows that she was attentive about her cancer, but was also willing and eager to get some form of treatment to help her get better. Hence, adolescents may be physically and mentally mature enough to not only acknowledge but also to provide differing opinions and consent to their treatment plan. As said previously, the doctor-patient relationship is crucial in deciding how an adolescent will be involved in the medical decision making process. If a patient is well informed by their doctor then they should be able to understand the risks and benefits of their options. Therefore they should be included in the decision making process.

Another illustration of these ideas can be seen through the decisions of  Liz L., a 16 year old diagnosed with Leukemia, who had a great relationship with her doctors and parents whom shared all medical information with her throughout the entire process. Her doctors and her parents made a great effort to inform Liz about her medical care in both a direct and professional way but also a way that was easier for her to understand. This aided Liz in becoming able and informed to make decisions with her parents. One of those decisions included the effects of the chemotherapy drugs on her fertility. A fertility specialist informed Liz of the options she had and in the end Liz was given full autonomy and decided to go through with her chemo which left her with the chance of not being able to have children in the future. Another decision Liz’s doctor’s left up to her was deciding whether to inject herself twice a day, or let her parents, with a blood thinner and she decided that she felt comfortable doing it on her own. Liz and her doctors were able to create a relationship where in some cases she was given full decision making power, but in others her doctors felt it was up to her parents and them to decide her best interests.

Although any medical decision is tough, end of life decisions are significantly different than more simple and other medical decisions and this can affect a person’s decision making skills. In this case, since the person is in an end of life situation, they often become more mature when given decision making capability because they know the importance of the decision. For this reason, autonomy of an adolescent with an end of life decision should be respected. On the other hand, doctors may deem an adolescent as capable and competent to have autonomy in a medical decision in certain situations such as treatment for sexually transmitted diseases and seeking alcohol or drug abuse help. But in any other end-of-life medical decision this is not legal and some adolescents may not be mentally and physically able. State legislations do not allow a minor (under the age of 18), under most circumstances, to make medical decisions for themselves because minors are deemed incompetent decision makers based on their age and development. This category includes adolescent’s, thereby limiting their autonomy in end of life decision making or any medical decision making at all. This law is mainly in place to keep minors, including adolescents from making bad decisions.

Often adolescents or children are mentally unstable when dealing with heavy information like the end of life. This can affect the decision making capability of the patient, therefore they shouldn’t be allowed to have autonomy in this situation. As previously said, the prefrontal cortex of an adolescent’s brain is not fully developed which doesn’t give them full decision making capability. Due to this, their ability to weigh consequences and think before they act is limited. Since, we are unable to measure brain development it is hard to create a distinct cut off for when someone’s prefrontal cortex and other brain areas are developed and then competent enough to make an end of life decision.

Not only adolescents, but also adults and children struggle with autonomy and their opinion in a medical situation. It depends on the doctor’s relationship with the patient and how much they think that the patient can be involved in the decision making process. Autonomy for an adolescent having their own say in their own medical decisions at the end of life is challenging because it deals with what is legal versus what may be ethical.

 

Responsibility

Adolescents have many responsibilities in their lives, such as chores, education, sports, family, social lives, and relationships. There are also other types of responsibilities such as decision making and future planning which can be found in the medical world for people over the age of 18. Doctors and parents wonder if placing a large responsibility on an adolescent at the end of life is a good idea. On one hand, decision making pathways for an everyday decision like deciding to study for a test and to pass it, look similar to a medical end of life decision. Both decisions may positively and negatively impact the person in some way and the person went through the same thinking and questioning process in both decisions, making their final decision based on some factor. The responsibility of making either of these decisions will in some way impact the person, which is important when they are given the decision making ability. The responsibility of having to make a decision is evident in adolescent decision making at the end of life, where the doctors and parents must decide if the adolescent is responsible or if they should have this responsibility. If adolescents are able to make many thousand decisions a day and are able to weigh the outcomes and information to make a decision, then they are responsible enough to make a medical decision about themselves. Doctors should find that adolescents are responsible and capable of making a medical decision through their relationship with the patient. When a doctor first meets his or her adolescent patient and begins to get to know them, the doctor will be able to get a sense for the type of person they are and the traits they possess. Although this seems like a hard way to directly know if the patient is responsible and mature, it is one of the first indicators.

Adolescents are also capable of making other decisions outside of the medical fields that are high stakes and can affect themselves and those around them. Some of these high impact decisions include joining the military at age 17 and choosing to leave school at age 16. Responsibility is necessary for both of these decisions, so if an adolescent is capable to make these other high stakes decisions, then why aren’t they able to make end of life decisions about their own health care.

Although previous responsibilities make adolescent seem responsible to be involved in an end of life medical decision, there is a concrete difference between a low impact decision like choosing to do your homework and a high impact decision like choosing to follow through with chemotherapy, where the stakes and outcomes of the decision vary significantly. Adolescents should be allowed to have the smaller responsibility to choose to do many things in their lives every day, but they should not be placed with the burden of a life or death decision. Making an end of life decision can have very large consequences that can affect many adolescents who don’t have full decision making capacity to begin with and as a result they feel the pressure and burden of having to make a significant medical decision. A doctor is able to decide whether they believe the adolescent patient has the responsibility to be involved in the decision making process. This can only be decided if the doctor has a strong relationship with the patient and sees that he/she is compelled and mature enough to receive this responsibility.

 

Caring and the Three Stakeholders

The doctor, adolescent patient, and parents all care for each other and want to protect the patient from the reality of the end of life, but they should all also care about giving each other a voice and opinion about the situation. A medical decision can be impacted by how it affects a family and friends. In addition, the doctor has a large role because he/she is responsible for making sure they personally know their patient and how a decision can impact the patient positively and negatively. In this type of situation at the end of life, emotional treatment is as important as medical treatment. It is not just about the best treatments but also how information is conveyed to the adolescent, the support the patient receives and other factors. For Liz L., although chemotherapy and her cancer were the main focus, other activity choices such as going for a run, taking a nap, or doing homework were respected by her parents and doctors. This resulted in a strong relationship with her doctors and parents because she knew they cared for her and she trusted them to allow her to make some decisions about daily life on her own. A doctor must care for his patient in order to give him everything he may need in this process (information, opinions, etc.) which allows the doctor to care for the patient and include him in the decision making process. In order for the doctor to care for the patient they must create a personal relationship and bond where the doctor is able to know the patient’s feelings and opinions. Without the caring of the doctor, the patient’s voice may never be heard and their autonomy would not be respected.

Although a doctor patient relationship is important, the parents relationship and involvement in this decision making process are crucial. Generally parents care for the adolescent in two ways, caring for an adolescent by assisting them in decision making and therefore minimizing the harm that could come to the adolescent patient and caring for their own best interests therefore not wanting to possibly face the loss of their own child. Generally parents don’t enjoy seeing their own child suffer so they explore options that could stop the suffering of the adolescent. One of the most popular decisions, discovered from a study by the Journal of Clinical Oncology, is to stop treatment and allow the patient/child to die naturally without treatment and without performing physician-assisted suicide. The result of these decisions is a patient/adolescent/child of the parent who is not suffering. The parent showed that they cared for the adolescents well-being and their quality of life. Although many parents feel that stopping the suffering of their child will mean that they care for them, some think that caring for their child would be to continue treatment, even in suffering, in order for the family to not face a huge loss. Either of these options may not coincide with the adolescents wishes which could mean that the parent did not care for how the adolescent wished to live and what they wanted to do at the end of their life. Parents and doctors care for their patient or child throughout the entire decision making process and medical situation. In order for the adolescent to have autonomy in his own medical decision, the doctor and parents must care for the adolescent and trust the patients opinions, if they have the patient’s best interests. The care from doctor and parent relationships influence a patient’s involvement in the end of life decision making process.

 

Conclusion

Cassandra C. and Liz’s case’s are both examples where the doctor and parents worked to incorporate the adolescent’s opinions into the medical end of life decision making process. Although the outcomes were significantly different, the ethical values were raised and evaluated through the doctor, parents and patient stakeholders. Autonomy, responsibility, caring and the doctor patient relationship are all main ethical issues that arise in the topic of adolescent autonomy but they are seen through different lenses, all the stakeholders, and this is why adolescent decision making at the end of life is such a complicated issue.

Although adolescents are not legally allowed to make medical decisions for themselves, in most cases, adolescents should be involved in medical decisions at the end of life for themselves if the physician feels they are developmentally and physically competent and informed about their medical condition. Since adolescents have the resources to be informed about their medical condition and they are willing to question and discuss their treatment, they should be competent to make a medical decision at the end of life. Of course this would have to be taken on a case by case evaluation because every person is different in how they develop and mature which would make them competent to make an important medical decision at the end of life. Currently there is no way to measure brain development, especially the prefrontal cortex, so this is why it is extremely important to build a strong doctor patient relationship so that the doctor and other medical professionals can evaluate the adolescent. Some ways a doctor can create this relationship is to talk directly to the patient and not just to the parents, not talk in 3rd person about the patient, make direct eye contact with the patient and to talk in a professional but understandable way about all medical information. It is important to understand that this research is still in development and that is why there is such a large slippery slope when discussing who gets autonomy in medical decisions. Deciding whether a person is competent enough to make a medical decision is not only found in adolescents, but also throughout the entire human lifespan with many different types of people.

By Elyse DiCesare

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