Autonomy: Child vs. Parent

There is a common understanding that adult patients have the autonomy to make their own decisions about the healthcare services they receive after garnering the proper guidance about risk, benefits, and alternatives. Autonomy, however, comes into question when dealing with pediatric patients. Pediatric cases are unique because decisions about their care involve not only the patient, but their parents. Cases become even more complicated when considering the range of ages that are categorized as pediatric. As young children grow into adolescence, they develop a sense of self and the ability to receive and process information, specifically information about their health, which gives them a voice in the decision-making process. Ultimately, an ethical issue arises when there is a disagreement about treatments between either the healthcare provider and the family, or between the child and their parents. A child should be allowed to make final decisions about their own health care treatment with the advisement of the physician and parents, if the child is an adolescent with the emotional, mental, and physical capacity to make those decisions.

In the case of the 16-year-old, Jordan, who was diagnosed with cystic fibrosis during a newborn screening, an ethical dilemma between autonomy and beneficence arises. In this scenario, Jordan’s cystic fibrosis has advanced, and his physician is recommending he be evaluated for a lung transplant. After receiving all the information about the process leading up to the procedure, the procedure itself, and what life would be like post-operatively, a disagreement is reached about the steps that should be taken if Jordan’s state of health worsens while awaiting the transplant. Jordan and his family are faced with the choice of receiving cardiopulmonary resuscitation or being intubated if his condition becomes worse, however, Jordan doesn’t like the idea of being intubated based on past events. On the other hand, his father and physician would like to do anything possible to save and prolong his life for as long as they can.

Every clinician wishes to do whatever they can to save a patient, but in the end, they must take the patient’s wishes into consideration; though, this case also requires considering the parents’ wishes. It is even more important to note, however, that Jordan is 16 years old, and that he has some mental & emotional capacity to take a stance on whether or not he should be intubated if needed. “It has long been known from laboratory experiments that youth as young as 14 can understand medical information and come to reasoned decisions resembling those of young adults” (Diekema, 2011). Having dealt with cystic fibrosis his entire life, it can be argued that Jordan has experienced many instances in which he has had to endure uncomfortable or invasive procedures, which validate his reasoning for not wanting certain interventions. Although, a child who declines life-saving interventions is met with much resistance from parents. “Parental distress presents a challenge for good, informed decision-making” (Katz et al., 2016). While parents have their child’s best interest at heart, their judgement can become clouded by the idea of keeping their child alive at all costs. Meanwhile, the child is thinking about how further life-sustaining measures will impact their life in a negative way.

On the other hand, others would argue that an adolescent’s judgement is also clouded by emotions. Teenagers may not have the ability to make well-informed, rational decisions in high level stress situations, such as those that involve medical decisions (Sawyer & Rosenberg, 2020). Teens’ decisions are also more susceptible to being influenced by others such as friends or family (Sawyer & Rosenberg, 2020). For example, a child may choose against a treatment that may cause some disfigurement to avoid any ill-perceptions from peers. When it comes to family members, though, a teen may feel the need to make a decision they are not fully comfortable with because they want to make them happy; in reality it’s not what they truly desire. “Adolescents might consider what decision a “good” child, “brave” patient, or independent” actor would make, thereby infusing perception of others’ opinions into their medical decision” (Sawyer & Rosenberg, 2020). In Jordan’s case, his palliative care team was consulted to weigh the pros and cons and to talk to Jordan and his family about their feelings. As a result, Jordan decided with his parents to proceed with any intervention that would prolong his life just to make his mother happy, but it wasn’t what he really wanted. This case causes one to consider the many people and factors that can influence a teen’s decision, and to make sure they receive proper counseling to make decisions. An article states, “…clinicians should seek to understand the extent to which an adolescent is weighing others’ opinions in making a decision and if this level of consideration promotes the adolescent’s health and healthy relationships” (Sawyer & Rosenberg, 2020).

All in all, adolescents understand the implications their decisions have on their lives and lives of those around them. With the proper guidance and counseling from their healthcare provider, teenagers can have the autonomy to make well-informed decisions about their care. While it is important to take their parents’ opinions into consideration, the choice of treatment should ultimately lie with the child.

References

Diekema. (2011). Adolescent refusal of lifesaving treatment: are we asking the rightquestions?Adolescent Medicine (Elk Grove Village, Ill.), 22(2), 213–228.

Katz, A. L., Webb, S. A., Macauley, R. C., Mercurio, M. R., Moon, M. R., Okun, A. L., Opel, D. J., & Statter, M. B. (2016). Informed consent in decision-making in pediatric practice. Pediatrics, 138(2). https://doi.org/10.1542/peds.2016-1485 

Sawyer, K., & Rosenberg, A. R. (2020). How should adolescent health decision-making authority be shared? AMA Journal of Ethics, 22(5), 372–379. https://doi.org/10.1001/amajethics.2020.372