As in all of pediatric care, providing care near the end of life to pediatric patients is best done in a collaborative manner, with patients, parents, and other family members working with members of the clinical team to assure the highest quality of care for the patient. While in most cases medical care decisions can be made in a mutually agreeable manner, in some cases of care near the end of life, difficult questions, disagreements, or conflict can arise. In this chapter, we focus on several challenges that can arise in these difficult cases.
WHO HAS THE AUTHORITY TO PROVIDE CONSENT FOR TREATMENT AND MAKE MEDICAL DECISIONS?
As a general rule, children under the age of majority are governed by their parents or legal guardians, and the rights of parents include consenting to treatment and making medical decisions for the minors under their care. However, there are some limited exceptions to this rule. Many state laws contain exceptions for minors to make their own medical decisions, and there are also circumstances in which parental rights to refuse care are limited by state public policy (eg, no right of refusal of low-risk, life-saving treatments for a child due to a parent’s own religious reasons). Parents found by the courts to be abusive or neglectful may also lose the legal authority to make medical decisions for their children.
The general rule of parental authority has 3 exceptions that allow for minors to make their own medical decisions, the legal details of which vary state by state. First, a majority of (but not all) states grant full medical decision-making authority to emancipated minors (although the criteria for emancipation also differ across states, with, for example, some states requiring that a female patient have given birth to a child, whereas in other states having been pregnant is sufficient). Second, some states allow minors to consent to treatment for specific “carved-out” conditions and needs, including sexually transmitted infections, reproductive health care, and mental health care, without parental knowledge. Finally, in some states without consent statutes, courts have recognized a “mature minor” doctrine, which allows minors who have the maturity level to understand the risks and benefits of a treatment to consent to that treatment.
Until recently, courts held that although minors were sometimes able to refuse medical care, they could not refuse life-saving treatment. Courts in a few recent cases have held that minors who clearly understand the consequences of refusing treatment may do so even when the consequence is death. Although not every state allows minors to make these decisions, the values and perspectives of minor patients should nonetheless be discussed with the authorized decision maker and documented by the medical provider.
DOES THE AUTHORIZED PERSON HAVE CAPACITY?
Determining capacity to consent to treatment is a challenge faced in every domain of medicine, yet capacity determination ...