Pediatric consent

Agents, interests, and dilemmas

Max seems determined to eliminate his continuing suffering at the end of his life. His interests lie with stopping futile treatment and taking control of death on his own terms. Max’s parents’ interests lie in preserving his life despite the knowledge that improvement is highly unlikely. The PICU Medical Team in this case includes nurses, physicians, oncology specialists, child life specialists, and social workers. The interest of the team is to holistically support Max and his family in their health care decision-making without coercion. Their goal is to achieve consensus within the family and to prevent Max from further suffering if possible. The medical institution has interests to ensure that standards and policies are followed, negative attention is avoided with prompt conflict resolution, and all clients are satisfied with the care they receive. There are multiple dilemmas in this particular case such as futile care, pediatric advance directives, consent/dissent to treatment by a competent minor, and decision-making capacity.

Analysis of position 1

The first position rests with the parents’ opposition to Max’s choice to discontinue medical treatment and to forfeit extraordinary resuscitative efforts due to the inevitability of his health decline. This is based on the notion that as Max is a minor and has not reached the legal age of majority, his parents have the right to pursue any treatment they feel may have any chance of prolonging his life (in the US, a minor cannot consent if they are under 18). It is supported by the general notion that parents are the most capable people to act in a minor’s best interest because they are more competent than adolescents to make medical decisions.

Beauchamp and Childress ¹ have defined the principle of respect for autonomy as the norm that emphasizes freedom from both controlling interference by others and from limitations, such as inadequate understanding, that might prevent meaningful choice. Though it may seem that the parental decision in this case denies Max’s autonomous choice in his treatment, parental autonomy legally supersedes such choices when a minor (under age 18) is involved. That is, until they reach the legal age, children can partner in decision making but their autonomy has yet to displace the locus of control from their parents. Max has been identified as a mature adolescent with a chronic illness, experience with treatments, and knowledge to make informed medical decisions. Even with these facts, his parents are elevated to the position of seizing his short-term autonomy and denying his decision-making capacity.

According to Whitney et al., ² the family has a strong claim to decisional priority over the child and the physician, when the chance of cure is slight, and there is a reasonable choice between aggressive therapy and palliative care. In this case, the parents take this decisional priority, and it is their duty to help Max make choices that are as informed as possible in order to value his autonomy. Unguru et al. ³ have stated that children’s vulnerability relates directly to their limited decision-making capacity and their parents’ interests must lie in protecting their best interests as they see fit. Max dissents to the escalation of care, but it could be argued that children are less reflective about choices while their parents are able to evaluate long-term outcomes. Because it is difficult for children to contemplate the future at the expense of the discomforts in the present, parents “shoulder all social, emotional, and legal obligations.” ⁴ Therefore, it can be concluded that ethical obligations defer to parental autonomy and decision making. Minors do not have the legal right to refuse treatment approved by their parents unless courts intervene, and therefore, it remains the responsibility of the parents to garner consent and explore reasons for dissent. ⁵ In a study by Lee et al., ⁶ it was argued that the model of parental permission and pediatric consent supported by the American Academy of Pediatrics (AAP) was less sound in clinical work. They favored a model of “constrained parental autonomy,” which gave children no decision-making authority but was designed to protect the child without them being “treated solely as a means” and require parents to provide their children with “goods, skills, liberties, and opportunities necessary to become autonomous adults” (p. 727).

Yet, it may be suggested that respect for children as persons requires respect for their well-being. This concept can be described as beneficence, the moral obligation to protect others against harms (nonmaleficence). ¹ The debilitating sequelae of chemotherapy, radiation, and dialysis treatments are performed with the intent of prolongation of life even though they inflict harm in the process. Any act that purposely reduces an individual’s survival can be seen as inflicting harm. The parental argument to continue these treatments and escalate the intensity of care does violate nonmaleficence but only for the hope of beneficence. The treatments that Max considers extraordinary are, in his parents’ opinion, customary options for aggressive cancer treatment that will prolong their time together. According to Beauchamp and Childress, ¹ “harmful actions that involve justifiable setbacks to another’s interests are, of course, not wrong.” Thus, choosing life over the side effects of treatment could be perceived as an easier option for these parents. Therefore, their intent appears to guide this resolution to overcome their child’s dissent to therapy.

Analysis of position 2

Max gives the health care team consent for palliative care and a DNR order to prevent escalation of treatments once his body starts to deteriorate. This second position relies on the fact that Max is a competent minor who fits the criteria established by the AAP policy statement. This criterion guides health care providers to honor informed consent directly from the minor in order to respect their decision-making capacity. ⁷ Since there is evidence that Max has sufficient knowledge, maturity, and understanding to dissent to further treatment, his decision should be taken seriously and be given priority.

Autonomy is the most important aspect of this argument because the conflict in decision-making capacity lies in whether Max meets the criteria for having his consent honored. Under usual circumstances, the principle of autonomy requires the acceptance of the free and informed choices of competent patients. Subsequently, it could be argued that Max’s health care experience enabled him to have a mature capacity beyond his age to be independent in his medical choices. Though legally able to provide informed consent for Max, his parents hold an unreasonable expectation of what further treatment will do and therefore may be emotionally distracted and unable to provide competent judgment and decision-making authority.

The debate over the role of pediatric consent and dissent in health care has yet to be settled since the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research created the concept in the 1970s. However, the AAP Committee on Bioethics states that health care providers, who recognize the importance of consent in decision-making, empower the minor’s respect for autonomy and establish the fullest sense of their capacity. ⁸ Max’s fervent request against further escalation of treatment can be deemed ethically binding. Furthermore, most states apply the common law doctrine of “mature minors.” This concept allows an adolescent to provide informed consent for medical decisions if they are able to understand and appreciate the extent and consequences, risks and benefits, and nature and context of the situation. Indeed, as Zawistowski and Frader ⁴ found, there have been cases where discontinuance of care for dying adolescents was upheld in court using best interest and substituted judgment with emphasis on the wishes of the minor involved. Hence, even though most parents attempt to provide for the best interests of their children, end-of-life decisions present a difficult challenge to parents’ ability to ascertain what is really in the best interest of the adolescent. End-of-life decision-making should therefore default to the competent adolescent because their parents are unable to separate their own interest or those of the family from the needs of the patient.

The principles of beneficence and nonmaleficence further support the argument against the desires of Max’s parents. The health care team has clearly established that there is no reasonable hope of benefit from continuation or escalation of current care, therefore “any expense, pain, or other inconvenience is excessive, and it is probably obligatory not to treat” (p. 124). ¹ The proposed treatments actually cause harm without any benefit to the patient who will ultimately still die despite the therapy. Max has previous experience with aggressive anticancer treatment and therefore he is the best authority on what causes suffering and what is bearable. Whitney et al. ² have found that sometimes families are unwilling to accept end-of-life care because it acknowledges the death of their loved one but it also submits that child to a “quixotic quest for cure” that leads to “a long nightmare of dying.” Following this argument, the only way to ensure beneficence when death is inevitable is to provide comfort and respect for the dying, which Max self-advocates in his wish for palliative care. Similarly, a DNR order will not cause harm because the natural progression of his illness will have caused his death, whereas there may be some suffering inflicted in the process of resuscitative efforts. Though Max’s parents feel they must fight to prolong his life by any means, the futility of this fight violates their intention of beneficence. Application of beneficence and nonmaleficence to treatment strategies overwhelmingly supports palliative care as opposed to futile treatment. ²