217 Ethical Controversies in Pediatric Critical Care
Decision Making in the Pediatric Intensive Care Unit
Role Of Parents And Physicians
Who should make the final decision about treatment for a child in the PICU? In the United States, the clear consensus in the fields of ethics and the law is that a competent adult patient has the right to refuse all forms of medical therapy, including life-sustaining treatment, even if it is certain that such a refusal will hasten death. A similar moral and legal consensus holds that parents have the authority to determine the best interests of their children and make decisions in accord with their own values. However, pediatric healthcare providers also have legal and ethical duties to their patients, independent of parental desires or proxy consent.1–3
How can one objectively assess whether a decision is within the range of acceptable ethical choices for a child? More than 20 years ago, a widely respected decision-making framework for children in the PICU context was published by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.4 The commission proposed five considerations for determining a child’s “best interests” and therefore the appropriate approach when weighing different treatment options: (1) the amount of suffering and the potential for relief, (2) the severity of dysfunction and the potential for restoration of function, (3) the expected duration of life, (4) the potential for personal satisfaction and enjoyment of life, and (5) the possibility of developing a capacity for self-determination. The commission then advocated applying these criteria based on an assessment of the proposed treatment plan as clearly beneficial, ambiguous or uncertain, or futile. The commission concluded that in most circumstances, the child’s parents should be the final decision makers on all medical decisions (Table 217-1). The Committee on Bioethics of the American Academy of Pediatrics has similarly recommended great deference to patents’ informed decisions.5
TABLE 217-1 Decision Making in the Pediatric Intensive Care Unit
| Physician’s Assessment of Treatment Option | Parents Prefer to Accept Treatment | Parents Prefer to Forgo Treatment |
|---|---|---|
| Clearly beneficial | Provide treatment | Provide treatment (during review process) |
| Ambiguous/uncertain | Provide treatment | Forgo treatment |
| Futile | Provide treatment (unless provider prefers not to) | Forgo treatment |
The President’s Commission also concluded, reflecting the legal consensus in this area, that parental authority must occasionally be superseded by clinicians when it is determined that the parents’ decisions are at odds with the societal consensus about a child’s interests or when parents’ actions produce certain risk or harm to the child. If life-threatening choices are not involved, or if the risk of substantial harm is minimal, courts have generally respected the decisions of the parents, even though physicians may have disagreed strongly. In some states, parents are legally permitted to refuse standard immunizations for religious reasons.5 As the potential threat to the child increases, however, and as the benefits of treatment become more certain, actions to override parental choices are not only legally supportable but also mandatory in most jurisdictions. Numerous court opinions have upheld the notion, first pronounced in the 1944 Supreme court case of Prince v. Massachusetts, that a parent may make a martyr of himself because of religious convictions, “but he is not free to make a martyr of his child.”6
Need For Improved Communication
A growing body of research reveals that parents report problems related to optimal communication as one of the major deficiencies in the end-of-life care provided to their child. Consistently effective communication from one level of care and one set of providers to the next is a basic expectation, but one that is often not fully met.7 Meert and colleagues reported on the experience of the bereaved parents of 48 children cared for at 6 PICUs in the United States.8 These investigators found that the most common communication issue identified by parents was the physicians’ availability and attentiveness to their informational needs. More important than the actual outcome, recent data also suggest that many parents want more involvement in end-of-life planning, from discussions around the location of death to even consideration of a plan for extubation at home. These data suggest that the potential for strained communications is mitigated if clinicians provide timely clinical and prognostic information and support the family with a comfortable setting and continuous psychosocial support.
Seeking The Child’s Assent
The prevailing consensus is that patients should participate in treatment decisions to the extent of their decision-making capacity. The President’s Commission advocated this perspective when it noted, “Determining whether a patient lacks capacity to make a particular health care decision requires assessing the patient’s capability to understand information relevant to the decision, to communicate with care givers about it, and to reason about relevant alternatives against a background of reasonably stable personal values and life goals.”4 Restricting medical decision making only to patients who fulfill the legal definition of competency would infringe on the autonomy of many individuals with decisional capacity, such as adolescents.
Around the age of 7 years, children develop an increasing capacity to understand, process, and make decisions about their care. For children this age and older, it becomes increasingly important for clinicians to obtain the child’s assent whenever appropriate. As a matter of policy, the American Academy of Pediatrics has stated, “Patients should participate in decision-making commensurate with their development; they should provide assent to care whenever reasonable. Parents and physicians should not exclude children and adolescents from decision-making without persuasive reasons.”3
Determining Futility
Few issues have provoked as much controversy as the notion of futility. Who should determine when a situation is futile? A recent review of the futility debate noted that the debate about how to resolve cases in which patients and families demand interventions clinicians regard as futile has been in evolution over the past 20 years.9 The first generation was characterized by attempts by physicians to define futility in terms of certain clinical criteria. These attempts failed because they proposed limitations to care based on value judgments for which there is no consensus. The second generation was based on a procedural approach that empowered hospitals, through their ethics committees, to decide whether interventions demanded by families were futile. Many hospitals adopted such policies, and some states such as Texas incorporated this approach into legislation. This approach has also not succeeded because it gives hospitals authority to decide whether or not to accede to demands clinicians regard as unreasonable when any national consensus on what is a “beneficial treatment” remains under intense debate. Absent such a consensus, it appears that procedural mechanisms to resolve futility disputes inevitably confront the same insurmountable barriers as attempts to define futility.
The Society for Critical Care Medicine (SCCM) states that treatments should be defined as futile “only when they will not accomplish their intended goal.”10 Moreover, this official position on futility states:
Treatments that are extremely unlikely to be beneficial, are extremely costly, or are of uncertain benefit may be considered inappropriate and hence inadvisable, but should not be labeled futile. Futile treatments constitute a small fraction of medical care. Thus, employing the concept of futile care in decision-making will not primarily contribute to a reduction in resource use. Nonetheless, communities have a legitimate interest in allocating medical resources by limiting inadvisable treatments.10
Communities should seek to do so using a rationale that is explicit, equitable, and democratic; that does not disadvantage the disabled, poor, or uninsured; and that recognizes the diversity of individual values and goals. Policies to limit inadvisable treatment should have the following characteristics: (a) be disclosed in the public record; (b) reflect moral values acceptable to the community; (c) not be based exclusively on prognostic scoring systems; (d) articulate appellate mechanisms; and (e) be recognized by the courts.10
The Committee on Bioethics for the American Academy of Pediatrics has published guidelines articulating similar sentiments.2
Issues in End-of-Life Care
Optimal Palliative Care
For a critically ill child and their family, attention to all of their emotional, physical, and spiritual needs begins at the time of diagnosis, not at the end of life. The World Health Organization defines five essential elements of pediatric palliative care11:
