Ethics in Pediatric Care

Pediatric ethics is the branch of bioethics that analyzes moral aspects of decisions made relating to the healthcare of children. In general terms, the autonomy -driven framework of adult medical ethics is replaced by a beneficent paternalism (or parentalism) in pediatrics. Pediatric ethics is distinctive because the pediatric clinician has an independent fiduciary obligation to act in a younger child's best interest that takes moral precedence over the wishes of the child's parent(s). For older children, the concept of assent suggests that the voice of the patient must be heard. These factors create the possibility of conflict among child, parent, and clinician. The approach to the ethical issues that arise in pediatric practice must include respect for parental responsibility and authority balanced with a child's developing capacity and autonomy. Heterogeneity of social, cultural, and religious views about the role of children adds complexity.

Assent and Parental Permission

The doctrine of informed consent has limited direct application to children and adolescents who lack decisional capacity. The capacity for informed decision-making in healthcare involves the ability to understand and communicate, to reason and deliberate, and to analyze conflicting elements of a decision using a set of personal values. The age at which a competent patient may legally exercise voluntary and informed consent for medical care varies from state to state and may be limited to specific conditions (sexually transmitted infections, family planning, drug or alcohol abuse).

In contrast to decisions about one's own care, a parent's right to direct a child's medical care is more limited. For this reason, the term parental consent is misleading. The concept of parental permission (rather than consent) reflects a surrogate or proxy decision made by a parent on behalf of a child. It is constrained both by the child's best interest and the independent obligation of clinicians to act in the child's best interest, even if this places them in conflict with a parent. In any given instance, the decision of what is or is not in a child's best interest may be difficult, especially given the diverse views of acceptable child rearing and child welfare. Parents are (and should be) granted wide discretion in raising their children. In cases involving a substantial risk of harm, the moral focus should be on avoiding or preventing harm to the child, not on a parental right to decide. While the term best interests may be too high of a threshold requirement, a minimum standard of basic interests is ethically obligatory.

Respect for children must account for both a child's vulnerability and developing capacity. This respect encompasses both the protective role of parental permission and the developmental role of child assent (the child's affirmative agreement). Understanding the concept of assent is one of the major conceptual challenges in pediatric ethics. The dissent (or disagreement) of a child is the opposite of assent and is also morally relevant. Pediatric ethics requires clinicians and parents to override a child's dissent when a proposed intervention is essential to the child's welfare. Otherwise, assent should be solicited and dissent honored . In seeking younger children's assent, a clinician should help them understand their condition, tell them what they can expect, assess their understanding and whether they feel pressured to assent, and solicit their willingness to participate. All efforts must be made to delineate situations in which the test or procedure will be done regardless of the child's assent/dissent, and in such cases the charade of soliciting assent should be avoided. There is an important distinction between soliciting assent and respectfully informing a child that a test or procedure will take place regardless of the child's decision. Optimally, an educational process can transpire (if time allows) to gain the trust and assent of the child-patient. When this cannot occur, pediatric ethics requires that clinicians apologize to a child for acting to override dissent.

Older children or adolescents may have the cognitive and emotional capacity to participate fully in healthcare decisions. If so, the adolescent should be provided with the same information given to an adult patient. In such situations the patient may be able to provide informed consent ethically but not legally. The adolescent's parent(s) remain in a guiding and protective role. The process of communication and negotiation will be more complex should disagreement arise between the parent and adolescent. Pediatricians can be effective intercessors when these situations arise, making use of communication skills in a respectful way that uses an ethical framework as recently described by Sisk et al.

Treatment of Critically Ill Children

Infants, children, and adolescents who become critically ill may recover fully, may die, or may survive with new or worsened limitations of function. Uncertainty about outcomes can make planning goals of care difficult, or if misunderstandings between patient, families, and medical staff occur, may drive conflict over treatment proposals. Ethical issues that arise during critical illness include balancing benefits, burdens, and harms of therapy in the face of uncertainty; maintaining a helpful degree of transparency and communication about medical standards of care at an institution; understanding and respecting religious and cultural differences that impact requests for or refusal of treatments; defining limits of therapy based on assessments of medical futility; recognizing the moral equivalence of not starting an ineffective treatment and stopping (although the 2 acts may seem very different to families and providers); and controversies such as withholding medically administered nutrition and hydration.

Transitioning the Goals of Care

Most acutely ill children who die in an intensive care unit do so after a decision has been made to forgo or withdraw life-sustaining medical treatment (LSMT) , and the same may apply in the chronically ill population. LSMT is justified when the anticipated benefit outweighs the burdens to the patient; the availability of technology does not in and of itself obligate its use. Decisions to use, limit, or withdraw LSMT should be made after careful consideration of all pertinent factors recognizable by both family and medical staff, including medical likelihood of particular outcomes, burdens on the patient and family, religious and cultural decision-making frameworks, and input by the patient when possible. Although fear of legal repercussions may sometimes drive treatment and medical advice, ultimately decisions should be based on what is thought to be best for the patient rather than based on fears of litigation.

The concept of futility has been used to support unilateral forgoing of LSMT against the wishes of patients and families by holding that clinicians should not provide futile (or useless) interventions. If medical futility is defined narrowly as the impossibility of achieving a desired physiologic outcome, forgoing a particular intervention is ethically justified. However, this approach may not adequately engage professionals and families in understanding facts and values that might allow the same therapy to reach other goals, and may leave medical and family stakeholders in permanent conflict. Guidance from critical care groups recommend restricting use of the word futility to situations of strict physiologic futility, and instead use process guidelines to evaluate and manage situations of potentially inappropriate treatment . If agreement cannot be reached through clear and compassionate communication efforts, further input should be sought from an ethics consultant or committee.

Communication about life-threatening or life-altering illness is challenging and requires skills learned through both modeling and practice. These skills include choosing a setting conducive to what may become one or more long conversations; listening carefully to children's and families’ hopes, fears, understanding, and expectations; explaining medical information and uncertainties simply and clearly without complicated terms and concepts; conveying concern and openness to discussion; and being willing to share the burdens of decision-making with families by giving clear recommendations. Discussing difficult topics with children requires an understanding of child development and can be aided by professionals such as child psychologists or child life specialists. Such conversations and their outcomes have a major impact on the future care of the patient, on families, and on medical staff. For this reason, ongoing evaluation of goals and communication about them is needed with families and within complex medical teams as the course of the illness unfolds.

Experts recognize that good medical care involves providing for communication, symptom management, and a range of supportive services from the onset of acute illness. In this way, if an illness proves to be life-limiting despite aggressive therapies, the elements of palliative care are already in place. This concept has had difficulty gaining traction, especially in critical care settings, because of the mistaken conflation of broadly defined palliative measures with hospice care. Palliative care interventions focus on the relief of symptoms and conditions that may detract from quality of life regardless of the impact on a child's underlying disease process, and as such are important whether care is focused on cure or on transitioning to end-of-life care (see Chapter 7 ). Some interventions regarded as life-sustaining, such as chemotherapy, may be ethically acceptable in the end-of-life setting if their use decreases pain and suffering rather than only prolonging dying.

Withholding and Withdrawing Life-Sustaining Treatment

Limitation of interventions or withdrawal of existing therapies are ethically acceptable if they are congruent with a plan of care focused on comfort and improved quality at the end of life rather than cure. The prevailing view in Western, traditional medical ethics is that there is no moral distinction between withholding or withdrawing interventions that are not medically indicated. Uncertainty in predicting a child's response to treatment may drive the initiation and continuation of interventions that are subsequently determined to be no longer supportive of shared goals of care. It is necessary to evaluate continually the results of these treatments and the evolution of the illness to recognize whether such interventions continue to be the best medical and moral choices. Maintaining the focus on the child rather than on the interests of parents or medical staff will help guide decision-making.

The decision about whether to attempt cardiopulmonary resuscitation (CPR) may become an issue to discuss with parents of children living with life-threatening or terminal conditions. All elements of end-of-life care approaches, including resuscitation status, should be supportive of agreed-on goals of care. It is imperative that decisions and plans are effectively communicated to all caregivers in order to avoid denying medically effective interventions and measures to ensure comfort. Orders about resuscitation status should clarify the plan regarding intubation and mechanical ventilation, the use of cardiac medications, chest compressions, and cardioversion. Because goals of care may change over time, a medical order regarding resuscitation is not irrevocable. Clinicians may assume that the absence of a do-not-attempt-resuscitation (DNAR) order obligates them to perform a prolonged resuscitation. This action may not be ethically supportable if resuscitative efforts will not achieve the desired physiologic end-point. In all cases, treatments should be tailored to the child's clinical condition, balancing benefits and burdens to the patient. Resuscitation should not be performed solely to mollify parental distress at the tragic time of the loss of their child.

Advance Directives

An advance directive is a mechanism that allows patients and/or appropriate surrogates to designate the desired medical interventions under applicable circumstances. Discussion and clarification of resuscitation status should be included in advance care planning, and for children attending school despite advanced illness, may need to be addressed in that setting. Decisions regarding resuscitation status in the out-of-hospital setting can be an important component of providing comprehensive care.

The 1991 federal Patient Self-Determination Act requires that healthcare institutions ask adult (>18 yr) patients whether they have completed an advance directive and, if not, inform them of their right to do so. Few states support creation of broad advance directives for minors because advance directives are traditionally created for persons with legal decision-making capacity. Some have moved in this direction, however, because it is recognized that minors may be capable of participating in decision-making, especially if they have experienced chronic disease. Most states have approved the implementation of prehospital or portable DNAR orders , through which adults may indicate their desire not to be resuscitated by emergency personnel. On a state-by-state basis, portable orders regarding resuscitation status may also apply to children. If DNAR orders exist for an infant or a child, it is important to communicate effectively about their intent among all potential caregivers, because nonmedical stakeholders such as teachers or sitters may not want to be in the position of interpreting or honoring them. Some institutions have established local policies and procedures by which an appropriately executed, outpatient DNAR order can be honored on a child's arrival in the emergency department. Key features may include a standardized document format, review by an attending physician, ongoing education, and involvement of a pediatric palliative medicine service.

In cases involving prenatal diagnosis of a lethal or significantly burdensome anomaly, parents may choose to carry their fetus/unborn child to term in order to cherish a short time with the infant after birth, but they do not feel that resuscitation or certain other aggressive measures would support their well-considered goals of care. In this setting, a birth plan explaining the reasons for each choice can be developed by the parents and medical staff before delivery and shared with involved medical staff. This approach gives staff a chance to find other caregivers if they are uncomfortable with the approach, without abandoning the care of the child. If, after evaluation at birth, the infant's condition is as had been expected, honoring the requested plan is ethically supportable and should be done in a way that optimizes comfort of the infant and family.

Many states use Physician Orders for Life-Sustaining Treatment or Medical Orders for Life-Sustaining Treatment approaches to communicating a patient or surrogates wishes regarding advance care planning. Other tools, such as Five Wishes , have been adapted for use by adolescent patients to elicit values and desires. It is important for pediatricians to learn which pathways for communicating goals of care are available in their own states.

Artificial Hydration and Nutrition

Issues surrounding withholding or withdrawing artificial hydration and nutrition are controversial, and interpretations are affected by parental, religious, and medical beliefs. Any adult or child who is fully dependent on the care of others will die as a result of not receiving hydration and nutrition. Case law has supported the withholding of artificially administered nutrition and hydration in the setting of adult vegetative or permanently unconscious patients who can be shown to have previously expressed a wish not to be maintained in such a state. This requires a valid advance directive, or for a surrogate decision maker to speak on behalf of the patient's known wishes. Because infants and many children have not reached a developmental stage in which such discussions would have been possible, decisions about stopping artificially administered nutrition and hydration as a limitation of treatment are more problematic. These decisions should be based on what families and caregivers decide best support comfort. In the child who is imminently dying, unaware of hunger, does not tolerate enteral feedings, and in whom family and staff agree that IV nutrition and hydration only prolong the dying process, it may be ethically supportable to withhold or withdraw these treatments based on a benefit-burden analysis.

The Doctrine of Double Effect

Treatment decisions at the end of life may include limitations of certain LSMT or may involve the use of analgesic or sedative medications that some fear may shorten life, thereby causing death. The doctrine of double effect ( DDE ) holds that an action with both good and bad effects is morally justifiable if the good effect is the only one intended, and the bad effect is foreseen and accepted, but not desired. In pediatrics, DDE is most commonly applied in end-of-life cases, when upward titration of medication (opiates) necessary to relieve pain, anxiety, or air hunger can be expected to result in a degree of respiratory depression. In such cases, meeting a provider's obligation to relieve suffering is the intended effect, and this obligation to the patient outweighs the acknowledged but unavoidable side effect. Choosing medications that adequately relieve symptoms with minimal adverse effects would be ethically preferable, but the obligation to provide comfort at the end of life outweighs the foreseeable occurrence of unavoidable side effects. Hastening death as a primary intention is not considered to be morally acceptable.

Providing pain medication guided by the DDE should not be confused with active euthanasia. The distinction is clear:

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In active euthanasia , causing death is chosen as a means of relieving the symptoms that cause suffering.
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Under DDE, adequate management of pain, anxiety, or air hunger is recognized as an obligation to dying patients, and is provided by careful titration of medications in response to symptoms. If death occurs sooner as a result, this is accepted.

In both cases the patient dies, and in both cases suffering ends, but immediate death is the intended consequence only in the case of euthanasia. Codes of ethics and legislation in many states support the obligation to provide pain and symptom relief at the end of life, even if this requires increasing doses of medication.

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