Ethics in Pediatric Care

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Chapter 3 Ethics in Pediatric Care

Pediatric ethics is a branch of bioethics that analyzes moral aspects of decisions made relating to the health care 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. Children are both vulnerable and resilient, and represent the future of our society.

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 health care 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 his or her welfare. Otherwise, assent should be solicited and dissent should be 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 their 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 fully participate in health care decisions. If so, the adolescent should be provided with the same information as would be given to an adult patient. In cases like this, 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 (see Adolescent Health Care).

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 (though the 2 acts may feel very different to families and providers); and controversies such as withholding medically administered nutrition and hydration.

Transitioning the Goals of Care

Most children who die in an intensive care unit (ICU) do so after a decision has been made to either limit or withdraw (forgo) life-sustaining medical treatment (LSMT), and the same may apply in the chronically ill population. LSMT is justified when the anticipated benefit of returning to or sustaining an acceptable quality of life 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, in general, medical advice and ultimate 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. When a medical intervention is defined narrowly as futile based on the impossibility of achieving the desired physiologic outcome, this approach could support a medical goal of doing no harm. 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. If agreement cannot be reached through clear and compassionate communication efforts, further input can be sought from ethics consultants.

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 1 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. Because such conversations and their outcomes have a large impact on the future care of the patient, on families, and on medical staff, 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 in spite of aggressive therapies an illness proves to be life-limiting, 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 (Chapter 40). 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 results only in prolonging death.

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 of burdensome interventions. It is necessary to continually evaluate the results of these treatments and the evolution of the illness to recognize whether such burdensome interventions continue to be the best medical and moral choices. Maintaining the focus on the child rather than on the interests of medical staff will help guide decision-making.

The decision about whether or not to attempt cardiopulmonary resuscitation 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 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 endpoint. In all cases, treatments should be tailored to the child’s clinical condition, balancing benefits and burdens to the patient.

Advance Directives

An advance directive (AD) 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 in spite of 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 health care institutions ask adult (>18 yr) patients whether they have completed an AD and, if not, inform them of their right to do so. Some states have approved the implementation of prehospital or “portable” ADs, 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 wish to be in the position of interpreting or honoring them. Some institutions have established local policies and procedures by which an appropriately executed outpatient AD can be honored upon a child’s arrival in the emergency department. Key features may include a standardized document format, review by an attending physician, ongoing educational, 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 to term in order to cherish a short time with the infant after birth, but 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 prior to 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.

An adolescent with a chronic and/or life-threatening condition should be supported in developing an AD as part of a comprehensive plan for end-of-life care. This approach can involve parents, medical caregivers, and other professionals who are familiar with the child’s condition and developmental abilities to understand death and to express wishes concerning the end of life.

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. Whether a patient is expected to recover or if death is the accepted outcome, medical caregivers are obligated to treat pain, dyspnea, severe anxiety, or other burdensome symptoms. In the terminally ill adult or child whose LSMT is being withdrawn in accordance with agreed-on goals of care, or in the spontaneously breathing patient who requires increasing doses of narcotics or benzodiazepines to maintain comfort, these acts may feel to the practitioner like they are causing death. It is generally accepted in Western medicine and in most major religions that the relief of pain and agitation under these circumstances is a moral good of such magnitude that potential secondary effects (such as respiratory depression or failing to prolong the dying process) are acceptable, albeit unintended consequences. Two key features of this “doctrine of double effect” (DDE) must be present for the actions to be ethically acceptable: (1) the unintended outcome of the medication or withdrawal of treatment (i.e., respiratory depression; earlier death) should not be the means of achieving the intended outcome (relief of pain or other targeted symptoms); and (2) intentionality is not a psychologic state, but an objective feature of the act itself (choice of medication, dose, timing, route of administration). The DDE provides a moral framework for the clinician who desires to provide compassionate end-of-life care without intending to accelerate the death of the terminally ill patient.

Care Of Disabled Newborns

In 1982, an infant with Down syndrome and esophageal atresia was allowed to die at 6 days of age at the parents’ request. Prior to this case becoming public, prevailing opinion was that withholding aggressive treatments from infants who were predicted to be significantly disabled from conditions such as Down syndrome or meningomyelocele was ethically acceptable, and was being done on advice of physicians who felt that they and families should be able to decide what was best for an individual infant. The public legal controversy resulted in federal child abuse legislation called the “Baby Doe Regulations,” prohibiting the withholding of medically beneficial treatment from disabled infants except under conditions of permanent unconsciousness, “futile” treatment, and “virtually futile” treatment that imposes excessive burdens on the infant. Today, treatment options and potential outcomes have improved, attitudes toward and social supports for disabled children have evolved, and initial aggressive treatment of infants with severe disabilities has become more common. Studies done since the Baby Doe Regulations went into effect indicate that most pediatricians supported parental rather than government control of such decisions, and felt that they were now constrained to institute treatments that served neither patients nor families well.

One consequence of the legislation was a shift from potential undertreatment to widespread overtreatment of severely disabled newborns, defined as life-prolonging treatment that, in the opinion of the physician, does not serve the interests of the child. The legislation has been difficult to enforce, and subsequent case law has upheld the right of a parent to decide to forgo LSMT in certain instances. The 2002 “Born Alive Act” defined a human being as any infant born alive at any stage of development. It has been thought by some to pose a risk to the ethical practice of providing palliative care for newborns, though many believe that no changes in patient management are necessary.

Active euthanasia of severely suffering disabled newborns has been legalized in the Netherlands, using a protocol designed to minimize risk of abuse and maximize transparency. While there may be some controversy over the subject in the USA, there is consensus that active euthanasia is not ethically acceptable in the care of infants and children.