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.