Withdrawing and withholding life-sustaining treatment in children.

The decision to withhold or withdraw life-sustaining treatment from a child is always a difficult one. As health care professionals and parents seek to do what is best for a child, they may face the difficult challenge of determining when the benefits of a medical treatment no longer justify the burdens imposed on the child. Tournay discusses a practice framework published by the Royal College of Pediatrics and Child Health (RCPCH) to identify circumstances in which intensive treatment may not be in the best interest of the child. Her discussion includes several helpful observations to assist the clinician in avoiding conflicts with parents over these issues. Withdrawing or withholding life-sustaining treatments may be ethically justified when doing so best serves the interests of the patient. If the patient is competent to make medical decisions and has made her wishes known, those wishes should be respected. The law does not recognize children as competent to make medical decisions until they reach a certain age (18 years old in most states). However, adolescents are often capable of understanding the consequences of their decisions, may have given serious thought to what interventions they would consider to be excessive, and may be competent to make complex decisions about their medical care. When possible, these adolescent patients should be included in decisions regarding their care and have their wishes respected. In situations where the patient is not competent to make decisions about his or her medical care, the decision to withdraw or withhold a given treatment modality may be justified when the burdens and harms of the intervention exceed any potential or actual benefits to the patient. The RCPCH framework suggests 5 circumstances in which aggressive medical intervention ceases to be in the best interest of a child. Brain death and permanent vegetative state are 2 situations in which a child can no longer appreciate benefit from any therapy, and life-sustaining interventions, therefore, may be justifiably discontinued. The “no chance” situation, the “no purpose” situation, and the “unbearable” situation are all examples of situations in which the burdens and harms of continuing a therapy frequently exceed any benefit or potential benefit the therapy might offer. It is important to note, however, that the determination of what constitutes a no chance, no purpose, or unbearable situation may be a matter of legitimate dispute. Tournay illustrates this important truth in her discussion of a no purpose case in which quality of life becomes a point of contention. While a decision to withdraw ventilator support or withhold antibiotics certainly has medical and scientific dimensions, values are inherently enmeshed in these decisions. Burden and benefit are not easily quantified concepts, and different people will come to different conclusions about what is best or unbearable or without purpose in a given situation. Because most decisions to discontinue or withhold aggressive medical interventions in a critically ill or dying child ultimately involve an assessment of what is best for that child—an assessment that involves a weighing of values—health care professionals should not impose a decision in the face of parental dissent. The goal is collaborative decision making with the welfare of the child at the center of the discussion.1 Justice requires that in situations of intractable disagreement, institutional procedures (like an ethics consultation service) exist for the fair resolution of conflicts. Children will sometimes die despite our best efforts, and we run the risk of compounding that tragedy when we lack the courage and wisdom to recognize the limits of our technology. A misguided effort to “save” a child can easily rob her of the opportunity to be touched and cared for by those she loves, to say goodbye, and to be held by those who love her without the distraction of overly burdensome interventions. We can too easily forget that the patient and not the disease is the object of our care. Stanley Hauerwas has perhaps said it best: “The great art of medicine is to care for them even when you cannot cure them.”2