Deciding when to withdraw life support from children
Clinicians need more emotional support as well
Parents often find the agonizing decision of withdrawing life support from a child something they can hardly bear. Physicians and nurses who care for the child often harbor similar anxieties, but their strong commitment to helping the child by continuing aggressive therapy can fuel an ethical conflict between parents and caregivers if it is not recognized and addressed.
This particular communication issue is just one of the legal and ethical questions that members of the Los Angeles County Bar and Medical Associations’ joint committee on biomedical ethics recently tackled in drawing up formal guidelines for foregoing life-sustaining treatment of minors. "This is an effort to provide guidance in response to numerous requests from health care professionals who were familiar with the committee’s previously published guidelines for adults," explains Robyn Meinhardt, RN, JD, a health care attorney with Foley, Lardner, Weissburg, and Aronson in Los Angeles and committee member. (See the guidelines, inserted in this issue.)
"There is no way to answer the uncertainties in these situations in any easy manner," says Vicki Michel, MA, JD, a bioethics consultant and professional mediator. Michel is serving as a part-time bioethics attorney for the California Medical Association in San Francisco and is a professor of medical ethics at Loyola University in Los Angeles. She co-chaired the joint professional committee that drew up the guidelines.
"We cannot draw a substantive line that tells doctors and parents when to withdraw treatment," she says. "What we hope to achieve with the guidelines is the creation of a process that helps parents and the health care team come to an agreement on what is best for the individual child. We want to ensure that all of the ethically acceptable alternatives are on the table and that everyone accepts the legitimacy of the others’ points of view."(See examples of questions your ethics committee should ask, p. 102.) Making sure this process takes place, in a nutshell, is the responsibility of the institutional ethics committee, she says.
Four decision making principles form the foundation of the guidelines, Meinhardt says. She urges hospital ethics committees to incorporate these principles into any similar guidelines their institutions develop.
1. Presumption of parental authority. Parents are assumed to be acting in the best interest of their child. However, they must be given complete and easy-to-comprehend information about the child’s diagnosis and prognosis.
Although physicians can disagree about the best course of treatment in some cases, they should work out differences in opinion among themselves. Parents should never be placed in a position of trying to decide which specialist has the "right" opinion, Meinhardt says. (See story on communication strategies, p. 103.)
Physicians must be cautious not to substitute their own judgment about the child’s best interests, Michel says. Sometimes, tragedy in a neonatal or pediatric intensive care unit occurs when doctors overrule parents and ask the courts to uphold their decision to continue care in a futile situation.
"It is an uphill battle to help physicians and other caregivers understand and accept the disease process," says Cheryl Lew, MD, associate professor of pediatrics and chair of the ethics resource committee at Children’s Hospital of Los Angeles. "Sometimes it is hard for the health care professional to see the burdens of treatment," she says.
For 15 years, the ethics committee has struggled through education, policy development, and discussion to "enhance the willingness of clinicians" to understand that death does occur in children. (See excerpt of Children’s Hospital’s policy on initiating withdrawal or foregoing life-sustaining treatment, inserted in this issue.) Children with AIDS, ironically, have helped create this acceptance, Lew tells Medical Ethics Advisor.
Hospital ethics committees could alleviate some ethical conflicts by developing a mechanism to support caregivers through the grief of a child’s death.
2. The child should be included in the decision making process to the extent of his or her abilities. The guidelines do not set an age for consent or even consideration, but rather support the idea that the more mature the minor, the greater the weight both parents and physicians should give to his or her opinion.
3. Parents and health care providers must consider the minor’s quality of life from his or her perspective. The guidelines stress that this quality of life cannot be judged by the value a life may have to society.
4. The minor’s pain and suffering should be of paramount concern to health care providers, who must provide effective pain management and palliative care for dying children.
Meinhardt says the same principles of managing pain in adult patients must be followed in pediatric care. If the pain management has the unintended side effect of hastening a child’s death, it is justified.
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