When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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8. Ethical and Legal Issues
8. Ethical and Legal Issues
Pages 293-327
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From page 293... ...
Even so, when parents question or disagree with the health care team or hospital management, they may perceive some responses as legalistic and intimidating rather than constructive and compassionate. One goal of palliative and end-of-life care is to minimize avoidable conflicts related to poor communication, cultural misunderstandings, deficient clinical care, and approaches to decision making that fail to assure families that they and the health care team are doing their best for the child.
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From page 294... ...
One example is whether schools serving medically fragile children must honor parental requests that cardiopulmonary resuscitation not be attempted for their child. Another involves getting permission from an abusive parent to withdraw life support when the parent will be charged with murder after the child's death.
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From page 295... ...
TYPES OF DECISIONS In recent decades, many legal disputes and ethical debates about care for infants and children have involved decisions to start or stop medical interventions. Other disputes focus on the limits of parents' authority to decide about their child's care and on whether and to what extent qualityof-life and financial considerations should influence decisions about lifesustaining treatments.
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From page 296... ...
. more and more I've realized that it's going to unfold the way that family needs it to unfold" (Mildred Solomon, Ed.D., Education Development Center, taken from interviews conducted for the Initiative for Pediatric Palliative Care, unpublished analysis by Hardart et al., 20021.
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From page 297... ...
Thus, it is important for those responsible for such interventions to be thoroughly knowIedgeable about all clinical and ethical aspects of initiating and stopping them. A recently reported survey of clinicians involved in pediatric intensive care found that although 78 percent of physicians agreed that the decision not to start an intervention (such as mechanical ventilation)
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From page 298... ...
, blood transfusions, antibiotics, and dialysis.5 Decisions about life-sustaining interventions especially resuscitation attempts are often made in an atmosphere of crisis and even panic, but this is not always the case. For example, mechanical ventilation may be begun in a child with a progressive neuromuscular disease such as muscular dystrophy after extended discussion and profound reflection by the family, the child, and the care team on the benefits, risks, and burdens of this action.6 Still, even when parents know that their child has an invariably 4Resuscitation involves aggressive measures to restore spontaneous breathing and blood circulation following cardiac or respiratory arrest.
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From page 299... ...
For example, discussion continues about whether artificial nutrition and hydration at the end of life are morally or clinically different from other interventions and whether they should be maintained when other life-support measures are forgone (see, e.g., Nelson et al., 1995; Burck, 1996; Post, 2001; Gillick, 2001~. Surveys of pediatric specialists have found that specialists are much more willing to forgo resuscitation or mechanical ventilation than artificial hydration given the same clinical situations (Nelson et al., 1995; see also Smith and Wigton,1987~.
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From page 300... ...
Other Treatments Interventions such as resuscitation and mechanical ventilation are usually intencleci to sustain life temporarily, for example, when a patient is incapacitated as a result of surgery or injury and when recovery or proiongecr meaningful rite IS a realistic goal. They are not intencleci to cure or to alter the unclerlying clisease.
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From page 301... ...
Resources as ~ Criterion in Decisions As health care costs have escalated since the 1960s, clinicians and others have become increasingly concerned about real or potential conflicts between clinicians' responsibilities to individual patients and their obliga
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From page 302... ...
Ethical Obligations at the Individual Level At the individual level, ethical analyses generally focus on the obligations of clinicians, first, to individual patients and, second and less often, to those close to or responsible for a patient. Most analyses of clinical decisionmaking devote little attention to parental responsibilities, focusing instead on the responsibility of clinicians and others to guide and redirect those parents who are viewed as acting against their child's best interests.
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From page 303... ...
1lMedical ethics extends beyond clinical practice to cover legal obligations, relationships with other professionals, and community responsibilities. For example, the American Medical Association's principles of medical ethics, among other provisions, state that physicians should report other physicians who have deficits in character or competence and that they should, except in emergencies, be free to choose the patients they serve (AMA, 2001)
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From page 304... ...
. Most discussions of clinical and medical ethics focus on the obligations of individual professionals rather than care teams.
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From page 305... ...
In other cases, physicians may resist such treatment because they believe it harms the child, violates their clinical values, and misuses limited community resources.l2 Indeed, the effort to define a quantifiable concept of "futile" treatment 12 These physicians may, however, accept that it is humane to provide a limited amount of care that cannot benefit a patient but that can reduce the suffering of family members. Thus, even when a child is, by clinical criteria, brain dead, a physician may delay removal of life support to give parents time to absorb the information, to come to terms with the decision to remove life-support equipment, and to say their good-byes in peace.
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From page 306... ...
Efforts to define futile care have also been motivated by the expectation or hope that the application of such a definition in practice could help control health care costs. Two studies of pediatric intensive care in single institutions concluded that only a small percentage of patients met any one of several definitions of futility and that their care generally involved relatively limited resources (SachUeva et al., 1996; Goh and Mok, 2001~.
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From page 307... ...
Eliminating or revising these restrictions would take state and national action. Further, despite various educational efforts, it is clear that physicians and other care team members sometimes misunderstand both the evidence base and the ethical context for life-support interventions and are not properly prepared intellectually or emotionally to inform and advise patients and families.
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From page 308... ...
Nonetheless, extended or severe conflict about care of a gravely ill or injured child may be very destructive to all involved and may subject children to needless suffering, for example, as clinicians and family argue about treatments. Strategies to prevent or resolve conflicts about clinical care can operate at the individual level.
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From page 309... ...
When organizations make family conferences or protocols for counseling routine elements of pediatric care, they become system-level strategies for preventing or managing conflict (see, e.g., Hansen et al., 1998; Curtis et al., 2001~. Team conferences without family members present may also be employed to deal with conflicts among care team members, for example, when physicians and nurses disagree about the use of a life-sustaining intervention.
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From page 310... ...
, three experts in adult palliative care proposed a consensus-based approach to decisionmaking for those who are unable to make decisions about their own care (Kariawish et al., 1999; see also Hoffman, 2001~. The authors also offer suggestions about how to handle situations when discussion has not resulted in a consensus about the care of a patient who cannot make decisions about his or her own care.
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From page 311... ...
Nonetheless, when capitation payments for physician services or fee-for-service payments for physician office visits are unreasonably low, as is often the case with Medicaid, and when payment policies limit or preclude payment for counseling, team conferences, and other kinds of communication, financial incentives clearly do not support the communication strategies described here and in Chapter 4. Thus, just as research, professional education, and organization structures have to support good clinical practice, so must financing policies.
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From page 312... ...
If misunderstanding of facts or terminology is a consistent problem, can training programs and protocols be created to help clinicians communicate more successfully or might public education programs be helpful? Ethics Committees Ethics committees and similar groups constitute a system-level effort to assist in the resolution of disputes about clinical care (see, e.g.
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From page 314... ...
Draft standards for ethics consultations have been developed by a task force that included the Society for Health and Human Values, the Society for Bioethics Consultation, and several other organizations (SHHV/SBC, 1998~. Research on the consequences of ethics consultations or ethics committee involvement in decisions about patient care is limited, but some studies suggest a positive role (Dowdy et al., 1998; Schneiderman et al., 2000~.
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System-leve! finance reform is essential, although it will never provide all the resources that health care professionals and families want.
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Clinical practice guidelines or protocols represent one focused systemleve! strategy to create a credible, authoritative, evidence-based framework to guide individual patient care decisions (IOM, 1990a, 1992~.
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The recommendations focus on knowledge to improve clinical care, but better knowledge is also important to inform ethical and legal decisionmaking. 1Litigation and Legis~tion Disputes about which values should prevail in a .
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From page 318... ...
The development of statutes or regulations may or may not take scientific evidence into account and may or may not attempt to reflect or create clinical or community consensus about an area of disagreement. For example, state laws about adolescent decisionmaking "form a patchwork quilt of rights and limitations" that neither reflects nor contributes to a coherent view of adolescent capacity to make medical decisions (Oberman, 1996, p.
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From page 319... ...
King County Hospital, 390 US 598, 1968~. Similarly, if a child had acute appendicitis but his parents refused to consent to any medical care at all, a court order would be issued.
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From page 320... ...
It is quite another to obtain a court order to administer chemotherapy or other treatment over parental objections when the parents' cooperation is required to bring the child for continuing outpatient services. If their objections are sufficiently adamant, they can leave the state with the child (In re Chad Green LIn re: Custody of a Minor]
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From page 321... ...
Camp, 116 F Supp 2d 295, 2000, 2001 WL 868354, CCA 2, July 27, 2001~. In some circumstances, however, physicians may find it advisable to obtain a court order before terminating life support over parental objections.
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From page 322... ...
Nonetheless, the findings of an ethics committee have no legal standing and cannot be used alone as the basis for termination of life support.
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From page 323... ...
If a minor's marriage is dissolved, he or she remains emancipated. In addition to these categories of emancipated minors, many states have enacted statutes providing other contexts in which a minor (with or without a court order)
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At the time, some states began enacting minor treatment statutes giving a minor of a specified age (usually 16, but in some states as young as 14) the right to , , , consent to any medical treatment on his or her own without parental consent.
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Durfee, 87 NYS 2d 275 NY 1949~. 17In 2000, West Virginia passed the Health Care Decisions Act (Annotated Code of West Virginia, Chapter 16, Article 30, Section 3(b)
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From page 326... ...
They did not apply, for example, to a healthy newborn severely injured in an automobile accident on the way home from the hospital or to a 13-month-old child with birth defects. The regulations were struck down, republished, and finally declared unconstitutional by the United States Supreme Court in 1986 (Bowen v.
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From page 327... ...
Although the emphasis of these strategies will often be on physicians and parents as decisionmakers, as recommended in Chapter 4, children should be involved in discussions about their care consistent with each child's intellectual and emotional maturity and preferences and with sensitivity to family cultural background and values. The next chapter discusses directions for improving health professions education in palliative, end-of-life, and bereavement care.
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