Some controversies over the abandonment of specific interventions remain. For example, further consideration is given to whether artificial nutrition and hydration at the end of life are morally or clinically different from other interventions and whether they should be maintained if other life-sustaining measures are suppressed (see, for example, Nelson et al., 1995; Burck, 1996; Post, 2001; Gillick, 2001). Surveys of paediatric specialists have shown that specialists in the same clinical situations are much more likely to forego resuscitation or mechanical ventilation than artificial hydration (Nelson et al., 1995; see also Smith & Wigton, 1987). Other studies suggest that clinicians mistakenly believe that artificial nutrition and hydration are always required by law in situations or jurisdictions where this is not the case (Meisel et al., 2000). Although research is limited and contradictory, some suggest that artificial feeding or hydration as death approaches may be more distressing than beneficial in some circumstances (Finucane et al., 1999; Brody, 2000; see also Chapter 5). Regardless of clinicians` beliefs and evidence, family values and understandings may differ. Over the past few decades, many legal disputes and ethical debates about infant and child care have revolved around the decision to start or stop medical interventions. Other disputes relate to the limits of parents` authority to decide on their child`s care and whether and to what extent quality of life and financial considerations should influence decisions about life-sustaining treatment. This section briefly describes these decisions and the issues they raised. Much of the initial discussion on some of these issues, such as the retention and withdrawal of life-sustaining technologies, took place in the 1970s and 1980s, before increased attention to the techniques and benefits of palliative care. Again, issues are not necessarily unique to children, but tend to be emotionally charged and more difficult for everyone involved.
Ethics committees may also propose professional consensus on institutional guidelines for particular issues, such as DNR orders, and attempt to build professional consensus. In addition, committees usually have an educational function by teaching other members of the hospital community the application of ethical concepts in clinical situations. Judicial intervention based on the legal principle that failure to receive adequate medical care for a child is a violation of the state`s child neglect laws is always an option when doctors deem it appropriate. Until recently, when a doctor testified that a child would die or become permanently disabled if not treated promptly, the court order was automatic. This is not as uniformly the case today, but it is still clearly the case in situations where parents refuse treatments that could cure or significantly alter the course of the child`s illness. Informed consent is not only necessary to meet medico-legal requirements, but it is in fact a central issue with respect to patients` „free choice“ and active participation in their own administration. It is fraught with pitfalls in capable adults and doubly difficult to achieve in minors. Truly informed consent can only exist if patients are sufficiently informed to weigh the pros and cons of treatment, and if their consent is given freely without coercion, self-interest or bias on the part of physicians or third parties. Disputes over what values should prevail in a patient`s care can end up in court if other approaches to conflict resolution fail and death or some other outcome has not intervened to render the conflict obsolete. The justice system provides a socially sanctioned process for resolving individual disputes through legislation, regulations and jurisprudence (i.e., precedents set by previous decisions). As courts increasingly face disputes over highly technical issues, judges and policy makers are grappling with questions about the ability of judges and jurors to understand and weigh scientific and technical information, often presented by experts who differ in their presentation and evaluation of that information.
In general, litigation tends to be an expensive, disruptive and unpredictable means of conflict resolution that is stressful for all parties. As with other aspects of palliative care, end-of-life care and bereavement care, the legal system and ethical frameworks discussed here reflect the history and dominant culture of our country. While the U.S. legal system and arguments based on biomedical ethics can sometimes confuse or surprise those who grew up in this country, people who grew up in other cultures may find them incomprehensible or perhaps shocking. Especially in legal matters, flexibility to accommodate cultural differences may be limited. Nevertheless, it is always humane and prudent for clinicians, social workers and legal advisors to be sensitive to differences in cultural values and experiences, and to try to minimize the conflict and family distress associated with these differences. (See Appendix D for a more in-depth discussion of cultural diversity.) Ethicists and judges generally agree that there is no significant ethical or legal difference between the decision not to start treatment and the decision to discontinue treatment (provided appropriate attention is paid to issues such as patient comfort) (see, for example, President`s Commission, 1983; see also AMA, 1994a).3 However, in the Committee`s experience, clinicians and parents may experience emotions that it is more difficult and morally difficult to discontinue treatment once it has been started than not to do so. to initiate it in the first place. Most discussions of clinical and medical ethics focus on the commitments of individual professionals rather than care teams. As explained below, different members of a child`s healthcare team may sometimes have different perspectives on what constitutes ethical care. While physicians generally have the legal and professional authority to assert themselves, the persistence of unresolved and unacknowledged conflicts can impede the implementation of decisions, harm team members, and subtly (sometimes explicitly) undermine patient and family trust in team members.
Some conflicts may reflect individual values, traits, and personalities. Others may be rooted in different socializations and professional norms. In general, parents have the legal right to make decisions about their child`s medical care. This parental authority is sometimes questioned, usually when parents refuse treatment recommended by their child`s doctor. In addition, adolescents have sometimes sought to control important decisions about their future, often in situations involving reproduction, but sometimes also in the management of advanced diseases.