How Should Decisions Be Guided

There are four important standards for healthcare decision making:

1. The first standard—self-determination—applies primarily to the voluntary decisions of legally competent and informed adults who make their own choices about their well-being and opportunities as long as they do not harm or violate the rights of others. As minors become more mature, they should be accorded more self-determination, but their preferences need not be honored as are those of adults (Holder, 1985, 1989). An adolescent with cancer who insists that he or she would rather die than lose a leg needs help to understand that reaction. The degree of irreversibility and the severity of the consequences often determine whether a minor's preferences should be honored. Minors' choices generally become more morally binding on adults when minors show that they understand and appreciate the nature of the situation in relation to their life goals. Adult guidance is needed when minors cannot demonstrate that their choices enhance their well-being and opportunities.

2. Like some adults, older children may prepare advance directives about their healthcare choices if they become incapacitated. Although a minor's choice need not be honored in the same way as an adult's decision, it may be an important consideration or seem morally binding in some circumstances. Dying children may, for example, indicate that they wish to donate organs or plan their funerals. Parents may want to follow such instructions carefully out of respect to the child's wishes.

3. A third standard—substituted judgment—applies to someone who once was able to express preferences. In using this standard, people select the option they believe the person would choose if he or she were able. Families often know their relatives well enough to predict the choices their relatives would have made. Children, especially those with serious or chronic illnesses, also may express general preferences that should guide parental choices. One child who was very sick insisted that he did not want to be maintained in a persistent vegetative state (PVS) "like a zombie."

4. The best-interest standard applies to those who do not have the ability or authority to make decisions for themselves. This standard maintains that decision makers should try to identify a person's immediate and long-term interests and then determine whether the benefits of an intervention or procedure outweigh the burdens. This does not mean that they seek what is absolutely best, because that may be impossible (the best doctor cannot treat everyone), but that they seek the best among the available options. This standard permits complex judgments about what on balance is likely to be best for an individual in light of the available options (Buchanan and Brock; Kopelman, 1993, 1997). For example, the benefit of obtaining a long and healthy life would outweigh the burden of enduring intense pain for a short time. The best-interest standard, however, might be used by parents, doctors, and nurses to withhold or withdraw maximal life-support treatment from children who have intense and chronic pain, with no prospects of improvement or foreseeable pleasures, understanding, or capacities for interaction.

In some cases objectively or intersubjectively confirmable estimates about pain and a well-understood prognosis force parents and doctors to choose between preserving biological life and providing comfort. Some children live in considerable discomfort from the technologies that keep them alive, such as a gastrostomy (a tube through which food goes directly into the stomach), intravenous lines, ventilators (breathing machines), long stays in intensive-care units, and a tracheotomy (a hole in the throat that aids breathing).

One goal of medicine, which should be balanced against others, is to preserve and prolong biological life. Since ancient times this ideal has been understood to mean that one ought to prevent untimely death. However, a question remains regarding the best interests of a person whose life is continued by means of maximal treatment that is a burden to that person (U.S. President's Commission, 1983; Buchanan and Brock; Kopelman, 1993). In cases where doctors and others disagree about what is best, it is hard to apply the best-interest standard. In such situations and for the general reasons discussed above, which give parents wide discretion when doctors disagree about what is best, an established legal and moral consensus using the best-interest standard allows parents to choose from options advanced as best (Buchanan and Brock; Holder, 1985, 1989; U.S. President's Commission, 1982, 1983).

The best-interest standard was challenged by President Ronald Reagan (1986) and Surgeon General C. Everett Koop (1989), who believed that quality-of-life considerations were likely to be abused. Under their influence the federal government in 1984 amended its child-abuse laws and adopted the so-called Baby Doe guidelines ("Child Abuse and Neglect," 1985). These rules forbid withholding or withdrawing lifesaving care from a sick infant unless the child is dying or is in an irreversible coma or when treatment is both virtually futile in terms of survival and inhumane. To forgo lifesaving treatments it is not sufficient that the treatment be inhumane or gravely burdensome, as it would be in the Roman Catholic tradition. Suffering cannot be taken into account except when the child cannot survive even with maximal treatment (Kopelman, 1989a, 1993).

The Baby Doe rules are controversial because they radically restrict parental discretion and standard medical practice. In a 1988 survey U.S. neonatologists indicated that the use of this policy for judging when to withdraw or withhold care for infants would result in overtreatment, poor use of resources, and insufficient attention to suffering (Kopelman et al., 1988).

Defenders maintain that properly understood, the best-interest standard is a useful way to protect children and others who are incompetent (Kopelman, 1997). For example, the U.S. President's Commission states, "This is a very strict standard in that it excludes considerations of the negative effects of an impaired child's life on other persons, including parents, siblings and society" (U.S. President's Commission, 1983, p. 219).

Allen Buchanan and Dan Brock (1989) argue that quality-of-life assessments are not open to abuse if they are limited to judgments about what is best for the individual patient. The courts and others who reject such judgments made on behalf of incompetent people, they argue, do not distinguish two kinds of quality-of-life judgments. Quality of life judgments based on considerations of social worth try to weigh the interests or value of a person's life against the interests or value of other people's lives; they are comparative. In contrast, noncomparative quality of life judgments try to consider the value of the life to the person, comparing the value of living the individual's life to having no life at all. Although this comparison is difficult to make, it can be guided by choices made by competent adults who decide that there are worse things than death, including certain burdensome treatments to keep them alive. Buchanan and Brock (1989) hold that in applying the best-interest standard one should use noncomparative estimates, contemplating only the quality of life for that individual; a person's social value should not be part of the assessment. Noncomparative quality-of-life judgments, then, should be circumscribed very carefully and strictly. It is possible to reflect, for example, on whether most people would want to live such a life.

To some extent the effectiveness of the best-interest standard relies on the degree of social consensus about what is best for children and other persons who lack decision-making capacity. Consequently, it is hard to use in cases in which there is sustained disagreement, as there may be about when and how to use quality-of-life considerations. Arguably, one cannot avoid quality-of-life decisions entirely. For example, the Baby Doe regulations state that one need not provide maximal treatment to those who are permanently comatose, and that is a quality-of-life judgment. The debate also concerns what discretion should be given to parents, physicians, and other clinicians to select the best available option.

Kopelman (1997) has argued that some of the criticisms of the best-interest standard stem from confusing its different meanings. First, it is used as an ideal. For a child to receive a very scarce resource for a marginal benefit may be ideal yet unreasonable once one considers the claims and needs of others and the available resources. Nonetheless, it is important to consider what might be ideal for a child in framing what should be done in light of others' needs and the available resources. Ideals are also important in giving direction to people's efforts. The ideal of no children being abused or neglected gives direction to advocates for children.

Second, the best-interest standard is used in the sense of what is best given the options or what is best all things considered. For example, it may not be possible to give each child ideal healthcare, but it may be realistic to seek basic healthcare for all children. Another example is that some parents are not ideal guardians, but the state does not step in unless their children are endangered. If parents refuse lifesaving healthcare for children, the courts may remove custody from the parents temporarily or permanently; they then may use the best-interest standard to seek what is best for the child given the available options. They are not seeking what is ideal, because that may not be realistic, but what is best, all things considered, for the child given the available options.

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