PEDIATRICS Vol. 116 No. 6 December 2005, pp. 1602-1603 (doi:10.1542/peds.2005-2205)
Baby Doe Rules: In Reply
Loretta M. Kopelman, PhDDepartment of Medical Humanities,
Brody School of Medicine,
East Carolina University,
Greenville, NC 27858
Thank you for this opportunity to clarify further why I believe that the American Academy of Pediatrics (AAP) should continue to advance individualized and compassionate decision-making for all children by promoting the best-interest standard and acknowledging the dangers of the so-called Baby Doe rules. They apply only to infants under 1 year of age and are found in the federal requirements for states that seek funds under the Child Abuse Prevention and Treatment Act.1 Requiring maximal treatment unless the infant is comatose or dying, these regulations were viewed immediately by neonatologists and other pediatricians as seeking to alter standards of care and as giving too little weight to infants' pain and suffering, parental consent, or clinical judgment.2,3 They single out infants for treatments that restrict the sort of choices adults want for themselves and that are recommended by the AAP.4–7
Unlike the Baby Doe rules, the best-interests standard permits families and physicians some latitude regarding what ought to be done even if the person is neither comatose nor dying. For example, some families (with the advice of clinicians) may choose comfort care for their incompetent and imperiled relatives, whereas others pursue every vanishingly small chance for survival. Joint decisions by families and clinicians about what is best for incompetent or incapacitated relatives offer protection yet flexibility, unlike the Baby Doe rules.
The threat of the Baby Doe regulations became manifest when the Wisconsin Appellate Court recently used the Baby Doe rules in Montalvo v Borkovec to restrict interpretations of the best-interests standard, writing: "In the absence of proof of a persistent vegetative state, our courts have never decided it is in the best interests of a patient to withhold or withdraw life-sustaining medical care."8
Dr Hurst and I agree about the importance of individualized and compassionate care for all children but disagree about the dangers of the Baby Doe rules. She offers 4 reasons for not challenging the Baby Doe regulations, and each is problematic, or so I argue.
First, Dr Hurst claims that because "the Baby Doe rules are enforceable by a legal action initiated only by a state's child protective agency" and because no state has initiated them, she concludes that we should not be concerned about their impact. She concludes that the Wisconsin Appellate Court "would have reached the same conclusion even if the Baby Doe rules had not existed" and that its ruling is "gratuitous and not necessary" and not a function of the Baby Doe rules. I question her conclusions, because this appellate court clearly used them in its reasoning. Moreover, regulations articulated in federal rules and supported by appellate courts can be powerful forces in shaping behavior.
The second reason that Hurst gives is that this court ruling "only establishes precedent for the state of Wisconsin. No other state has taken the extreme position of the Wisconsin courts." She calls this ruling a "strident decision [that was] determined to uphold vitalism (life at all costs) and eliminate the use of the best-interest standard in Wisconsin." Yet, appellate court decisions are watched carefully in other jurisdictions and could be used or cited in ways that establish the same precedent in other states. Moreover, we should also care what happens to infants, families, and clinicians in other jurisdictions because, as she points out, vitalism is a view that causes unnecessary suffering and undercuts professional standards.
Hurst regards the Wisconsin Appellate Court decision as an extremist aberration, yet it matches the views of former President Ronald Reagan, his Surgeon General C. Everett Koop,9 and other right-to-life advocates who pressed for these Baby Doe rules.10 Reagan stated that the purpose of the Baby Doe regulations was to "affirm and protect the sanctity of all human life and reject a ‘quality of life ethic.’"11 The Wisconsin Appellate Court ruling, thus, fits with these intentions and in this sense is no anomaly.
Third, Hurst argues that it would be dangerous to challenge the Baby Doe regulations because "if the AAP directly states that the Baby Doe regulations bar the use of the best-interest standard...such an action would further weaken health care professionals' ability to use the best-interest standard.... The AAP has shown deep courage in incorporating the best-interest standard into its practice guidelines." Hurst's view on this, however, seems incompatible with her claims here and elsewhere12 that the Baby Doe rules are ambiguous and benign.
Finally, she links the best-interest standard with defending "fundamental privacy rights" including controversial political stances such as abortion. This seems problematic because, although criticisms of it exist, concerns span the political spectrum and seem to be based on misunderstandings. Some critics say that it requires what is "best" or "ideal," and this is self-defeating (everyone cannot have the best); others view it as too individualistic (it fails to take others into account) or unknowable, vague, or open to abuse. In answering these charges, I defend what I call the negative version of the best-interest standard, which reflects how it is generally used. I argue that it does not require decision-makers to do what is ideal, ignoring all other interests and values, but restricts decision-makers to a range of acceptable options; namely, "(1) it instructs decision makers to decide what act(s) are in the incompetent individuals immediate and long-term interests and maximize his/her net benefits and minimize net burdens, setting that act(s) as a prima facie duty; (2) presupposes a consensus among reasonable and informed people of good will about what choices for the incompetent individual are, all things considered, not unacceptable; and (3) determines the scope of the best-interest standard in terms of the scope of established moral and legal duties to incompetent individuals."13
Properly understood, the best-interests standard is not controversial but a well-established moral, legal, and social principle about how to treat incompetent or incapacitated individuals. For example, the appeals court in Maryland stated: "we have long stressed the ‘best interest of the child’ as the overriding concern of this court in matters relating to children."14
The Baby Doe rules should be challenged by the AAP because they impede individualized and compassionate care for children advocated by the AAP, and they give too little consideration to parental consent, clinical judgment, and duties to minimize unnecessary suffering and treat others the way we wish to be treated. We should not support rules that single out one group, namely infants under 1 year of age, for treatment that adults would not want for themselves. Acknowledgment by the AAP of the dangers of the Baby Doe rules would be an important first step on this road.
REFERENCES
- US Child Abuse Prevention and Treatment Act. Pub L No. 42 USC 5101 et seq
- Kopelman LM, Kopelman AE, Irons TG. Neonatologists judge the "Baby Doe" regulations. N Engl J Med. 1988;318 :677 –683[Abstract]
- Kopelman LM, Kopelman AE, Irons TG. Neonatologists, pediatricians and the Supreme Court criticize the "Baby Doe" regulations. In: Caplan AL, Blank RH, Merrick JC, eds. Compelled Compassion. Totowa, NJ: Humana; 1992:237 –266
- Singer P, Martin D, Kelner M. Quality end-of-life care: patients' perspectives.
JAMA. 1999;281
:163
–168
[Abstract/Free Full Text] - Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J. Factors considered important at the end of life by patients, family, physicians, and other care providers.
JAMA. 2000;284
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[Abstract/Free Full Text] - National Hospice Organization. Standards of a Hospice Program of Care. Arlington, VA: National Hospice Organization; 1990
- Kopelman LM. Are the 21-year-old Baby Doe rules misunderstood or mistaken [commentary]?
Pediatrics. 2005;115
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[Free Full Text] - Montalvo v Borkovec, 2002 WI App 147; 256 Wis. 2d 472; 647 N.W. 2d 413 ( 2002)
- Koop CE. 1989. Mercy, murder, & morality: perspectives on euthanasia—the challenge of definition. Hastings Cent Rep. 1989;19 (1 suppl) :2 –3
- Murray TH. The final anticlimactic rule on Baby Doe. Hastings Cent Rep. 1985;15 :5 –9
- Reagan R. Abortion and the conscience of the nation. In: Butler JD, Walbert, DF, eds. Abortion, Medicine and the Law. 3rd ed. New York, NY: Facts on File; 1986:352 –358
- Hurst I. First rule: choose your battles wisely [letter].
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[Free Full Text] - Kopelman LM. Rejecting the Baby Doe rules and defending a "negative" analysis of the best interests standard. J Med Philos. 2005;30 :331 –352[Medline]
- Grimes v Kennedy Krieger Institute, Inc. 782 A. 2d 807, 366 Md. 20 (Court of Appeals of Maryland, 2001) at 853
PEDIATRICS (ISSN 1098-4275). ©2005 by the American Academy of Pediatrics
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