Published online August 1, 2005
PEDIATRICS Vol. 116 No. 2 August 2005, pp. 514-515 (doi:10.1542/peds.2005-1077)

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Baby Doe Rules Have Been Interpreted and Applied by an Appellate Court: In Reply

Loretta M. Kopelman, PhD
Department of Medical Humanities
Brody School of Medicine
East Carolina University
Greenville, NC 27858

In Reply.—

I thank Dr Clark for supporting my view1 that the American Academy of Pediatrics (AAP) should withdraw its apparent support of the "Baby Doe" rules.2 These regulations had to be adopted by states as a precondition of federal Child Abuse Protection and Treatments Act funding.3 I especially appreciate Dr Clark bringing into the discussion the Wisconsin Appellate Court’s interpretation and application of these rules in Montalvo v Borkovec.4 Even if this decision does not directly test the criteria for withdrawal or withholding of maximal treatments for infants as directly as the Supreme Court did in the Bowen decision,5 it offers an interpretation of them by an appellate court, showing unambiguously that these federal funding regulations do not allow the sort of discretion needed for individualized and compassionate decision-making for infants advocated by the AAP.6,7 Wisconsin’s Appellate Court understood these regulations as requiring maximal treatment unless the infant is in an irreversible coma or dying. The case concerned a 23-week-old premature infant, and the Wisconsin Appellate Court ruled that the baby’s parents had no role in consenting for or refusing maximal treatment because the child was not dying or comatose. "The implied choice of withholding treatment proposed by the plaintiffs, is exactly what CAPTA [Child Abuse Protection and Treatments Act] prohibits."4 This was the same interpretation that the US Supreme Court5 gave in its review of an earlier but similar set of Baby Doe rules8 that President Reagan promulgated under civil rights law.9 In contrast to the Wisconsin court,4 however, the Supreme Court in Bowen v American Hospital Association5 offered scathing criticism of the first set of Baby Doe rules themselves, saying no evidence had been given for the need to adopt these rules and that they ignored the role of parental consent, sought to alter standards of care, and took an oversimplified approach to medical decision-making. This understanding exactly squared with the views of many neonatologists.10

Thus, Dr Clark offers more evidence to show that the Baby Doe rules unambiguously embrace the right-to-life view that maximal treatments cannot be withheld or withdrawn unless an infant is dying or comatose. The letter and spirit of these Baby Doe rules exactly reflect the view of their proponents, President Reagan,11 his Surgeon General, C. Everett Koop,12 and other advocates who claimed that the Baby Doe rules were needed to stop unacceptable "quality-of-life" interpretations about what was best for infants.13,14 Thus, claims by some members of the leadership of the AAP that the Baby Doe rules are misunderstood, allow all reasonable discretion, or can be mitigated by an ethics committee are mistaken.13–15 The words "reasonable medical care," "appropriate," "inhumane," or "virtually futile" taken in context do not open the doors of discretion as these defenders claim. Some assert that these special rules are needed for infants <1 year of age because clinicians and parents disvalue disabled infants, but they offer no data for such a sweeping conclusion.14

The Baby Doe rules are inferior to the older and more established best-interests standard, first in allowing, within limits, greater individualized treatments plans. I defend what I call a "negative version of the Best Interests Standard."16 It instructs decision-makers to assess what act(s) are in the incompetent individual’s immediate and long-term interests and maximize his or her net benefits and minimize net burdens, setting that act(s) as a prima facie duty. Second, this standard presupposes a consensus among reasonable and informed persons of good will about what choices for the incompetent individual are, all things considered, not unacceptable. Third, the scope of the best-interests standard should be understood in terms of the scope of established moral or legal duties to incompetent individuals. An advantage in analyzing the best-interests standard in this way is that we establish limits while making room for differences of opinion among informed and competent people of good will about what is best given the available options. Some people may decide to forego painful and highly experimental treatment for themselves or their relatives for pain-free weeks at home, whereas others might want to pursue every chance no matter how small.

The best-interests standard is also superior to the Baby Doe rules because it does not single out 1 group of incompetent persons, infants <1 year of age, for a "right-to-life" policy that others would not tolerate for themselves. Faced with a choice between using maximal treatments to prolong a life of unmitigated pain and suffering or to prolong a noncomatose, minimally conscious life, many people and policy makers believe that there are sometimes worse things than dying.6,7,17–20 This attitude is reflected in the first priority of palliative care, namely, the relief of pain and suffering.19 If we agree that it is wrong to do to others what we would not want for ourselves and that we would not want a Baby Doe policy for ourselves (maximal treatment unless we were dying or comatose), then we should not adopt the Baby Doe policy for infants <1 year of age.

The best-interests standard is superior to the Baby Doe rules as a guidance principle because it uses the same rule for all persons lacking decision-making capacity and it permits, within socially sanctioned limits, the sort of compassionate and individualized decision-making widely recommended by policy makers,17–20 including by the AAP.6,7

REFERENCES

1. Kopelman LM. Are the 21-year-old Baby Doe rules misunderstood or mistaken [commentary]? Pediatrics. 2005;115 :797 –802[Free Full Text]
2. Nondiscrimination on the basis of handicap; procedures and guidelines relating to health care for handicapped infants—HHS. Final rules. Fed Regist. 1985;50 :14879 –14892
3. US Child Abuse Prevention and Treatment Act. Pub L No. 42 USC 5101 et seq
4. Montalvo v Borkovec, WI App 147; 256 Wis. 2d 472; 647 N.W. 2d 413 (2002)
5. Bowen v American Hospital Association, 106 S Ct 2101 (1986)
6. American Academy of Pediatrics, Committee on Fetus and Newborn. The initiation or withdrawal of treatment for high-risk newborns. Pediatrics. 1995;96 :362 –364[Abstract/Free Full Text]
7. American Academy of Pediatrics, Committee on Bioethics. Guidelines on foregoing life-sustaining medical treatment. Pediatrics. 1994;93 :532 –536[Abstract/Free Full Text]
8. Nondiscrimination on the basis of handicap; procedures and guidelines relating to health care for handicapped infants—HHS. Final rules. Fed Regist. 1984;49 :1622 –1654[Medline]
9. US Rehabilitation Act, Pub L No. 93-112, 29 USC 794
10. Kopelman LM, Kopelman AE, Irons TG. Neonatologists judge the "Baby Doe" regulations. N Engl J Med. 1988;318 :677 –683[Abstract]
11. 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
12. Koop CE. The challenge of definition. Hastings Cent Rep. 1989;19(1 suppl); 2 –3
13. Murray TH. The final anticlimactic rule on Baby Doe. Hastings Cent Rep. 1985;15 :5 –9
14. Robertson JA. Extreme prematurity and parental rights after Baby Doe. Hastings Cent Rep. 2004;34(4) :32 –39
15. American Academy of Pediatrics, Committee on Bioethics. Ethics in the care of critically ill infants and children. Pediatrics. 1996;98 :149 –153[Abstract/Free Full Text]
16. Kopelman LM. Rejecting the Baby Doe regulations and defending the "negative" analysis of the best-interests standard for infants. J Med Philos. 2005; In press
17. 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 :2476 –2482[Abstract/Free Full Text]
18. Singer P, Martin D, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2) :163 –168
19. National Hospice Organization. Standards of a Hospice Program of Care. Arlington, Virginia: National Hospice Organization; 1990
20. Byock IR, Caplan A, Snyder L. Beyond symptom managements: physician roles and responsibilities in palliative care. In: Snyder L, Quill TE, eds. Physician’s Guide to End-of-life Care. Philadelphia, PA: American College of Physicians, American Society of Internal Medicine; 2001

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PEDIATRICS (ISSN 1098-4275). ©2005 by the American Academy of Pediatrics

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