Rescuing Baby Doe
| Citation | Vol. 25 No. 4 |
| Publication year | 2010 |
Georgia State University Law Review
Article 5
3-21-2012
Rescuing Baby Doe
Mary Crossley
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Recommended Citation
Crossley, Mary (2008) "Rescuing Baby Doe," Georgia State University Law Review: Vol. 25: Iss. 4, Article 5. Available at: http://digitalarchive.gsu.edu/gsulr/vol25/iss4/5
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Mary Crossley*
Introduction
The twenty-fifth anniversary of the Baby Doe Rules offers a valuable opportunity to reflect on how much has changed during the past two-and-one-half decades and how much has stayed the same, at least in situations when parents and physicians face the birth of an infant who comes into the world with its life in peril.
The most salient changes are the medical advances in the treatment of premature infants and the changes in social attitudes towards and legal protections for people with disabilities. The threshold at which a prematurely delivered infant is considered viable has advanced steadily earlier into pregnancy, and the interventions developed to ameliorate the effects of premature delivery have become more—but not fully—effective, as discussed by other symposium participants. During the same period, Congress passed the Americans with Disabilities Act (ADA)1, providing individuals with disabilities with broad protection against discrimination, and it recently reaffirmed its intent that the ADA be broadly construed in the ADA Amendments Act of 2008.2 Despite the advances in medical treatment and in legal protections for and societal attitudes regarding people with disabilities, however, the law regarding treatment decisions for newborns with disabilities has remained remarkably static.
Changes in the past twenty-five years in neonatal medicine and in the legal and social discourse regarding disability have led to increased complexity in teasing out how medical treatment choices at the beginning of life implicate disability concerns. This Essay describes that increased complexity and how it relates to the
* Dean and Professor of Law, University of Pittsburgh School of Law. I owe thanks to Nick Cassell for his valuable research assistance.
1. Americans with Disabilities Act of 1990, 42 U.S.C. §§ 12101-12213 (2006), amended by ADA Amendments Act of 2008, Pub. L. No. 110-325, 122 Stat. 3553-3559 (2008).
2. ADA Amendments Act of 2008, Pub. L. No. 110-325, 122 Stat. 3553-3354 (2008).
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disability concerns that originally prompted the enactment of the Baby Doe Rules. It will then proceed to suggest how analogizing these decisions to rescue situations might inform our thinking about how to give disability concerns their due. The Essay will close by suggesting that a richer conception of the Baby Doe Rules as part of child welfare law may help us situate a role that disability advocacy might play in influencing—if not controlling—how these complex situations unfold. The Essay's purpose is not to provide answers to the questions that vex medical providers about the legal limits on parental and provider decision-making, but simply to offer a perspective on the nature of the questions we should ask.
I. Increased Medical Complexity and the Baby Doe Rules
Beginning with a brief recap of how disability concerns played a central role in the passage of the Baby Doe Rules is in order. In 1982 the national news media picked up the story of an infant in Indiana, referred to simply as Baby Doe.3 The newborn had been diagnosed as having Down syndrome and as suffering from a life-threatening blockage of its digestive tract. Although the latter condition could be easily corrected by surgery, the parents chose not to have the surgery performed, and as a result the infant died in less than a week.
The portrayal of an infant being permitted to starve to death, apparently because it had Down syndrome, prompted a public outcry. The Reagan Administration responded initially by promulgating regulations that treated hospitals' failure to provide life-saving treatment to infants with handicaps as a violation of section 504 of the Rehabilitation Act of 1973,4 which prohibits discrimination on the basis of handicap by recipients of federal funding. To make a long story short, this initial approach of deeming selective non-treatment to be a form of disability discrimination was struck down because, although the hospitals where disabled infants were born were subject
3. See John A. Robertson, Extreme Prematurity and Parental Rights after Baby Doe, hastings Center Rep., July-Aug. 2004, at 33.
4. 29 U.S.C. § 794 (2006).
to section 504's anti-discrimination mandate, it was the parents—not the hospitals—who made the decision whether to authorize the surgery or other treatment.5 The federal anti-discrimination law did not apply to parents' decisions.
In a second and more enduring effort to craft a legal response to Baby Doe's case, Congress set limits on parents' treatment decisions by amending federal child welfare laws that conditioned federal funding on state child welfare agencies' carrying out certain federally mandated responsibilities. The Child Abuse Amendments of 19846 are the Baby Doe Rules still in force today.
The essence of the disability rights case against permitting selective non-treatment in a case like Baby Doe's is straightforward. The choice not to treat that infant was based on the fact that the life saved would certainly be a life with a disability. The medical literature contained clear evidence that many doctors thought such choices appropriate because of the perceived low quality of life with a disability,7 and presumably the medical treatment choices of parents were influenced by this professional devaluing of life with physical and cognitive impairments.
Today, the area of greater challenge involves medical decisions for infants born very prematurely, at the margins of viability.8 Part of the challenge is to determine how the Baby Doe Rules should be interpreted to apply to these situations as a legal matter. But part of
5. Bowen v. Am. Hosp. Ass'n, 476 U.S. 610, 610-11, 630 (1986). In Bowen, a plurality of the Court held that the Department of Health and Human Services failed to justify the need for such regulations because the agency had not shown that hospitals were withholding medical treatment from "otherwise qualified" infants. Id. at 630. Because parents must consent to surgery or other treatment before medical providers could provide it, a lack of parental consent meant that disabled infants were not "otherwise qualified" to receive treatment and were not denied care "solely by reason of his handicap." Id. For a criticism of this reasoning, see Leslie Pickering Francis & Anita Silvers, (Mis)framing Schiavo as Discrimination against Persons with Disabilities, 61 U. MIAMI L. REV. 789, 797 (2007).
6. Pub. L. No. 98-457, 98 Stat. 1749 (codified as amended at 42 U.S.C. §§ 5101-5106i) (2006).
7. See, e.g., Raymond S. Duff & A.G.m. Campbell, Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. j. Med. 890, 893 (1973); Anthony Shaw et al., Ethical Issues in Pediatric Surgery: A National Survey of Pediatricians and Pediatric Surgeons, 60 pediatrics 588 (1977).
8. See, e.g., Robertson, supra note 3. See generally Sadath A. Sayeed, The Marginally Viable Newborn: Legal Challenges, Conceptual Inadequacies, and Reasonableness, 34 J. L. med. & ethics 600 (2006).
the challenge is to discern how disability concerns are implicated in these situations, and this Essay will focus on that question.
As a factual and prognostic matter, important distinctions exist between the original paradigmatic case of selective non-treatment of disabled newborns and situations involving very premature newborns. In a case like Baby Doe's, the parents and physicians knew at the time of the non-treatment decision that the infant, if he or she survived, would survive with a lasting disability whose nature, if not extent, was known. The treatment at issue was known to be effective in ameliorating a life-threatening condition, but would not eliminate the disability-producing impairment. In short, if the parents choose to treat, the infant will survive with a known disability.9
As several of the presentations at this symposium highlight, however, prognostic confidence in cases involving extremely premature newborns is substantially less.10 In many cases, it is uncertain whether the infant will survive even if treatment is provided. If the infant does...
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