Are There Checks and Balances on Terminating the Lives of Children With Disabilities? Should There Be?

• Citation: Vol. 25 No. 4
• Publication year: 2010

Georgia State University Law Review

Volume 25 , „

Article 2

Issue 4 Summer 2009

3-21-2012

Are There Checks and Balances on Terminating the Lives of Children with Disabilities? Should There Be?

Thomas J. Balch

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Recommended Citation

Balch, Thomas J. (2008) 'Are There Checks and Balances on Terminating the Lives of Children with Disabilities? Should There Be?," Georgia State University Law Review: Vol. 25: Iss. 4, Article 2. Available at: http://digitalarchive.gsu.edu/gsulr/vol25/iss4/2

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Balch: Are There Checks and Balances on Terminating the Lives of Childre

ARE THERE CHECKS AND BALANCES ON TERMINATING THE LIVES OF CHILDREN WITH DISABILITIES? SHOULD THERE BE?

Thomas J. Balch*

A person's right to reasonable notice of a charge against him, and an opportunity to be heard in his defense—a right to his day in court—are basic in our system of jurisprudence; and these rights include, as a minimum, a right to examine the witnesses against him, to offer testimony, and to be represented by counsel.¹

Introduction

Although the Child Abuse Amendments of 1984 set an objective standard of treatment for disabled infants with life-threatening conditions, by September 1989 a report of the U.S. Commission on Civil Rights concluded the following:

Surveys of health care personnel, the results of investigative reporting, the testimony of people with disabilities and their relatives, and the repeatedly declared views of physicians set forth in their professional journals all combine to persuade the Commission of the likelihood of widespread and continuing denials of lifesaving treatment to children with disabilities. . . . [E]vidence strongly suggests that the situation has not dramatically changed since the implementation of the Child Abuse Amendments of 1984 on October 1, 1985. . . . [C]lose working relationships among State child protective services agencies and members of the medical profession have resulted in

* Director, Robert Powell Center for Medical Ethics of the National Right to Life Committee; J.D., New York University School of Law, 1983.

1. In re Oliver, 333 U.S. 257,273 (1948).

2. Child Abuse Amendments of 1984, Pub. L. No. 98-457,98 Stat. 1749 (codified as amended at 42 U.S.C. §§ 5101-5106i (2006) and implemented in relevant part by 45 C.F.R. § 1340.15 (2008)).

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the substantial failure of many such agencies to enforce effectively the Child Abuse Amendments of 1984.³

There is little basis to believe that the last two decades have seen more, rather than less, widespread implementation of the standards in the 1984 law. In a 2005 article, physician and attorney Sadath Sayeed bluntly asserted "the striking incongruity between federally derived legal doctrine and normative medical practice" and concluded that "it should come as no surprise that professional adherence to federal policy remains a fiction in the United States ... On the contrary, it is apparent that instead resort has generally been had to the approach advocated by many ethicists and physicians: the use of ethics committees to consider initially controversial or questionable cases in which withholding or withdrawal of life-preserving medical treatment, food, or fluids from children with disabilities is contemplated.

While other articles in this symposium debate the standards incorporated in the Child Abuse Amendments of 1984, this article challenges this widely-promoted—and practiced—alternative. It raises the question whether the use of the ethics committee procedure, in theory and in practice, comports with fundamental norms of due process as they have been recognized in American jurisprudence.

I. The Prevalence of Ethics Committees

Hospital ethics committees have emerged as a common forum for resolving ethical disputes associated with life and death health care decisions.⁵ The rise of the ethics committee to serve in this powerful

3. U.S. Commission on Civil Rights, Medical discrimination Against Children with Disabilities 148-49 (1989). As a matter of full disclosure, the author served as an attorney-adviser for the commission, participating in the drafting of the report.

4. Sadath A. Sayeed, Baby Doe Redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: A Cautionary Note on Normative Neonatal Practice, 116 Pediatrics e576, e584 (2005).

5. "Although less than one percent of hospitals in the United States had an ethics committee in 1983, today eighty-four percent of large American hospitals have established such committees." Robin

capacity may be traced to an initial endorsement by the New Jersey Supreme Court in the highly popularized Karen Ann Quinlan case⁶ more than three decades ago.⁷ Since then, the use of hospital ethics committees has been bolstered by the support of a host of influential medical associations and regulatory entities. A federal regulatory scheme endorses them in cases involving health care decisions for infants.¹⁰ Two states have mandated the use of ethics committees within hospitals,¹¹ numerous other states have implicitly endorsed the practice of ethics committees by statutorily authorizing their

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involvement in particular health care decisions, and others have

Fretwell Wilson, Hospital Ethics Committees As the Forum of Last Resort: An Idea Whose Time Has Not Come, 76N.C. L. Rev. 353,356-57 (1997-1998).

6. In re Quinlan, 355 A.2d 647,668-69 (N.J. 1976).

7. See Randall B. Bateman, Attorneys on Bioethics Committees: Unwelcome Menace or Valuable Asset?, 9 J.L. & health 247, 249-250 (1995); Diane E. Hoffman, Regulating Ethics Committees in Health Care Institutions-Is It Time?, 50 md. l. rev. 746, 754 (1991); Bethany Spielman, Has Faith in Health Care Ethics Consultants Gone Too Far? Risks of an Unregulated Practice and a Model Act to Contain Them, 85 Marq. L. Rev. 161, 161 (2001) (all commenting that the emergence of hospital ethics committees was spurred initially by Quinlan).

8. See Susan M. Wolf, Ethics Committees and Due Process: Nesting Rights in a Community of Caring, 50 Md. L. Rev. 798, 799 n.10 (1991) (citing Judicial Council, American Medical Association, Guidelines for Ethics Committees in Health Care Institutions, 253 J. am. med. ass'n 2698 (1985), American Nurses' Association Committee on Ethics, Guidelines for Nurses' Participation And Leadership in Institutional Ethical Review Processes (American Nurses Association 1985), American Hospital Association, Guidelines: Hospital Committees on Biomedical Ethics (1984)).

9. See Gail J. Povar, Evaluating Ethics Committees: What do we Mean by Success?, 50 Md. L. Rev. 904,905-05 (1991) (citing the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (1983); The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions (1982); Guidelines Relating to Health Care for Handicapped Infants, 45 C.F.R. § 84 App. C (2005) [Povar cites 1984 edition of Guidelines]). See also Joint Commission on Accreditation of Healthcare Organizations, Comprehensive Accreditation Manual for Hospitals 66 (1995).

10. See HHS Model Guidelines for Health Care Providers to Establish Infant Care Review Committees, originally published at 50 Fed. Reg. 14,893 (Apr. 15, 1985), as authorized by amendments to the federal Child Abuse Prevention and Treatment Act, 42 U.S.C. §§ 5101-5117 (1988).

11. Md. Code Ann., Health-Gen. §§ 19-370 to 71 (LexisNexis 2008) (uses term "patient care advisory committee"); N.J. Admin. Code § 8:43G-5.1(h) (2009) ("multidisciplinary bioethics committee, and/or prognosis committee(s), or equivalents)").

12. Ariz. Rev. Stat. § 36-3231B (LexisNexis 2008); Colo. Rev. Stat. § 15-18.5-103(6.5) (2008); Del. Code Ann. tit. 16, § 2507(8) (2008); fla. Stat. Ann. § 765.401 (l)(h)(LexisNexis 2008); O.C.G.A. § 31-39-4(e)(2) (2008); Mass. Ann. Laws ch. 119, § 38A (LexisNexis 2008); Miss. code Ann. § 41-63-3 (2008); N.Y. Surr. Cr. Proc. Act. § 1750-b(5)(d) (Consol. 2009); Tex. Health & Safety Code Ann. § 166.046 (Vernon 2007); W. Va. Code Ann. § 16-30-5(d) (2008).

accorded immunity from liability to members of ethics committees.¹³ No longer serving in merely an advisory capacity, the hospital ethics committee has increasingly become the final decision maker for families in crisis about life or death decisions.¹⁴ With little or no judicial oversight, the hospital ethics committee has evolved into a quasi-legal entity, wielding enormous power. States have begun to immunize ethics committees and their members from liability through privilege and immunity statutes.¹⁵ At least one scholar has concluded that these statutes "maximize the authority of ethics committees while minimizing their accountability."¹⁶

Though it has been argued that the ethics committee's primary focus should be to "serve and protect the patient,"¹⁷ concerns have been expressed that they are more likely to serve as a "shield" for health care providers, reducing the risk of liability for actions that have been approved by them.¹⁸ while leaving the patient vulnerable. Susan Wolf argues:

Ethics committees are a due process wasteland. There is no indication that committees regularly offer patients any of the basic procedural protections such as notice, an opportunity to be heard, a chance to confront those in opposition, receipt of a written determination and a statement of reasons, and an opportunity to challenge that determination.... [T]he committee wields great influence over the treatment decision but accords no...