The Best Interests Standard for Incompetent or Incapacitated Persons of All Ages

President's Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society , presentation at the President's Council, Washington D.C., 2005. (The President's Council recommends setting aside the once competent patient's advanced directive if surrogates and clinicians judge that it is not in his or her best interest. This stance engendered controversy among the commissioners. I leave this dispute aside since it obviously does not arise for young children.) 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 284, no. 19 (2000): 2476–2482; Singer P. Martin D. Kelner M. , “Quality End-of-Life Care: Patients' Perspectives,” JAMA 281, no. 2 (1999); 163–168; National Hospice Organization, Standards of a Hospice Program of Care (Arlington, Virginia: National Hospice Organization, 1990); Byock I. R. Caplan A. Snyder L. , “Beyond Symptom Management: Physician Roles and Responsibilities in Palliative Care” in Snyder L. Quill T. E. , eds., Physician's Guide to End-of-life Care (Philadelphia: American College of Physicians, American Society of Internal Medicine, 2001): 56–71; Faull C. Carter Y. Daniels L. , Handbook of Palliative Care , 2nd ed. (Malden, Massachusetts: Blackwell Publishing, 2005); Lynn J. Schuster J. Kabcenell A. , Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians (New York: Oxford Press, 2000); Doyle D. Hanks G. Cherny N. Calman K. , Oxford Textbook of Palliative Medicine, 3rd ed. (Oxford: Oxford University Press, 2004): At Introduction, 1–4.

See President's Council on Bioethics, supra note 1.

Oh W. , L. Blackmon, and American Academy of Pediatrics' Committee on Fetus and Newborn, “The Initiation or Withdrawal of Treatment for High-risk Newborns,” Pediatrics 96, no. 2 (1995): 362–364; A. Kohram, E. Clayton, and American Academy of Pediatrics' Committee on Bioethics, “Guidelines on Foregoing Life-Sustaining Medical Treatment,” Pediatrics 93, no. 3 (1994): 532–536; American Academy of Pediatrics, Committee on Bioethics, “Ethics in the Care of Critically Ill Infants and Children,” Pediatrics 98, no. 1 (1996): 149–152; Nuffield Council on Bioethics, “Critical Care Decisions in Fetal and Neonatal Medicine: Ethical Issues,” London, November 2006, available at <http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_web_version_8_November.pdf> (last visited January 10, 2006).

U.S. Child Abuse Prevention and Treatment Act, (CAPTA) Pub L No. 42 USC 5101 et seq.

“Nondiscrimination on the Basis of Handicap; Procedures and Guidelines Relating to the Health Care for Handicapped Infants - HHS, Final Rules,” Federal Register 50 (1985): 14879–14892. (These amendments to CAPTA are known as the CAPTA OR “Baby Doe” amendments.)

Veatch R. M. , “Abandoning Informed Consent,” Hastings Center Report 25, no. 2 (1995): 5–12; Ruddick W. , “Questions Parents Should Resist,” in Kopelman L. M. Moskop J. C. , eds., Children and Health Care: Moral and Social Issues (Dordrecht: Kluwer Academic Publishers, 1989): At 221–230; Frader J. , Letter to the editor in response to Kopelman, “Are the 21-Year-Old ‘Baby Doe’ Rules Misunderstood or Mistaken?” Pediatrics 116 (2005): 1601–1602.

Krause H. D. , Family Law in a Nutshell, 2nd ed. (St. Paul: West Publishing Company, 1986).

Kopelman L. M. , “The Best Interests Standard as Threshold, Ideal, and Standard of Reasonableness,” Journal of Medicine and Philosophy 22, no. 3 (1997): 271–289.

See Kraus , supra note 7.

See Frader supra note 6; Reagan R. , “Abortion and the Conscience of the Nation” in Butler J. D. Walbert D. F. , eds., Abortion, Medicine and the Law, 3rd ed. (New York: Facts on File, 1986): At 352–358; Koop C. E. , “The Challenge of Definition,” Hasting Center Report 19, no. 1 (1989): 2–3.

Buchanan A. E. Brock D. W. , Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989).

See Kraus , supra note 7.

See Kopelman , supra note 8.

These critics include: Frader, supra note 10; Reagan , supra note 10; Koop , supra note 10; Veatch , supra note 6; Ruddick , supra note 6.

Kopelman L. M. , “Rejecting the ‘Baby Doe’ Regulations and Defending a ‘Negative’ Analysis of the Best Interests' Standard,” Journal of Medicine and Philosophy 30 (2005): 346.

See President's Council on Bioethics, supra note 1, p. 176.

See Kraus , supra note 7.

See Kopelman , supra notes 8 and 15.

Gustafson J. M. , “Mongolism, Parental Desires, and the Right to Life,” Perspectives in Biology and Medicine 17 (1973): At 529–530. Reprinted in Beauchamp T. L. Childress J. F. , eds., Principles of Biomedical Ethics, 1st ed. (New York: Oxford University Press, 1979): At 267–268.

See Hafemeister T. E. Hannaford P. L. , “Overview of the Decision-Making Process,” Resolving Disputesfor Life-Sustaining Treatment (Williamsburg: National Center for State Courts, 1996): At 15–20. They offer the following as frequently cited reasons given by the courts in deciding what is best in making medical decisions for an incompetent person: His or her diagnosis and prognosis and other objective medical criteria, the person's prognosis for suffering or enjoyment, and the likelihood that the person will have a tolerable quality of life. They write, “Often it is an almost intuitive determination that requires an evaluation of what a reasonable person in the patient's situation would want.” They also write that in judicial opinions the “…‘best interest’ incorporates what a reasonable person in the patient's position would want:” at 19 and 19n. The Nuffield Council, see supra note 3, offers similar criteria; also see the President's Council, supra note 1. This standard is used by the courts in other practical situations that do not require what is ideal but reasonable. For example, Krause, see supra note 7, discusses how it is used in custody disputes. It has also been used to interpret the research regulations such as in Grimes v. Kennedy Krieger Institute, Inc. 782 A. 2d 807, 366 Md. 20 (Court of Appeals of Maryland, 2001): At 852–853; and T.D. v. N.Y. State Office of Mental Health, 228 A.D.2d 95 (Court 1996). The courts acknowledge both the importance of the Best Interests Standard and that it cannot require what is ideal for the children in pediatric studies since that would have the effect of stopping research unless a case could be made that it is beneficial to each child; the courts and regulatory bodies allow non-therapeutic or “no benefit” studies that have a low risk. For a further discussion of this, see the following: Kopelman L. M. , “Pediatric Research Regulations Under Legal Scrutiny: Grimes Narrows Their Interpretation,” Journal of Law, Medicine & Ethics 30, no. 1 (2002): 38–49.

See President's Council on Bioethics, supra note 1, at 87.

See President's Council on Bioethics, supra note 1, at 56.

Aristotle R. McKeon , ed. Nichomachean Ethics, Book 2, The Basic Works of Aristotle, (New York: Randon House, 1941). Written 350 B.C.E. Existing rules about how we should treat others must be applied to the individual case. Aristotle's point is evident today as we must apply moral, scientific, and legal principles to individual cases. Moreover, our knowledge about how to treat human diseases and disorders is based upon scientific methods such as randomized clinical trial methodology that attempts to eliminate individual “nuisance variables” such as people's unique circumstances, biological responses, behaviors, and preferences. Yet these are the variables that should be considered in applying the standards of care to the individual case.

See President's Council on Bioethics, supra note 1, at 120.

See President's Council on Bioethics, supra note 1, at 231.

See President's Council on Bioethics, supra note 1, at 116.

See President's Council on Bioethics, supra note 1, at 173.

See President's Council on Bioethics, supra note 1, at 182.

See President's Council on Bioethics, supra note 1, at 116.

See President's Council on Bioethics, supra note 1, at 177.

See President's Council on Bioethics, supra note 1, at 212.

See President's Council on Bioethics, supra note 1, at 213.

See Oh , supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note 3.

See CAPTA or “Baby Doe” amendments, supra note 5. For a full statement of this policy, see Table 1.

See CAPTA, supra note 4.

See CAPTA or “Baby Doe” amendments, supra note 5. For a full statement of this policy, see Table 1.

Kopelman L. M. Kopelman A. E. Irons T. G. , “Neonatologists Judge the ‘Baby Doe’ Regulations,” New England Journal of Medicine 318, no. 11 (1988): 677–683; Kopelman L. M. Kopelman A. E. Irons T. G. , “Neonatologists, Pediatricians and the Supreme Court Criticize the ‘Baby Doe’ Regulations,” in Caplan A. L. Blank R. H. Merrick J. C. , eds., Compelled Compassion (Totowa, NJ: Humana Press, 1992): At 237–266; Kopelman L. M. , “Are the 21-Year-Old ‘Baby Doe’ Rules Misunderstood or Mistaken?” Pediatrics 116 (2005): 1601–1602.

See two articles by Kopelman , supra note 37.

Bowen v. American Hospital Association , 106 S. Ct. 2101 (1986).

“Nondiscrimination on the Basis of Handicap Relating to Health Care for Handicapped Infants—HHS, Final Rules,” Federal Register 49 (1984): 1622–1654.

U.S. Rehabilitation Act, Pub L No. 93–112, 29 USC 794.

See Bowen v. AHA, supra note 39.

Montalvo v. Borkovec, WI App 147; 256 Wis. 2d 472; 647 N. W. 2d 413 (2002).

See Oh , supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note 3; Nuffield Council, supra note 3.

See Montalvo v. Borkovec, supra note 43.

See President's Council on Bioethics, supra note 1.

See Oh supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note 3; the Nuffield Council, supra note 3.

See Reagan , supra note 10.

See Koop , supra note 10.

Murray T. H. , “The Final Anticlimactic Rule on ‘Baby Doe,’” Hastings Center Report 85, no. 15 (1985): 5–9; Robertson J. A. , “Extremely Prematurity and Parental Rights after ‘Baby Doe,’” Hasting Center Report 34, no. 4 (2004): 32–39.

See Bowen v. AHA, supra note 39; Montalvo, supra note 43.

See Reagan , supra note 10.

See Koop , supra note 10.

See American Academy of Pediatrics, supra note 3; Murray , supra note 50; Robertson , supra note 50.

See Kopelman , supra notes 6, 8, and 15; see also two papers by Kopelman , supra note 37.

See Kopelman , supra note 6, 8, and 15; See also two papers by Kopelman , supra note 37.

See two papers by Kopelman , supra note 37.

See President's Council on Bioethics, supra note 1; Steinhauser , supra note 1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

See President's Council on Bioethics, supra note 1; Steinhauser , supra note1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

See CAPTA or “Baby Doe” amendments, supra note 5.

See Oh , supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note 3; Nuffield Council, supra note 3; President's Council on Bioethics, supra note 1; Steinhauser , supra note 1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

See President's Council on Bioethics, supra note1.

See CAPTA or “Baby Doe” amendments, supra note 5.

See The President's Council on Bioethics, supra note 1, discussed a series of cases to illustrate the principles that they articulated at 182; Oh , supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note3; Nuffield Council, supra note 3.

See President's Council on Bioethics, supra note 1; Steinhauser , supra note 1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

See Oh , supra note 3; Kohram , supra note 3; American Academy of Pediatrics, supra note3; Nuffield Council, supra note 3; President's Council on Bioethics, supra note 1; Steinhauser , supra note 1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

The Supreme Court in Bowen v. AHA so judged the first set of rules and the neonatologists the second set. See the two papers by Kopelman , supra note 27 for arguments that both sets of “Baby Doe Rules” are substantially similar.

This analysis of the practical or “reasonable person” analysis of the Best Interests Standard seems compatible with judicial opinions. See for example Kraus, supra note 7 and Hafemeister , supra note 20.

See President's Council on Bioethics, supra note 1; Steinhauser , supra note 1; Singer , supra note 1; Standards of a Hospice Program of Care, supra note 1; Byock , supra note 1; Faull , supra note 1; Lynn , supra note 1; Doyle , supra note 1.

See President's Council on Bioethics, supra note 1, p.147.

See CAPTA or “Baby Doe” amendments, supra note 5.