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The Role of an Ethics Committee in Resolving Conflict in the Neonatal Intensive Care Unit

Published online by Cambridge University Press:  01 January 2021

Robert M. Nelson  and
Robyn S. Shapiro
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Extract

What should be the role of an institutional ethics committee (IEC) in resolving conflict concerning patient care decisions in the neonatal intensive care unit (NICU)? This question takes on added importance in light of recent court decisions which suggest that IEC deliberations may serve as persuasive evidence in court, of proposed state regulations that would establish an IEC as an alternative to judicial review, and of recent Joint Commission on Accreditation of Healthcare Organizations (JCAHO) guidelines that require an institutional policy on limitation or withdrawal of treatment to include a specified mechanism for resolving conflict. Unfortunately, despite these developments, prospective case consultation remains one of the most controversial and poorly understood aspects of IEC functions. Questions and concerns persist about the relation the IEC has and should have to actual decisions in specific cases.

We briefly examine the clinical, organizational, and regulatory complexity of the NICU environment and suggest five potential sources of uncertainty, disagreement, and conflict among parent(s) and NICU staff.

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Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 1 , Spring 1995 , pp. 27 - 32
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

Two recent cases, for example, are In re L.W., 482 N.W.2d 60 (Wis. 1992) and In re A.C., 573 A.2d 1235, 1237 n.2 (D.C. 1990). See discussion in Wolf, Susan M., “Toward a Theory of Process,” Law, Medicine & Health Care, 20 (1992): 279.CrossRefGoogle Scholar
The Maryland State Bar Association has proposed legislation that would allow an IEC to substitute for judicial review in cases involving the withdrawal of life-sustaining treatment from patients in a persistent vegetative state, as discussed in Hoffman, Diane E., “Regulating Ethics Committees in Health Care Institutions—Is it Time?,” Maryland Law Review, 50 (1991): 749–50. The New York State Task Force on Life and the Law initially proposed legislation that mandated IEC review and approval of all surrogate decisions to withhold or withdraw treatment in the absence of terminal illness or permanent unconsciousness. In response to concerns that such a mandate was intrusive and failed to address substantive standards for such decisions, the task force subsequently changed the recommended IEC review from prospective to retrospective and added substantive standards for such surrogate decisions (see infra notes 19 and 20 and accompanying text). The requirement for prospective IEC review remains in place for long-term care facilities. The IEC recommendation would be binding though subject to legal appeal in the presence of continued conflict. In addition, those who act in accordance with the IEC recommendation would be protected from civil and criminal liability. See New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients Without Capacity (Albany. Health Research Inc., 1992), pp. 254-55, 259, 262, 266; and New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients Without Capacity, Supplement to Report and Proposed Legislation (Albany: Health Research Inc., 1993), pp. 2-3. Although the establishment of IECs is discretionary, legislation in Hawaii provides broad legal protection for physicians who follow IEC recommendations. See Fleetwood, Janet Unger, Stephanie S., “Institutional Ethics Committees and the Shield of Immunity,” Annals of Internal Medicine, 120 (1994): 320. For a response to Fleetwood and Unger's comments on the New York State Task Force initiative, see Miller, Tracy E. Mackler, Aaron L., “Ethics Committees,” Annals of Internal Medicine, 121 (1994): 725; and Fleetwood and Unger's responses, Annals of Internal Medicine, 121 (1994): 725.Google Scholar
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Harrison, , supra note 7, p. 644, asserts that parents “have a right to know about relevant differences of medical and ethical opinion among the hospital professionals or within the medical community in general.” What makes a difference of opinion “relevant” to the parent, rather than simply an intrusion? Given the apparent disparity between parents’ and health professionals’ attitudes, do parents really want to hear about any or all differences of opinion among NICU staff? Lee and co-workers documented a significant disparity among the attitudes of NICU parents when compared with those of NICU nurses and pediatricians. See Lee, Shoo K. Penner, Pauline L. Cox, Margaret, “Comparison of the Attitudes of Health Care Professionals and Parents Toward Active Treatment of Very Low Birth Weight Infants,” Pediatrics 88 (1991): 110–14. Note also the conclusion of Pinch, Spielman, , supra note 7, p. 717: “A chasm apparently exists between the health professional's perspective of the ethical dimension of neonatal care and the parent's perspective of ethical issues.”Google Scholar
See Wolf, , supra note 1, pp. 280, 283. For example, in Wisconsin, the statutory definition of neglect includes “failure, refusal or inability on the part of a parent, guardian, legal custodian or other person expressing temporary or permanent control over a child … to provide necessary … medical or dental care … so as to seriously endanger the physical health of the child” (Wis. Stat., § 48.981(1)(d)).Google Scholar
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Although a decision to withhold or withdraw treatment in the absence of terminal illness, permanent coma, or inhumane treatment would be subject to IEC review, the IEC may decide to support such a decision. The potential for an IEC to allow apparent quality-of-life considerations was criticized by some as undercutting the intent of the 1984 Child Abuse Amendments. See, for example, United States Commission on Civil Rights, Medical Discrimination Against Children with Disabilities (Washington, D.C.: U.S. Commission on Civil Rights, 1989).Google Scholar
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For example, In re L.W., 482 N.W.2d 60 (Wis. 1992); and In re A.C., 573 A.2d 1235, 1237 n.2 (D.C. 1990).Google Scholar
For example, In the Matter of Peter, Hilda M., 108 N.J. 365, 529 A.2d 419 (1987); In the Matter of Claire Conroy, 98 N.J. 321, 486 A.2d 1209 (1985); and In the Matter of the Welfare of Bertha Colyer, 99 Wash. 2d 114, 660 P.2d 738 (1983).Google Scholar
For example, In the Matter of Baby “K”, 832 F. Supp. 1022 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir. 1994), cert. denied, 115 S. Ct. 91 (1994).Google Scholar
Hoffman, , supra note 2, p. 767; and Wolf, , supra note 1, p. 287. We found no language suggesting that an IEC may substitute for judicial review in the presence of conflict among the parties to the dispute. As Hoffman discusses, Maryland law requires judicial review of termination of treatment for patients in a persistent vegetative state. The legislative proposal that would allow for an IEC to substitute for judicial review assumes that the IEC and family are in agreement Presumably, the presence of conflict would lead to either continued treatment or judicial review. Absent conflict, we agree that a case does not need judicial review; however, we would remove the requirement for review rather than establish an IEC as a substitute for that review.Google Scholar
Wolf, , supra note 1, p. 284.Google Scholar