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

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.

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.

See §§ RI.1.1.6.1 and RI.2.2.2 in the Joint Commission on Accreditation of Healthcare Organizations, 1994 Accreditation Manual for Hospitals (Oakbrook Terrace: JCAHO, Vol. I, 1993), pp. 156–57; and the Joint Commission on Accreditation of Healthcare Organizations, 1994 Accreditation Manual for Hospitals (Oakbrook Terrace: JCAHO, Vol. II, 1993), pp. 10, 14–15. The JCAHO guidelines do not specify who or how this role of conflict resolution should be fulfilled, although an IEC is often the mechanism proposed as, for example, in the New York State Task Force report (see New York State Task Force on Life and the Law (1992), supra note 2, p. 262).

The literature on prospective case consultation is large and growing. For recent discussions of the consultative role of an IEC, see Moreno Jonathan D. , “Institutional Ethics Committees: Proceed with Caution,” Maryland Law Review, 50 (1991): 895–903; Povar Gail J. , “Evaluating Ethics Committees: What Do We Mean By Success?,” Maryland Law Review, 50 (1991): 912–19; and Wolf Susan M. , “Ethics Committees and Due Process: Nesting Rights in a Community of Caring,” Maryland Law Review, 50 (1991): 801–06, 813–31.

The literature examining NICU practices over the last two decades is immense. For example, see Duff Raymond S. Campbell Anthony G.M. , “Moral and Ethical Dilemmas in the Special Care Nursery,” N. Engl. J. Med., 289 (1973): 890–94; Swinyard Chester A. , ed., Decision Making and the Defective Newborn: Proceedings of a Conference on Spina Bifida and Ethics (Springfield: Charles C. Thomas, 1978); Lantos John D. , “Survival after Cardiopulmonary Resuscitation in Babies of Very Low Birth Weight: Is CPR Futile Therapy?,” N. Engl. J. Med., 318 (1988): 91–95; Schlomann Pamela , “Ethical Considerations of Aggressive Care of Very Low Birth Weight Infants,” Neonatal Network, 11 (1992): 31–36; Young Ernie W. Stevenson David K. , “Limiting Treatment for Extremely Premature, Low-Birth-Weight Infants (500 to 750 g),” American Journal of the Diseases of Children, 144 (1990): 549–52; Peabody J.L. Emery J.R. Ashwal S. , “Experience with Anencephalic Infants as Prospective Organ Donors,” N. Engl. J. Med., 321 (1989): 344–50; and Annas George J. , “Asking the Courts to Set the Standard of Emergency Care—The Case of Baby K,” N. Engl. J. Med., 330 (1994): 1542–45.

Recent technological developments in the NICU include extracorporeal membrane oxygenation, inhaled nitric oxide, high frequency ventilation, and artificial surfactant therapy. See, for example, Wildin S.R. Landry S.H. Zwischenberger J.B. , “Prospective, Controlled Study of Developmental Outcome in Survivors of Extracorporeal Membrane Oxygenation: The First 24 Months,” Pediatrics, 93 (1994): 404–08; Carter J.M. , “High-Frequency Oscillatory Ventilation and Extracorporeal Membrane Oxygenation for the Treatment of Acute Neonatal Respiratory Failure,” Pediatrics, 85 (1990): 159–64; Finer N.N. , “Inhaled Nitric Oxide in Infants Referred for Extracorporeal Membrane Oxygenation: Dose Response,” Journal of Pediatrics, 124 (1994): 302–08; Lotze A. , “Improved Pulmonary Outcome after Exogenous Surfactant Therapy for Respiratory Failure in Term Infants Requiring Extracorporeal Membrane Oxygenation,” Journal of Pediatrics, 122 (1993): 261–68; Schwartz R.M. , “Effect of Surfactant on Morbidity, Mortality, and Resource Use in Newborn Infants Weighing 500 to 1500 g,” N. Engl. J. Med., 330 (1994): 1476–80; and Jobe Alan H. , “Pulmonary Surfactant Therapy,” N. Engl. J. Med., 328 (1993): 861–68.

Harrison Helen , “The Principles for Family-Centered Neonatal Care,” Pediatrics, 92 (1993): 643. By way of contrast, however, Pinch and Spielman found, during interviews with thirty-two families with infants in a NICU, that: “Parents, when specifically asked about their role in treatment decisions for the neonate, stated that there was no decision-making required or that they were not involved in the process of decision-making in the majority of situations…. There were few negative feelings shared relative to decision-making and its ethical dimensions but rather in the majority of the families, acceptance and gratefulness characterized their perception of the situation.” See Pinch Winifred J. Spielman Margaret L. , “The Parents' Perspective: Ethical Decision-Making in Neonatal Intensive Care,” Journal of Advanced Nursing, 15 (1990): 715.

Concerning the Baby Doe regulations, see, for example, York G.Y. Gallarno R.M. York R.O. , “Baby Doe Regulations and Medical Judgment,” Social Science and Medicine, 30 (1990): 657–64; Lantos John , “Baby Doe Five Years Later. Implications for Child Health,” N. Engl. J. Med., 317 (1987): 444–47; and Stevenson David K. , “The ‘Baby Doe’ Rule,” JAMA, 255 (1986): 1909–12. Concerning the cost of NICU care, see, for example, Phibbs Ciaran S. , “Cost Effects of Surfactant Therapy for Neonatal Respiratory Distress Syndrome,” Journal of Pediatrics, 123 (1993): 953–62; Imershein A.W. , “Covering the Costs of Care in Neonatal Intensive Care Units,” Pediatrics, 89 (1992): 56–61; Klem S.A. Pollack M.M. Getson P.R. , “Cost, Resource Utilization, and Severity of Illness in Intensive Care,” Journal of Pediatrics, 116 (1990): 231–37; Shankaran S. , “Medical Care Costs of High-Risk Infants after Neonatal Intensive Care: A Controlled Study,” Pediatrics, 81 (1988): 372–78; and Walker D.J. Vohr B.R. Oh W. , “Economic Analysis of Regionalist Neonatal Care for Very Low-Birth-Weight Infants in the State of Rhode Island,” Pediatrics, 76 (1985): 69–74.

See Kopelman L.M. Irons T.G. Kopelman A.E. , “Neonatologists Judge the ‘Baby Doe’ Regulations,” N. Engl. J. Med., 318 (1988): 677–83.

Harrison , supra note 7, p. 647: “We reject the notion that our children are well-served by laws mandating life-sustaining treatment without regard to pain and quality of life…. Medical treatment of critically ill newborns should be driven by compassion and dedication to the welfare of these children and their families, not fear of politically motivated and poorly drafted laws.”

See Bopp James Jr. Coleson R.E. , “Baby K: Protected at Law,” Trends in Health Care Law and Ethics, 9 (1994): 7–12; and Annas , supra note 5. For discussion of the impact of the Americans with Disabilities Act on the provision of medical care, see Halevy A. Brody B. , “Acquired Immunodeficiency Syndrome and the Americans with Disabilities Act: A Legal Duty to Treat,” American Journal of Medicine, 96 (1994): 282–88; and Orentlicher David , “Rationing and the Americans with Disabilities Act,” JAMA, 271 (1994): 308–14. We do not discuss the use of the term futile to describe medical intervention, along with the implication that such a description may be used to argue for the withholding of such intervention from a patient regardless of patient or surrogate wishes. We only note that the term is used, in fact, by physicians to designate treatments that they would prefer not to provide.

For example, see Hack Maureen , “School-Age Outcomes in Children with Birth Weights Under 750 g,” N. Engl. J. Med., 331 (1994): 753–59; and comment by McCormick Marie C. , “Survival of Very Tiny Babies—Good News and Bad News,” N. Engl. J. Med., 331 (1994): 802–03. See also references concerning cost of NICU care, supra note 8.

We agree with Waldron's observation that “I would estimate that over half of the cases on which the committee was consulted entailed helping the parties involved communicate more effectively with each other.” See Waldron Edward E. , “Ethics Committees, Decision-Making Quality Assurance, and Conflict Resolution,” Journal of Clinical Ethics, 3 (1992): 290–91.

Conflict between physicians and nurses concerning ethical issues has been well documented. See Anspach Renée R. , “Prognostic Conflict in Life-and-Death Decisions: The Organization as an Ecology of Knowledge,” Journal of Health and Social Behavior, 28 (1987): 215–31; Gramelspacher Gregory P. Howell Joel D. Young Mark J. , “Perceptions of Ethical Problems by Nurses and Doctors,” Annals of Internal Medicine, 146 (1986): 577–78; Prescott Patricia A. Bowen Sally A. , “Physician-Nurse Relationships,” Annals of Internal Medicine, 103 (1985): 127–33; and Miya Pamela A. , “Ethical Issues Described by NICU Nurses,” Journal of Clinical Ethics, 2 (1991): 253–57.

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.”

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)).

See Harrison , supra note 7, pp. 644–45.

See Tomlinson Tom Brody Howard , “Futility and the Ethics of Resuscitation,” JAMA, 264 (1990): 1276–80.

For treatment to be withdrawn in the absence of terminal illness or permanent unconsciousness, it would need to “involve such pain or suffering or other burden that it would reasonably be deemed inhumane or extraordinary” (New York State Task Force (1993), supra note 2, pp. 2, 18). See Department of Health and Human Services, “Child Abuse and Neglect Prevention and Treatment Program; Final Rule,” Federal Register, 45 C.F.R. Pt. 1340 (Apr. 15, 1985): 14878–92. See supra, notes 8–10 and accompanying text.

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).

See Blum Lawrence A. , “Moral Perception and Particularity,” in Moral Perception and Particularity (New York: Cambridge University Press, 1994), pp. 30–61.

Fletcher John C. , “Ethics Committees and Due Process,” Law, Medicine & Health Care, 20 (1992): 291.

Cohen Cynthia B. , “Avoiding ‘Cloudcuckooland’ in Ethics Committee Case Review: Matching Models to Issues and Concerns,” Law, Medicine & Health Care, 20 (1992): 294–99. See also Moreno , supra note 4; Povar , supra note 4; and Wolf , supra note 4.

Wolf , supra note 1, pp. 279–85; and Hoffman , supra note 2, pp. 765–67.

See Cohen , supra note 23, pp. 294–95; and West Mary Beth Gibson Joan McIver , “Facilitating Medical Ethics Case Review: What Ethics Committees Can Learn from Mediation and Facilitation Techniques,” Cambridge Quarterly of Healthcare Ethics, 1 (1992): 70. A recent proposal for mediating bioethical disputes in clinical settings involves three main features: (1) an emphasis on mediation and not adjudication or arbitration; (2) the neutrality of the mediator; and (3) the importance of consensus. See Dubler Nancy N. Marcus Leonard J. , Mediating Bioethical Disputes (New York: United Hospital Fund, 1994), pp. ix, 7–8, 51–52. We agree with the emphasis on mediation and consensus; however, we prefer to use the term openness rather than neutrality to describe the attitude of the IEC consultant(s). Our use of the term openness may be similar to that of perceived neutrality; however, being “open” implies a sincere willingness to consider all viewpoints rather than simply an instrumental desire to be “perceived as open” so to facilitate a resolution. We are also concerned that starting the process of mediation with the medical and nursing professionals under the guise of getting the medical “facts” clear risks privileging their interpretation of the situation and placing parent(s) at a disadvantage. See Dubler Marcus , id., pp. 35–37.

Wolf , supra note 1, pp. 278, 282.

Moreno , supra note 4, p. 896; and Hoffman , supra note 2, p. 764. Research on group process suggests that emphasis on consensus in combination with a dominant personality may lead to failure to consider all perspectives and thus “groupthink.” See, for example, Park Won-Woo , “A Review of Research on Groupthink,” Journal of Behavioral Decision Making, 3 (1990): 229–45; and McCauley Clark , “The Nature of Social Influence in Groupthink: Compliance and Internalization,” Journal of Personality & Social Psychology, 57 (1989): 250–60.

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).

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).

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).

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.

Wolf , supra note 1, p. 284.