Infancy

Alicia Ouellette

doi:10.1017/CBO9780511978463.005

3 - Infancy

Published online by Cambridge University Press: 07 June 2011

Alicia Ouellette

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Alicia Ouellette: Affiliation:
Albany Law School

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Summary

A newborn baby is a tiny bundle of potential whose arrival is often met with joy and wonder. The arrival of a baby born with a disability or a health condition that may result in disabilities can generate more complicated reactions. To be sure, some parents welcome a baby with disabilities with the same joy and wonder as they would any other child. Indeed some parents celebrate the arrival of a child with traits like deafness and achondroplasia as special blessings foretelling a life that will be enriched by the special trait. For many families, however, the realization that an infant has or might develop disabilities brings with it concern, fear, even grief. Whatever the parental reaction, the presence or potential for disability in an infant often means the need for medical decision making. Most decisions made for infants with disabilities are about routine matters, but some are quite literally a matter of life or death. As is evident in the case studies that follow, making decisions about when to use or refuse life-saving treatments for infants with disabilities can be wrenching regardless of parental or analytic perspective.

The law provides some guidance. The advent of the modern neonatal intensive care unit (NICU) in the 1970s brought with it an ever-increasing ability to save the lives of babies facing life-threatening crises. As options for saving imperiled newborns increased, the public's interest in medical protocols that allowed babies to die also increased.

Type: Chapter
Information: Bioethics and Disability
Toward a Disability-Conscious Bioethics
, pp. 72 - 136

DOI: https://doi.org/10.1017/CBO9780511978463.005 [Opens in a new window]

Publisher: Cambridge University Press

Print publication year: 2011

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References

Duff, Raymond S. & Campbell, A. G. M., Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890, 894 (1973)CrossRef Google Scholar PubMed

Shaw, , et al., Ethical Issues in Pediatric Surgery: A National Survey of Pediatricians and Pediatric Surgeons, 60 Pediatrics588, 590, Table 4 (1977)Google Scholar PubMed

Lantos, John & Meadow, William, Neonatal Bioethics: The Moral Challenges of Medical Innovation, 70 (Johns Hopkins University Press 2009)Google Scholar

Sayeed, Sadath A., The Marginally Viable Newborn: Legal Challenges, Conceptual Inadequacies, and Reasonableness, 34 J. L. Med. & Ethics600 (2006)CrossRef Google Scholar PubMed

Conway, Craig A., Baby Doe and Beyond: Examining the Practical and Philosophical Influences Impacting Medical Decision-Making on Behalf of Marginally-Viable Newborns, 25 Ga. St. U. L. Rev. 1097 (2009)Google Scholar

Winslade, William J., Personal Reflections on Extremely Premature Newborns: Vitalism, Treatment Decisions, and Ethical Permissibility, 25 Ga. St. U. L. Rev. 931, 938 (2009)Google Scholar

Annas, George J., Extremely Preterm Birth and Parental Authority to Refuse Treatment – The Case of Sidney Miller, 351 New Eng. J. Med. 2118 (2004)CrossRef Google Scholar PubMed

Murray, Thomas H. & Caplan, Arthur L., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Humana Press 1985)Google Scholar

Scott, Charity, Baby Doe at Twenty-Five, 25 Ga. St. U. L. Rev. 801 et seq. (2009)Google Scholar

Miller, Geoffrey, Extreme Prematurity: Practices, Bioethics, & the Law (Cambridge University Press 2006)CrossRef Google Scholar

Kipnis, Kenneth, Harm and Uncertainty in Newborn Intensive Care, 28 Theoretical Medicine and Bioethics393 (2007)CrossRef Google Scholar PubMed

Kipnis, Ken, Harm and Uncertainty in Newborn Intensive Care, 28 Theor. Med. Bioeth. 393, 393–12 (2007)CrossRef Google Scholar PubMed

Jacobs, Harris C., The Texas Advance Directives Act – Is It a Good Model?, 33 Seminars In Perinatology384, 388 (2009)CrossRef Google Scholar PubMed

Field, Martha A., Killing “the Handicapped” – Before and After Birth, 16 Harv. Women's L. J.79, 88 (1993)Google Scholar PubMed

Werth, James L., Concerns about Decisions Related to Withholding/Withdrawing Life-sustaining Treatment and Futility for Persons with Disabilities, 16 J. Disability Pol'y Stud. 31, 33 (2005)Google Scholar

Menzel, Paul T., Oregon's Denial: Disabilities and Quality of Life, 22 Hastings Center Rep., Nov.–Dec. 1992, at 21CrossRef Google Scholar PubMed

Rosenbaum, Sara, The Americans with Disabilities Act in a Health Care Context, inInstitute of Medicine: The Future of Disability in America 426 (Field, Marilyn Jane & Jette, Alan M. eds., National Academies Press 2007)Google Scholar

Gill, Carol J., No, We Don't Think Our Doctors Are Out to Get Us: Responding to the Straw Man Distortions of Disability Rights Arguments against Assisted Suicide, 3 Disability & Health J.31, 36 (2010)CrossRef Google Scholar PubMed

Field, Martha A., Killing “The Handicapped” – Before and After Birth, 16 Har. Women's L. J.79, 100 (1993)Google Scholar PubMed

Crossley, Mary A., Medical Futility and Disability Discrimination, 81 Iowa L. Rev. 179, 182 (1995)Google Scholar

Peters, Philip G., When Physicians Black at Futile Care: Implications of the Disability Rights Laws, 91 Nw. U. L. Rev.798, 817 (1997)Google Scholar

Beauchamp, Tom L. & Childress, James F., Principles of Biomedical Ethics 167–8, 220–1, 278 (6th ed., Oxford University Press 2009)Google Scholar

Daar, Judith F., A Clash at the Bedside: Patient Autonomy v. a Physician's Professional Conscience, 44 Hasting L. J. 1241, 1248–9 (1993)Google Scholar

Bedell, Susanna E. et al., Survival after Cardiopulmonary Resuscitation in the Hospital, 309 New Eng. J. Med. 569 (1983)CrossRef Google Scholar PubMed

Blackhall, Leslie J., Must We Always Use CPR?, 317 New Eng. J. med. 1281 (1987)CrossRef Google Scholar PubMed

Gray, William A. et al., Unsuccessful Emergency Resuscitation – Are Continued Efforts in the Emergency Department Justified?, 325 New Eng. J. Med. 1393 (1991)CrossRef Google Scholar PubMed

Taffet, George E., et al., In-Hospital Cardiopulmonary Resuscitation, 260 J. Am. Med. Ass'n2069 (1988)CrossRef Google Scholar PubMed

Dahm, Lisa L., Medical Futility and the Texas Medical Futility Statute: A Model to Follow or One to Avoid?, 6 Health Law. 25 (2008)Google Scholar

Pope, Thaddeus M., Involuntary Passive Euthanasia in U.S. Courts: Reassessing the Judicial Treatment of Medical Futility Cases, 9 Marq. Elder's Advisor229 (2008)Google Scholar

Ouellette, Alicia R., Quill, Timothy, Swidler, Robert, Pope, Thaddeus Mason, & Dubler, Nancy, A Conversation About End-of-Life Decisionmaking, 14 NYSBA Health L.J., Fall 2009, at 91Google Scholar

Brody, Howard, Medical Futility: a Useful Concept?, inMedical Futility and the Evaluation of Life-Sustaining Interventions 1, 3 (Zucker, Marjorie B. & Zucker, Howard D. eds., Cambridge University Press 1997)Google Scholar

Tomlinson, Tom & Brody, Howard, Futility and the Ethics of Resuscitation, 264 J. Am. Med. Ass'n1276, 1278–1279 (1990)CrossRef Google Scholar

Fine, Robert L. & Mayo, Thomas W., Resolution of Futility by Due Process: Early Experience with the Texas Advance Directives Act, 138 Annals Internal Med. 743 (2003)CrossRef Google Scholar PubMed

Fine, Robert L., Medical Futility and the Texas Advance Directives Act of 1999, 13 Baylor U. Med. Center Proc., April 2000, at 144, 146Google Scholar PubMed

Caplan, Arthur L., Editorial, Odds and Ends: Trust and the Debate over Medical Futility, 125 Annals Internal Med., Oct. 15, 1996, 688CrossRef Google Scholar PubMed

Lantos, John D., & Meadow, William L., Neonatal Bioethics: The Moral Challenges of Medical Innovation 7 (Johns Hopkins University Press 2006)Google Scholar

Koch, Tom, The Difference That Difference Makes: Bioethics and the Challenge of “Disability”, 29 J. Med. & Phil. 697 (2004) (arguing the Peter Singer's utilitarian ethos is the dominant thread in a bioethics focused on autonomy)CrossRef Google Scholar PubMed

Koch, Tom, The Difference That Difference Makes: Bioethics and the Challenge of “Disability”, 29 J. Med. & Phil. 697, 700–703 (2004) (tracing theoretical roots of bioethics to Singer)CrossRef Google Scholar PubMed

Lantos, John & Meadow, William, Neonatal Bioethics: The Moral Challenges of Medical Innovation, 10, 92 (Johns Hopkins University Press 2006) (describing an approach of treating until the baby “declares self”)Google Scholar