The famous Baby Doe case involved a baby born with a tracheoesophageal fistula and esophageal atresia. The baby’s parents and physicians opted not to correct these incompatible-with-life defects because the baby also was born with Down syndrome. Another Baby Doe born with a severe meningomyelocele was deprived food and water at her parents’ request and with the physician’s approval even though she could take food by mouth.
Both babies died of dehydration, but the first baby’s dehydration resulted from birth defects. The second baby’s dehydration was induced by the parents and physicians.
These cases raise complex issues:
€. Because the first baby was born with lethal though correctable defects, the parents were allowed to decide whether their child with Down syndrome would live or die. Are mentally handicapped newborns entitled to the same care and treatment as infants born without a mental handicap? If not, what does this mean for people at any age who have Down syndrome or any condition that impairs mental function?
€. If a decision not to treat such infants is acceptable, how does one justify using dehydration instead of more merciful means?
€. When medical or surgical intervention offers no meaningful hope for life, what options are-or should be-available to parents and professionals?
Philosophical foundations for infanticide
The usual arguments for mercy killing, non-treatment, and direct killing of adults don’t apply to neonates. The crux of the argument for mercy killing, non-treatment, or direct killing of infants is that, handicapped or not, they aren’t fully human. Thus, killing them isn’t the equivalent of killing a human. But because they are potentially human, neonates aren’t without value, and their killing should be neither random nor arbitrary.
This line of thinking started with Joseph Fletcher’s 1972 article, “Indicators of humanhood: A tentative profile of man,€VbCrLf and has been augmented by the work of several philosophers. Fletcher’s criteria for “humanhood€VbCrLf include:
€. minimal intelligence (an IQ of 40 is questionably human, an IQ of 20 is nonhuman)
€. self-awareness
€. self-control
€. a sense of time
€. a sense of futurity
€. a sense of the past
€. the capability to relate to others
€. concern for others
€. communication
€. control of existence
€. curiosity
€. change and changeability
€. balance of rationality and feeling
€. idiosyncrasy
€. neocortical function.
Because neonates don’t meet these criteria, according to this line of reasoning, the “€¦ termination of an infant’s life in the first few months following extraction from the womb could not be looked upon as murder€VbCrLf or even mercy killing.
Birth of the Baby Doe Regulations
Reacting to the highly publicized Baby Doe cases and to this type of thinking, the Reagan Administration formulated the Baby Doe Regulations in 1984, making the withholding of neonatal intensive care on the basis of handicap-or increased risk of handicap-a violation of the Rehabilitation Act of 1973. Threatened by the loss of federal funds, hospitals were required to post signs with the phone number of a Baby Doe Hotline, so anyone could report cases of non-treatment. These reports were to be investigated immediately by Baby Doe Squads that interrogated physicians, nurses, and others. A storm of protest followed. Then, in 1986, the U.S. Supreme Court struck down these regulations on the grounds that the Rehabilitation Act didn’t apply to the medical care of handicapped infants.
In the interim, Congress passed the Child Abuse and Treatment Act of 1984-also called the revised Baby Doe Regulations-which defined the withholding of medically indicated treatment as child abuse. The act requires medical treatment except when it’s futile. Treatment is considered futile when an infant is chronically or irreversibly comatose, treatment would “merely prolong dying,€VbCrLf or treatment would be both “virtually futile in terms of survival of the infant€VbCrLf and “inhumane.€VbCrLf
What is futile treatment?
The terms “futile,€VbCrLf “virtually futile,€VbCrLf and “inhumane€VbCrLf are only vaguely defined in the legislation, making the Child Abuse and Treatment Act difficult to interpret in clinical practice. Determining if medical care is futile requires clinical judgment based on an analysis of the circumstances and a projection of the likely outcome. Futility became a decision-making criterion because it offered a definable interpretation of the patient’s good.
More recently, the legal doctrine of informed consent established the patient’s (or the surrogate’s) right to participate in decision making, particularly when death may result. Thus, the physician decides what can be done, but the patient (or surrogate) makes the value decision about what will or will not be done. As a nurse, you may be involved in supporting and counseling the parents, providing them with information, and helping them deal with the consequences of their decisions.
All clinicians and parents know that at some point treatment is no longer warranted and may cause unnecessary suffering. To continue treatment in such circumstances violates the first and second principles of medical ethics: Do no harm and Act in the best interests of the patient. If the futile treatment is painful, offering or continuing its use is cruel and is the opposite of the beneficence demanded by these two principles that form the moral center of the healing relationship.
Yet, given the first Baby Doe Regulations and the vague wording of the revised Regulations, neonatologists may err on the side of over-treatment, even to the point of cruelty. The absence of a precise definition of futility, the advances in medicine, and the potential legal repercussions for physicians have contributed to over-treatment.
Is over-treatment the norm?
Today, some clinicians believe that over-treatment of even the most severely handicapped infant has become the norm. In response to this situation, some philosophers and clinicians now call for a repeal of the Child Abuse and Treatment Act, so parents and clinicians will have the freedom to make decisions within the privacy of the patient-physician relationship.
But not everyone agrees. In 1997, a study was undertaken to determine the frequency of selective non-treatment of extremely premature, critically ill, or malformed infants among all infant deaths in an intensive care nursery (ICN) and to determine the reasons documented by neonatologists for the decisions to withdraw or withhold life support. The descriptive study was based on a review of the medical records of infants who died at a university-based level III ICN during a 3-year period.
The study found that of the 1,609 infants admitted, 165 died. Of the 165 deaths, 108 followed the withdrawal of life support, 13 followed the withholding of treatment, and 44 occurred during maximum life-sustaining treatment. For 90 (74%) of the 121 deaths from withholding or withdrawing treatment, physicians cited death as imminent and treatment as futile. However, quality-of-life concerns were cited as reasons to limit treatment in 62 (51%) of the cases. And quality of life was the only reason cited for limiting treatment for 28 (23%) of the 121 deaths attributed to withholding or withdrawing treatment.
The researchers concluded that most deaths in the ICN resulted from selective non-treatment. Neonatologists often documented that quality-of-life concerns were considered in decisions to limit treatment, even though the majority of these decisions were based on the belief that treatment was futile.
Palliative care for dying neonates
A 2003 Institute of Medicine report, “When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families,€VbCrLf says that 34% of childhood deaths occur in the neonatal period. Of course, most occur in the neonatal intensive care unit (NICU).
The fact that an infant is dying doesn’t change the focus of care for NICU nurses and physicians. They still act in the patient’s best interest. NICU nurses work hard to create an environment that provides high-tech and high-touch, family-friendly care. Focusing on the quality of life as determined by a culturally sensitive, negotiated, family-centered approach significantly improves the quality of life for the tiny patient and his family. As nurses help transform the parent’s grief and pain into comfort and mutual support, they too find satisfaction.
Though most hopelessly ill neonates die fairly soon after the withdrawal of life-sustaining measures, some survive for an extended period. In these cases, having hospice personnel provide palliative care in the home may be the best alternative. If so, a neonatal nurse educator may need to teach hospice personnel, who are expert at caring for dying adults, about caring for dying infants. Babies present special needs, including normal newborn care, skilled pain management, care of the skin and mucous membranes, and care for dyspnea, nausea, and seizures.
Final thoughts
Most questions raised by these situations can’t be answered in one article, if they can be answered at all. Does a newborn have the moral worth of an adult? Indeed, what is it that gives a person worth? Is it intrinsic? Does one have to earn it? Philosophers may quibble about whether or not infants achieve “humanhood,€VbCrLf but who could argue that an infant isn’t a human being with human rights? No matter how small and underdeveloped, a newborn deserves kindness and physical care, and the newborn’s family deserves emotional support.
If the research can be believed, the revised Baby Doe Regulations aren’t overly burdensome and do prevent the abuses represented by the Baby Doe cases. Therefore, the law should remain as written for the time being.
As for your role, you should help facilitate a careful, modest, open sharing of information that allows parents to make decisions. If they have concerns, a review by an ethics committee should alleviate them.
Nurses who participate in palliative care for a dying infant give an inestimable gift to baby and parents alike. The choice parents and clinicians face doesn’t have to be between torturing with ineffective treatment and killing by dehydration. When death is inevitable, providing gentle palliative care is the ethical alternative. Medical treatment may be futile: Nursing care never is!
Selected references
Carter BB. Comfort care principles for the high-risk newborn. NeoReviews. 2004;5(11):493.
Fletcher J. Indicators of humanhood: a tentative profile of man. Hastings Cent Rep. v.2 #5, November 1972.
Institute of Medicine of the National Academies. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: Institute of Medicine; 2003.
Pellegrino E. Decisions at the end of life: the use and abuse of the concept of futility. Life and Learning X: The Proceedings of the Tenth University Faculty for Life Conference June 2000 at Georgetown University. Washington, DC: Georgetown University Press; 2000:91.
Pless JE. The story of Baby Doe. N Engl J Med.1983:309:664.
For a complete list of selected references, visit www.AmericanNurseToday.com.
Leah Curtin, DSc(h), RN, FAAN, is a Clinical Professor of Nursing at the University of Cincinnati College
of Nursing in Ohio, and was the Editor-in-Chief of Nursing Management for 20 years. She also is Managing Partner of Metier Consultants, and the Director of Cross Country Education’s Nurse Manager Boot Camp.
