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Neonatal care for premature infants.

To the Editor: John Robertson, in his article, "Extreme Prematurity and Parental Rights after Baby Doe" (HCR, July-Aug 2004), argues that parents should give up their right to refuse aggressive, experimental treatment for marginally viable fetal infants. Since he chose to highlight our daughter's case, Miller v. HCA, I was surprised he neglected to inform readers that he was prepared to argue the same points as a paid witness on behalf of health care giant HCA in January 1998--until the judge ruled that his testimony was "not relevant to any of the issues in our particular case."

Mr. Robertson apparently feels the need to be heard and has chosen the Hastings Center Report as his bully pulpit. Unfortunately, I find myself again correcting the same half-truths, distortions, and factual misrepresentations that the hospital attempted to use to overturn the jury award in my daughter's case. That jury found that HCA violated Texas law and was guilty of "gross negligence" when a hospital administrator ordered a neonatologist into the delivery room without the required and express consent of the parents to treat.

Here are the relevant--and undisputed--facts: After a lengthy consultation with my wife's physician and the neonatologist on call that day, we opted for compassionate care based on the recommendation that the alternative aggressive treatments would almost certainly cause painful, life-long illness and disability. The hospital had nearly 11 hours before the actual birth to follow the established legal procedures, sanctioned by no less an authority than the Supreme Court, to override our decision. Instead, a hospital administrator stepped in and claimed an arbitrary--and, as the jury learned, nonexistent--hospital "policy" to justify immediate resuscitation.

I presume Mr. Robertson is familiar with the testimony put forth in Miller v. HCA. I challenge him to point out where, during the week-long trial, HCA argued that Sidney's birth was an "emergency" situation. That "defense" wasn't put on the record until HCA's lawyers appeared before the Texas Supreme Court, which, not coincidentally perhaps, used it as the primary justification for its decision to overturn the jury award.

Mr. Robertson seems to believe that HCA's actions were justified because "all parties except the father thought there was a consensus that if the child was born alive, and vigorous, it would be resuscitated." Consensus does not equal consent--especially when the legitimate consenter was present and did not grant permission. Again, the jury found that HCA had literally all day to either obtain that consent from my wife and me, or find a judge who would order it, per established hospital and legal procedure.

Once again I find the need to respond to comments and facts that are inaccurate and constructed after the fact to support the hospital's unfortunate decision and actions to order experimental treatment alternatives. My daughter was not born disabled. The treatment protocol chosen and inflicted by the hospital, over our express objection, caused the damage, pain, and disabilities Sidney endures today. The hospital's decision, in light of established Texas law and their own accepted accreditation policies in place, was little more than a rescue fantasy that doomed my daughter to the very conditions we attempted to protect her from.

Unquestionably, by law and tradition, only the parents have the right to make difficult decisions regarding treatment alternatives for their children, and never should hospital administrators acting in behalf of giant health care corporations be entitled to control treatment decisions for any family. Many parents, informed of the grueling, experimental and damaging measures involved in resuscitation of these near-viable fetal-infants, make the decision to provide supportive comfort care only, without invasive high-tech heroics. It is the very kind of humane care my wife and I would want for ourselves if we were in our daughter's situation, facing excruciating treatments that would lead merely to a life of suffering.

Those who overruled our wishes, and their paid defenders like Mr. Robertson, are not required to pay the lifelong human and financial costs of their decisions and actions. They are not required to witness the pain of these children they have "salvaged." Mr. Robertson talks about the "interests" of the child, but I wonder if the torture involved in our daughter's resuscitation and neonatal treatments or the pain of her ongoing profound disability is truly in her best interest, our family's interest, or even society's best interest.

The only interests we see being served here are those of the health care giants who rely financially on the billions of dollars generated by the high-tech treatment of marginally viable neonates, and the interests of those such as Robertson who are paid to defend this cruel, but highly lucrative, form of "care."

Readers should discount Mr. Robertson's paid testimony as "not relevant" to our case, especially with only half of the story being told, and inaccurate representations of the facts serving as the foundation for his conclusions.

Mark Miller

Sealy, Texas

To the Editor: We read with interest the article, "Extreme Prematurity and Parental Rights after Baby Doe." This somewhat unbalanced and outdated overview suggests that parents and clinicians lack a framework for decisions regarding treatment of extremely premature infants. This suggestion is not entirely true. It is also misplaced to think that the courts have a principal role in decisionmaking.

Robertson correctly notes that the Child Abuse Amendments did not address extreme prematurity or borderline viability. Yet they are often considered to have done so and have been inappropriately applied to these cases by clinicians, hospital administrators, and even hospital legal counsel fearful of litigation--all to the exclusion of patients' best interests.

Robertson states that "Most hospitals and neonatal programs treated premature newborns in conformity with the CAA, with neonatologists present at all premature deliveries and likely to resuscitate newborns born alive, regardless of parental wishes." Such a statement sends a false message that all neonatologists think like Robertson, believing that the "efforts to push back the limits of viability" he alludes to are desirable, reasonable, and compassionate, regardless of parental, societal, or even biological consideration. His portrayal of all neonatologists as egocentric, empirical, insistent autocrats demands redress. We would further ask that Robertson produce the "neonatology ethic" he describes.

In the United States of America and around the world, treatment is denied to patients from certain high-risk populations every day. The limits of beneficial treatment must be examined in light of (a) the patient's medical condition--in this case, extreme prematurity; (b) the expressed wishes of competent patients, or the wishes of those in the best circumstance to judge the best interests of minor children (such as parents); (c) the expressed values and considerations for quality of life; and (d) external factors and considerations. This four-point analysis for ethical decisionmaking has been practiced for years by clinicians. When we presume to know the best interests of non-cognitive infants better than their parents and force "interventions" that are neither proven nor known to be reasonably beneficial, they become merely objects of our whims.

Contrary to what Robertson would suggest, strategies for decisionmaking are already in place for physicians and parents caring for extremely premature infants. Palliative care may be more appropriate in many instances than untested, unvalidated, invasive, aggressive, and burdensome care that may prolong the time of inevitable dying for some infants and may render others disabled. To argue that a state's desire to prevent the death of a child should trump informed parental preferences and clinical judgments is egregious, particularly when the state does not pay for either the untested, unwanted care or its consequences when rendered.

We hope readers are aware of the thoughtful and deliberative decisionmaking process for critically ill and premature newborns in which clinicians engage in the delivery room and the intensive care nursery. These decisions are difficult, colored by uncertainty, made within a plurality of human value perspectives, and charged with ethical, physical, fiscal, social, and spiritual ramifications. The physicians who make them do include parents in the process, informing their views with the realities of medicine's limits.

Brian S. Carter

Vanderbilt University Medical Center and Vanderbilt Children's Hospital

Gerald. B. Merenstein

University of Colorado

School of Medicine

To the Editor: John Robertson wants the Child Abuse Amendments (CAA) of 1984 strictly enforced to protect infants born on the margins of viability at less than twenty-six weeks' gestational age. However, for the past two decades the CAA have been applied to extremely preterm newborns. The chief result has been to transform these infants into guinea pigs for undeclared medical experimentation and overtreatment. Fetal-infants once considered miscarriages are now subjected to months of excruciating procedures usually resulting in prolonged dying or impaired survival.

The acute and chronic pain suffered by these infants contributes to a high rate of brain damage and death. However, because of continuing concerns about the safety and efficacy of pain medication for preterm infants, most endure their lengthy intensive care without benefit of pain relief routinely provided to older individuals. In the words of a mother once featured on Frontline, "We are now torturing babies to life, the way we used to torture them to death."

Most critically ill adults say they would refuse similarly arduous and uncertain life-saving care for themselves. Polls indicate that most parents want the right to refuse such care for their critically ill newborns, and jury verdicts have supported them. Neonatal caregivers have stated that they would not want their own infants subjected to the same treatments they feel compelled by the CAA to administer to other people's children, and many believe the CAA mandate inhumane care that is contrary to infants' best interests.

Possible exceptions to treatment mentioned by Robertson, such as the "virtual futility" of treatment or the infant's future lack of "symbolic capacity," are so vague and subjective as to be meaningless. Probability for intact survival is known before delivery, and certainty of "futility" or "symbolic capacity" can be determined only after months or years of aggressive treatment. If followed literally, the CAA would subject almost every critically ill newborn to what Joy Hinson Penticuff has called "a brutal intensive care from which there is no escape."

Nevertheless, the CAA do serve one vital set of interests--the bottom line of hospitals. Neonatal intensive care units, known as "profit centers" in the health care industry, generate huge revenues that keep entire hospitals financially afloat. Hospital administrators are encouraged to fill their neonatal units with ever more complex and lucrative cases; taxpayers and parents pick up the costs.

The CAA have helped create a large new population of chronically ill and severely impaired children. We now know that 40 percent of children born between twenty-six and thirty-two weeks' gestation are not expected to live independently as adults, and, below twenty-six weeks' gestation, the percentage needing lifelong care will be much higher. As the mother of one such victim of neonatal technology, I urge Robertson and his fellow CAA supporters to turn their ethical attention to the short- and long-term cruelty of the policies they so cavalierly advocate.

Helen Harrison

Berkeley, California

To the Editor: John Robertson proposes that a premature infant receive life-saving treatment in order to determine the infant's "capacity for meaningful symbolic interactions." If such capacity is evident, the attending physician has a duty to continue treatment even if the parents object. Should the infant lack this capacity, withdrawal of treatment is justified. I believe this policy is inadequate.

A capacity for meaningful symbolic interaction is not easily discovered. We are not, as yet, able to identify the specific activity correlated with symbolic interactions in a brain scan. Thus we must rely on non-linguistic behavioral evidence, which may be able to inform us that the infant is engaging in intentional communication. Unlike a brain scan, this behavioral evidence cannot be obtained at birth. Time must elapse before the capacity for symbolic interaction can be determined. It is during this time that opportunities to withdraw treatment are lost. Thus, the act of treating in order to determine whether further treatment is justified may prevent withdrawal when treatment is not justified. The upshot is that parents, who have been deprived of the power to decide that no aggressive treatment should be initiated at birth, are now required to care for a child who may lack what makes life worth living.

There are those who believe that life is of intrinsic value no matter what its quality. This is not Robertson's position. He justifies withdrawal of treatment when symbolic interactions are not possible. I believe that the single most important sentence about life and its quality was made by John McCormick in an article to which Robertson refers: "Life is indeed a basic and precious good, but a good to be preserved as the condition of other values." It is evident that the physical and mental disabilities suffered by Sydney Miller prevent her from satisfying any values beyond minimal interactions with her parents. This could have been predicted, and indeed it followed from what her attending physicians did predict.

Amnon Goldworth

Stanford University

To the Editor: "Extreme Prematurity and Parental Rights after Baby Doe" argues that parents must relinquish their right to refuse mandatory resuscitation at the impending birth of a marginally viable fetal infant. The author fails to acknowledge that many loving, highly ethical parents regard "comfort-care-only" as a valid and humane alternative to the pain and suffering of resuscitation and intensive treatment of a fetus who is about to miscarry.

Marginally viable infants, he claims, "require immediate treatment to stabilize the situation" so they can be fully assessed. But he does not tell your readers about the limited extent of medical knowledge, and that these extremely immature abortuses receive many treatments that have never been properly tested on this unique population. In the short history of neonatal medicine, there have been widespread and repeated disasters of treatment-inflicted blindness and brain damage. Your readers need to know, for example, that the safe level for this population of the most commonly used treatment, supplemental oxygen, is simply unknown; controlled clinical trials to investigate this very basic intervention are only now being organized.

William A. Silverman

Greenbrae, California

To the Editor: It is with some admitted passion that I react to the recent Texas Supreme Court decision reversing the original judgment in the sad case of the marginally viable fetus which survived with blindness and severe brain damage. My passion is based on a lifetime of work with families of preschool blind children. I draw from a reservoir of real life stories. I have seen the results of medical heroics. Many a bitter parent has described the awesome and awful reality of leaving the ICU with their "miracle" baby only to face a lifetime of the "unfolding diagnosis" and the emotional and financial burden that goes with it.

Nancy Akeson

To the Editor: Robertson does not address what must have been an unbelievable failure in communication on the part of Sydney Miller's medical team. A 23-week gestation baby with APGAR scores of three and six cannot be called "vigorous," especially if you consider these scores in light of the "aggressive intervention by the attending neonatologist." The continued aggressive treatment of the baby and the parents' "consent" to further treatment only confirm published literature, which suggests parents often feel they have no choice in decisions regarding their baby. The Miller case is about failed communication and violated trust.

Robertson also does not address the benefits and burdens of, or alternatives to, treatment. He leaves the reader with the impression that every infant born "alive" must receive aggressive treatment. Nothing could be further from the truth. While it is the standard of care to initially resuscitate until more information can be obtained, there are certainly circumstances in which physicians and families can make a decision about how much to do prior to the birth of a baby facing significant problems. For extremely immature babies, published information suggests that a decision made prior to birth can be appropriate. These decisions are made daily by physicians, nurses, and families who work together to serve the best interests of both babies and their parents in the context of what medicine can reasonably offer.

Lucia D. Wocial

Cleveland Clinic Children's Hospital

John A. Robertson replies:

Treatment decisions for severely premature infants remain a highly contested topic, as the several letters here show. My article analyzed the competing interests in this dilemma and proposed ways in which a policy of "always treat conscious, viable infants" might be modified to give greater leeway to parents, while not giving up the important principle of equality for all conscious individuals.

One letter (Carter and Merenstein) misinterprets the article by assuming that I am in favor of aggressive treatment "to push back the limits of viability," while thinking that all neonatologists are "egocentric, empirical, insistent autocrats." I made neither judgment, nor did I quarrel with their account of the factors that physicians and their patients struggle over in reaching decisions about extremely premature newborns. Instead, I attempted to show the conflict that appears to exist between formal legal and ethical standards and the well-meaning efforts of physicians and families in very difficult situations.

Several letters question whether there should be any limit on parental authority (Silverman, Ackerman, Harrison, Miller). This position attracts sympathy because parents end up bearing the great burdens that caring for such children often entails. Yet the law, ethical analysis, and the standards of relevant professional organizations have long recognized that the child's interest requires independent consideration. The article explored several ways to modulate the current stand-off, including greater attention to burden of proof and adoption of criteria for withholding treatment that are less rigorous than the "always-treat if conscious" approach of the CAA.

Dr. Goldworth and Ms. Harrison argue that the substantive modification which I proposed--"the potential for symbolic interaction"--is too vague and difficult to implement to allow meaningful perinatal choice for parents. This standard was intended to give content to the "potential for human interaction" criterion proposed by Richard McCormick, Nancy Rhoden, and other ethicists and advisory bodies. If "potential for symbolic interaction" does not adequately operationalize "potential for human interaction," then some other criteria should be proposed that pay due regard to the interests of conscious, disabled infants while also allowing parents further say in treatment in the most extreme cases.

A key issue in this debate is when decisions to withhold care under such criteria should be made. Ms. Akeson and Dr. Silverman overlook the distinction between immediate treatment at birth for the purpose of assessment and a decision made after that assessment about whether further treatment should be provided. Allowing parents to control all after-birth actions by prenatal directives would permit decisions to withhold treatment from an infant without the more complete information available after birth, thereby risking harm to infants who, contrary to prenatal prediction, meet the medical criteria for treatment. While Dr. Wocial suggests that prebirth decisions can appropriately be made, much more work needs to be done to establish such criteria and to determine whether they give fair consideration to the interests of the resulting child.

The article also described how those issues played out in a tort suit with sympathetic facts for wide parental discretion but a huge damage award that would lead to neonatal decisions being made without complete information about a child's condition. The Miller case turned on whether a parental refusal of treatment that occurred before birth was a valid basis for withholding treatment after birth. According to the record at trial, Mr. Miller objected to treatment before birth but never refused or objected to treatment after birth occurred. In fact, whether due to communication failures (as Dr. Wocial suggests) or other factors, once Sidney was born, he signed consent forms for several medical and surgical procedures, some of which were IRB-approved experiments and some of which were standard therapy for infants in those situations. As argued in the article, I believe that the appellate courts in Texas made the right decision in finding that a parental refusal of treatment before birth should not be effective. Non-treatment decisions should be made only after birth has occurred and a full assessment of the infant's condition and prognosis has been made.

Finally, I disclosed in footnote 15 of the article that I had "consulted with the defense before both the trial and the first appeal." Other ethicists, including nationally prominent figures from Houston, Galveston, and Baltimore, were also prepared to testify either for the defense or the plaintiffs about applicable ethical standards for handling such cases. Although the trial judge refused all expert testimony on the ethics of newborn care, presentation of those views might have led to a quicker and more satisfactory solution of this most difficult case.
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Title Annotation:letters
Author:Miller, Mark; Carter, Brian S.; Merenstein, Gerald B.; Harrison, Helen; Goldworth, Amnon; Silverman,
Publication:The Hastings Center Report
Article Type:Letter to the Editor
Date:Jan 1, 2005
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