DNR dispute involving preemie leads to lawsuit
Case spotlights parents’ of disabled newborns rights
When babies are born extremely early and face devastating medical problems or severe handicaps, how much power should parents have to make decisions about their care? Should they be able to choose to withhold aggressive lifesaving measures? Should physicians be able to override the parents’ decision if they disagree?
These are some of the questions the Texas Supreme Court will attempt to answer within the next few months.
In a case that is being closely watched by hospitals and neonatalogists across the country, parents of an 11-year-old severely disabled girl are suing the Houston hospital where she was born, claiming physicians there performed an aggressive resuscitation without their consent, resulting in severe injuries that cause extreme suffering and leave her requiring 24-hour medical care for the rest of her life.
Miller v. Columbia/HCA Inc.
According to briefs filed with the Supreme Court of Texas, Houston residents Mark and Karla Miller presented to the Woman’s Hospital of Texas on Aug. 17, 1990, approximately four months before the scheduled due date, with Karla in premature labor.
After doctors were unable to stop the progression of labor, both the obstetrician and neonatalogist on call advised the Millers that at 23 weeks’ gestation, their daughter would likely not survive delivery. If she were born alive, they advised, resuscitation would probably be necessary but would also cause significant complications, including "cerebral palsy, brain hemorrhaging, blindness, lung disease, pulmonary infections, and mental retardation."1
Both physicians advised the Millers that they would need to consent to have the resuscitation performed on their daughter after her birth, and they did not recommend it, saying it would be an experimental procedure in so premature an infant. The Millers chose not to consent to the procedure, and asked that the child, when born, be given to her mother and that "nature be allowed to take its course."
Karla’s medical records indicate that her obstetrician advised that a neonatalogist would not be required to attend the delivery.
However, hospital officials later informed the Millers that a departmental policy required a resuscitation be performed if the child weighed at least 500 grams, whether the parents gave consent or not.
Sidney Ainsley Miller, now 11, was born weighing 650 grams (just under 1.5 lbs.) and resuscitated. The invasive procedures required to resuscitate her and sustain her life, severely damaged her internal organs and circulatory system, her parents claim.
She now is severely retarded, legally blind, cannot walk, talk, or feed herself, and suffers from chronic pain, seizures, and spastic quadriparesis in all of her limbs. She will always require round-the-clock medical care.
Under state law, the Texas Family Code, they argue, decisions concerning Sidney’s care were their sole responsibility unless the hospital obtained a court order finding that they were not acting in their child’s best interests. No court order was obtained prior to the resuscitation.
However, hospital officials, in their response to the lawsuit, argue that they had a moral obligation to perform lifesaving procedures on Sidney, that federal emergency care regulations and the state’s Advance Directives Act requires that they withhold resuscitative measures only if the child’s condition were "certifiably terminable."
Sidney’s injuries, they claim, were a consequence of her difficult and premature birth.
The Millers initially won $60.4 million judgment at trial, which was later reversed by an appellate court that found in favor of the hospital.
The laws in most states, in keeping with the doctrine of informed consent for medical treatment, recognize the parents as the surrogate decision makers for their children, and thus have the final say in what care the child should and should not receive, advises Dawn Dudley Oosterhoff, RN, LLB, SJD, a former neonatal nurse and a resident research fellow at the Canadian Catholic Bioethics Institute and graduate research fellow in the Department of Bioethics at the Hospital for Sick Children in Toronto.
However, this parental right must always be balanced by society’s interest in protecting the welfare of children, she adds.
"Most people would agree that the parents should be the final arbiters," Dudley Oosterhoff says. "But don’t forget that parents’ decision-making responsibilities are circumscribed by child-welfare interests. If a parent makes a decision that we consider not to be in the child’s best interests, the state has a duty to intervene and limit or override that authority."
Clinicians use community standards and accepted medical practice standards to judge whether they believe parents to be truly acting with the child’s best interests at heart, and this is often a difficult thing to judge, she continues.
"The problem with neonates is there are so many uncertainties," Dudley Oosterhoff says. "There is still so much we don’t know or can’t explain or predict, especially with very premature babies. Every infant is different, and two infants with the same clinical diagnoses may fare very differently."
23 weeks is gray area
As medical technology increases and advances are made in neonatal care, more babies are surviving after being born at gestational ages once thought not to be viable, says David Woodrum, MD, a neonatologist and professor of pediatrics at the University of Washington in Seattle.
Very little clinical data are available to guide physicians caring for these very early babies and to a large extent the care they receive is experimental, he explains.
"With this case, you are talking about babies born at 22-25 weeks, and that is sort of our gray zone," Woodrum says. "I think most neonatalogists would agree that at 22 weeks or 23 weeks, and some would say 24 weeks, you would offer the parents as much information as possible and try to educate them about the issues involved, but still offer them the option of either aggressive care or comfort care."
Conversely, parents of babies born at 27 weeks probably would not be offered that option at Woodrum’s hospital, he says.
"In that group of infants, where survival is greater than 90%, and the prospects for the infant’s long-term outcome, if not uniformly great are not uniformly terrible, the parent would not be offered that option," he says.
But in these very early situations, given the high potential for suffering by the child and the lack of good clinical data to predict how the child will do, it is perfectly legitimate for parents to choose palliative care and reject aggressive measures, Woodrum explains.
"Keep in mind that infants given comfort care are not abandoned," he adds. "If they are born alive, they get intensive care, but the type of care is noninvasive and not aggressive. It leans more toward comfort care and love, etc."
Invasive resuscitative measures, such as intubation and mechanical ventilation and intravenous lines, do cause injuries in babies who are this small and underdeveloped, adds Dudley Oosterhoff. This needs to be the focus of more long-term studies of infants who do receive aggressive care, she says.
"I think we, as clinicians, do have a responsibility to consider the long-term effects of these interventions too," she adds. "It is not just our responsibility to do everything we can to preserve life at that time. We should also take some responsibility for the injuries that we may cause in this process, as well."
Unlike infants who are born prematurely, but at a later gestation, physicians cannot reliably predict how an individual infant, born before 25 weeks, might fare with aggressive treatment, says Woodrum.
"There is just no way you can predict with that individual baby," he explains. "You can talk to the parents about the long-term studies that have been done, but they are all on children who were premature infants 15 or 20 years ago. You aren’t really talking about the same thing, because they probably weren’t as premature as these infants are and the technology wasn’t the same."
Problems with uniform policy
Uniform hospital policies, like the one mentioned in the Miller case, that would require invasive procedures in all cases based on the infant’s birth weight can present many ethical and legal problems, say Dudley Oosterhoff and Woodrum.
"In my hospital, there is no such policy and there is no such policy because we have consciously addressed this issue and decided not to do it," he explains. "It is too complicated a situation to have a bright, shining line at a certain weight or whatever."
It is difficult to believe that a set departmental or hospital policy would be unknown to obstetricians and neonatalogists practicing at that facility, he adds. "It doesn’t ring true to me that it would have been a well-defined, well-known policy, and yet the neonatalogists went in and gave the parents a choice that would then be taken away."
The resulting conflict between the parents and hospital officials indicates a lack of transparency about the decision-making process that Dudley Oosterhoff finds troubling.
"It appears that the hospital’s policy neglected to address individual considerations," she says. "It was an arbitrary policy and, so far as I am concerned, anathema to the purpose of clinical guidelines. Good decision-making guidelines do not guarantee or predict an outcome but facilitate a process that is fair and transparent."
Regardless of the outcome of the Miller case, neonatalogists need better models for interacting with parents of critically ill newborns and helping them make decisions, say both sources.
"The way the law is set up, with the informed consent doctrine, it sets up a system where the doctor provides information and the patient or surrogate decision maker makes the decision," says Dudley Oosterhoff. "But, the reality is this is almost never the way it works."
In the case of premature or very sick babies, you frequently have a mother who has undergone major medical procedures and, possibly, a father who is very upset and traumatized about the situation. It is very difficult for them to comprehend the decisions they are being asked to make, she says.
"I think it is important for the physicians to get involved in helping sort through what will this course of action mean in terms of what is important to your family and even go so far as to say, These would be my concerns if I were in your shoes,’" she explains.
In contrast to the situation with the Miller case, it is his experience that many parents are almost programmed to be optimistic about their child’s prospects and want everything to be done, says Woodrum. "Most of the time, even when physi-cians advise or counsel no resuscitation, in that gray zone, parents say they want you to do it," he adds.
Most neonatalogists and neonatal nurses are not blindly out of control and ignoring parental wishes to stop care, as they have sometimes been portrayed to be, he continues. But it is very difficult for both the parents and providers to make a decision in the patient’s interests when you cannot ask the patient.
"I can’t talk to my patients, so I have to negotiate this issue through a third party," Woodrum explains. "I don’t think in terms of the patient’s quality of life in the future since there is almost no way to ascertain that, but I do try to consider pain and suffering. My decisions have to do with whether I feel there would be misery and pain and suffering that would have to be endured early on and if there were all sorts of chronic problems to come later. If so, I don’t have any problems making a decision to counsel parents against aggressive measures if it appears that there will be an inordinate amount of suffering, with a guarded chance of a successful outcome."
Reference
1. Petitioner’s Brief on the Merits. Sidney Ainsley Miller, By and Through her Next Friend, Karla Miller, and Karla H. Miller and J. Mark Miller, Individually v. HCA Inc. Hospital Corp. of America and Columbia/HCA Healthcare Corp., Supreme Court of Texas. Case: 01-0079 on Appeal from Court of Appeals for 14th District of Texas, Houston, Texas, Cause No. 14-98-00582-CV, Trial Court Cause No. 92-07830.
Sources
- David Woodrum, MD, Professor of Pediatrics, Research Affiliate, Center on Human Development and Disability, University of Washington, Box 356320, Seattle, WA 98195-6320.
- Dawn Dudley Oosterhoff, Resident Research Fellow, Canadian Catholic Bioethics Institute, Graduate Research Fellow, Dept of Bioethics, Hospital for Sick Children, 555 University Ave., Toronto, Ontario Canada M5G 1X8.
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