Providers need better info on preemie outcomes
Janvier: They underestimate survival
If they were better informed on the outcomes of premature infants, physicians might be more inclined to intervene more often, according to Annie Janvier, MD, PhD, FRCPC, a neonatologist and clinical ethicist practicing at St. Justine Hospital in Quebec and associate professor of pediatrics at the University of Montreal.
Speaking to an audience at the Sixth Annual Pediatric Bioethics Conference in Seattle, sponsored by Seattle Children's and the Treuman Katz Center for Pediatric Bioethics there, Janvier said instead, physicians, nurses, and resident are "not well informed about outcomes of pre-term infants: They underestimate survival and overestimate disability."
Janvier also maintained in her presentation that what is described as beneficial treatment, futile treatment, or as occurring in the gray zone is "relative and subjective."
Twenty or 30 years ago, nature decided what happened to neonates and children with disease or who had been in accidents, because there were fewer treatments to propose, she said.
"Nature decided, and doctors were really good, because they didn't have much to do but hold the patients' hands and be nice doctors," she told the audience.
Then came medical developments, along with increases in available treatments and in survival.
"So, nature doesn't decide anymore, meaning patients, physicians, and society have to decide whether to resuscitate or treat," she said. However, she noted that there are some interventions that patients, physicians, or families may find unreasonable.
That leads to the question of how physicians decide what is beneficial, gray zone, or futile treatment.
As a discussion point, Janvier provided the example of a woman who is about to deliver a pre-term infant at 23 weeks gestation, and she wants to do "everything" for the baby. Questions that the physician would have to ask himself or herself would be:
Do you think it is in the baby's best interest to receive intervention?
Would you offer intervention?
Would you obtain a court order to withhold or to intervene?
"We don't have little clicks to vote, but we wouldn't be" at 100% agreement, she said. "Everyone has their opinions in [such a] case."
How should physicians think about such cases in determining their status as beneficial, gray zone or futile? Janvier suggests that providers consider the following factors: survival; outcome; quality of life; best interest; and resource allocation.
In France, for example, "a do-not-resuscitate order is (generally made) for newborns weighing less than 600 g and/or with a gestation of less than 24 weeks since the mortality is 100%."1
By contrast, in Germany, resuscitation generally is offered for pre-term infants with gestation greater than 24 weeks. At 22-24 weeks, intervention is offered according to the parent's wishes. In a study by Herber-Jonas et al., there was 60% resuscitation at 22-24 weeks. And when resuscitated, survival at 22 weeks was 37%, and at 23 weeks 75%.2
The outcomes depend to a large extent on where the patient is, the attitudes of health care providers, who is on call, and "actually what time of the night it is, often," Janvier said. According to one study by Haywood et al., pediatricians were found to be "generally pessismistic about survival and disability," according to Janvier's presentation.3 Also, pessismists would intervene less often.
In another study by Streiner et al., nurses were found to be even more pessimistic than physicians.4
"Nurses are at the beside, and I think they probably have the hardest work [because they spend] 12 hours poking these babies, suctioning the babies, so they're more aware of the burden of care," she told the audience.
In her own research, Janvier used the example of an imminent delivery of an "infant with a 50% predicted survival and a long-term outcome as follows":
50% "within normal limits"
35% with behavioral/learning disabilities;
15% to 25% with major disability.
In the study, she asked pediatricians and residents if they thought such a baby should be resuscitated in the delivery room. What she found was that "if you tell them the outcome without telling them it's a 24-week baby, the average goes up."5
And according to a Canadian researcher, Saroj Saigal, who Janvier says "wrote terrific and astounding articles" and still does research, in all her quality of life (QOL) research, the "QOL is always superior when judged by children and their parents compared to health care providers."6 In her research, Saigal found that only 13% of extreme low-birth-weight infants had no problems; 56% had one to two problems, and one-third, or 32% had three or more problems.
"So, healthwise, they had more problems, but if you asked them about quality of life," Janvier says, much of the data on factors that determine QOL were the same for these pre-term infants as the control group.
For example, at 23 years, of these infants studied, 35% had a permanent job; 40% had completed school; 10% reported having children (same as control); 30% were living independently (same as control). The ELBW infants reported less sexual activity than normal birth weights (60% vs. 78%). But fewer of the ELBW had problems with the law.
Decision-making and incompetent patients
The guiding principle in decision-making for incompetent patients is the patient's best interest, which can be determined according to legal decisions, with parents as surrogate decision-makers and physicians advocating for their patients, according to Janvier's written presentation.
"If an intervention is in an incompetent patient's best interest and serious harm would follow [by] withholding intervention refusal of care is generally not acceptable not ethically nor legally," Janvier said.
References
- Desfrere L, et al. Extremely preterm infants: resuscitation criteria in the delivery room and dialogue with parents before birth. J Gynecol Obstet Biol Reprod. 2004;331(1 Suppl):S84-S87.
- Herber-Jonat S, et al. Survival and major neonatal complications in infants born between 22 0/7 and 24 6/7 weeks of gestation (1999-2003). Am J Obstet Gynecol 2006;195(1): 16-22.
- Haywood JL, et al. Estimation of outcome and restriction of interventions in neonates. Pediatrics 1998;102(2):e20.
- Streiner DL, et al. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics 2001;108(1):152-157.
- Janvier A, et al. Relationship between site of training and residents' attitudes about neonatal resuscitation. Arch Pediatr Adolesc Med. 2008;162(6):532-537.
- Saigal S, et al. Transition of extremely low birth-weight infants from adolescence to young adulthood: comparison with normal birth-weight controls. JAMA 2006;295(6):667-675.
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