Guidelines help decide care for premature infants
Guidelines provide a beginning point’ of discussion
With premature deliveries creating more complex cases in neonatal ICUs, professionals are looking for guidance on when to aggressively resuscitate gravely ill newborns and when instead to provide comfort care for infants too premature to recover.
In Wisconsin and Colorado, doctors, nurses, families, and others have drawn up guidelines to help in these difficult decisions. The guidelines do not mandate care, but provide a "beginning point" of discussion in decision making.
Carole Kenner, DNS, RNC, FAAN, director of educational programs for the National Association of Neonatal Nurses, says she gets calls from nurses all over the country regarding end-of-life decisions in the NICU. "I would say it’s a larger issue than it’s ever been," she says. "We’ve got so much technology now that it’s not a question of can we keep somebody alive,’ but should we?"
Rules are flexible
Developers of both the Wisconsin and Colorado guidelines stress that they are not rules set in stone. Hospitals in those states are not mandated to use them, and where they are in use, each decision regarding a premature infant is taken individually.
"The guideline, in a sense, is a beginning point for discussion," says Peter Hulac, MD, neonatologist and associate medical director for the Colorado Collective for Medical Decisions, the body that developed the Colorado guidelines. "How it’s used probably depends case by case, I suspect based on professional temperament."
Colorado’s guidelines divide infants into three categories, based on a combination of gestation age, complications, and other factors:
1. In the "favorable" category are infants with mild prematurity and few serious physiological anomalies. In those cases, generally aggressive intervention is called for.
2. In the "grim" category are infants with an extremely low gestation age, as well as complicating factors such as anencephaly or other lethal birth conditions. Generally, only comfort care is given in those cases.
3. In the "uncertain" category are infants who fall between the other two categories in age and who have some complicating factors that may or may not prove fatal. In these cases, Hulac says health care professionals should educate parents and be ready to support whatever decision they make.
Currently, the Colorado guidelines define the "uncertain" category to include infants born between 24 weeks and 25 weeks, six days. But the Collective is in the midst of reviewing that timeline to see whether it should be changed in light of hospitals’ experiences since the guidelines were developed three years ago.
Hulac says results for lower gestation age infants may be better outside of Colorado, perhaps because of the state’s altitude. And he says a number of other factors can help determine whether a baby has a better chance of survival.
"It can vary according to gender — girls seem to have more favorable outcomes than boys — and race, since African-Americans do better than other babies. Intrauterine growth is also a factor."
Hulac says that if prenatal steroids, such as betamethasone or dexamethasone, have been given in the last few days before delivery, it can improve the baby’s chance of survival and can be a factor in a decision to attempt to resuscitate.
The decision about how to proceed is made by a team that includes parents, doctors, nurses, often clergy and other trusted friends or family members. "You have to find a balance," Hulac says. "The group has to be big enough to get everyone you need and intimate enough that a decision can be made."
But he says it’s important that health care professionals take a leadership role, particularly in cases where the outcome may be unfavorable. "You can get a situation where at 22 weeks, the couple may say, We know there’s never been a baby that survived at this age; but we’re 45, we’ve never had a baby.’ Maybe they’ve gone through fertility treatments. They ask you to please do everything you can.
"It’s our job to lead and in this case, [it] doesn’t include resuscitation. At 22 weeks, it’s so clear that it’s important for us to be the leader here. And by leader, I don’t mean Fuehrer,’" Hulac continues. "This is a very relationship-based situation. We have to be committed to the relationship with the family and stand right beside them."
In situations where the outcome is uncertain, he says doctors and nurses need to make sure they are giving parents a complete picture of the infant’s medical status and likely outcome.
That’s a point echoed by Catherine Fleischer Groves, RNC, MSN, NNP, a neonatal nurse practitioner and clinical educator in the neonatal ICU at Theda Clark Medical Center in Neenah, WI. Groves was a contributor in the development of guidelines in her state through the Wisconsin Association for Perinatal Care. "If a child has a poor response to the initial resuscitative efforts, of course you need to be keeping in good communication with the family, and they’re going to be right there," she says. "And then you just let them know a progress report periodically on how things are going."
She gives as an example a situation in which a baby has been resuscitated, but later shows signs of internal bleeding or extremely poor lung development and little response to medication.
"When we have more information, that’s what we’ve found to work the best — keep the family fully informed on the progress and what we expect the outcome to be or many times that we’re not going to know what the outcome is for a while."
Communication with family is key
Kenner says it’s important when discussing those issues with the family to understand how their belief system may affect a decision. For example, she says she recently did work in Kuwait, and found a pronounced aversion to ending life support in hospitals there.
"Once life support is started, you do not stop for any reason, even if you’re on life support for months," she says. In cases where religious or other cultural issues may come into play, "somebody familiar with the culture needs to work with the family. You can’t just do what Americans would do without even asking."
Kenner, Hulac, and Groves all support the inclusion of clergy in the decision-making team. Groves says Theda Clark Medical Center’s NICU has its own clergyman, who is well-known in the unit and often works with families there. Some families also may be counseled by their own clergy.
Clergy were on the teams that developed both the Wisconsin and Colorado guidelines, and Hulac said they brought a vital perspective to his group’s efforts. Also included on the Colorado team were people with disabilities.
"They helped us determine, when we say grim’ outcome, what do we mean?" he says. "A bad outcome for one person might be a lifetime in a wheelchair, but to a person in a wheelchair, it’s different. Their voice was important in making sure that we didn’t equate imperfect outcomes with suffering."
A diversity of opinions
One reason the process of working with families on this issue can be so difficult is that there is much diversity of opinion even among doctors and nurses, Kenner says."It’s difficult to reach consensus. It’s really a matter of communication, of being able to sit down and have a really hard discussion. The ethics team needs to sit down with multiple disciplines and talk about how far you will go."
The Wisconsin guidelines stress the importance of communication among health care providers.
At Theda Clark, Groves says the NICU team has worked together for so long that they understand each others’ views fairly well.
"We have an extremely low turnover and the average nurse has been there 15-18 years," she says. "So there’s a lot of experience from which to draw and a lot of experience knowing what outcomes are out there. We have a pretty cohesive group, generally speaking, when it comes to these kinds of decision-making situations."
Also aiding in that cohesiveness is the weekly process of grand rounds, which includes everyone in the department.
"We talk about every case in the nursery and it’s an opportunity for anyone to bring out any issues that they’re comfortable or uncomfortable with," Groves says. "And we talk about it then and there."
The unit also has held debriefing sessions on occasion, if there were a number of unexpected deaths, to help staff work through their feelings about them.
When trying to move toward use of guidelines, Groves says it’s important for nursing administration to find a "physician champion" who can lead the initiative. "There’s ample opportunity for physician involvement, with input. But clearly there must be input there from all disciplines, including nursing and clergy."
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