Dialogue with the Ethicist
(Presented by a NICU Social Worker)
A set of twins was transferred to NICU; 25-weekers who came in for a neurosurgery consult on Friday. They both had significant brain bleeds, white matter loss, and hydrocephalus. One of the infants was better off than the other, but both had midline shift and were seizing. The less well-off infant’s pupils were fixed and dilated, and he was septic.
Background: The parents are from South America, and have other children. It was only the two parents making decisions; they had no other support. This was a new relationship; the parents were married recently, before the twins were born on. The family had no prenatal care and no health insurance, but the mother stated she knew she was 25 weeks along.
Chronology of Events: On the first day, a family meeting was set up with a social worker, chaplain, PANDA team, and Spanish translator in attendance. Neurology was present to explain how poor the prognosis for the twins was. The family was counseled several times about transitioning from aggressive care to comfort-only care. It was explained to them that neurology was not going to consult because there was no therapeutic intervention they had to offer. Even after the prognosis was explained, the parents reported they wanted to continue, and would not put any limitations on care. Subsequently, head ultrasounds read by the head neurologist and radiologist determined the infants were 22-weekers, not 25-weekers; their brains were significantly underdeveloped.
Over the weekend, the team had more conversations with the family, focusing on the child who was worse off. The family agreed to not do chest compressions on that child after the team explained how “horribly painful” the procedure would be. However, the brain bleed and hydrocephalus became worse with the healthier child; his condition now more closely matched the sicker child. The children were clearly in pain. Due to the condition of their skin, it became very difficult to do lab work. Their heels were described by the nurses as “essentially gone,” which made it “horrible” for the team to provide care. Later that week, both children started to deteriorate. The parents got to hospital just in time for the sicker child to die in their arms. The other infant remained on the ventilator.
The parents appeared to be at peace; both babies had been baptized, which had been very important to them. As soon as the sicker baby passed away, many people showed up to lend support. Some staff described it as frustrating to see all these people show up after the baby had died, rather than supporting these two young parents earlier in the process. The other child continued to get worse for a week and a half. He extubated himself, and was not reintubated. The condition of his skin worsened, and the team could no longer do lab work on him. Meanwhile, the parents became focused on little things: how much weight has he gained? How much has he grown?
The team continued to become more and more uncomfortable. The parents started coming less often, so the team backed off. A meeting was arranged to introduce them to the new attending physician. The remaining baby then died in parent’s arms. Other family members and friends showed up again upon death (not any other time). It was a very challenging three and a half weeks. All kids at CNMC are transferred, so there are many coming for a second opinion; many kids come in same predicament. It is very hard for everyone involved.
Yoram: “Clinical ethics is about conflicting moral obligations. What do you think was the conflicting moral obligation here?”
Social Worker: “It was different for everyone. Many staff felt they were doing harm to kids. The nurses were the ones sticking needles into child every three hours. I can see the dilemma for the parents; what can be done to build trust with them? We know its bad situation from outset; on day one of admission, it was clear what needed to be done. There was not enough time to build a rapport. We worked to get parents to trust in a matter of moments. Team struggled with pain being caused.”
Physician: Parents are entitled to ask for everything, but are not entitled to have everything. There seems to have been lack of clarity among team. Looking at what other high-quality NICU’s are doing, would anyone take these children? The scope of care for these kids is very limited. We end up providing futile care because nurses are sometimes too timid to set limits. There is a lack of comfort with difficult situations with parents who are demanding everything.
Social Worker: The physicians were clear on what team was not going to do.
Nurse 1: We have to live with what we do, but parents have to live with it for much longer.
Nurse 2: ”Doing everything” means something different to the family than it does to the clinician. It means parents can say, “I have no regrets that I didn’t do what I should do.” It’s not about the technology, or what’s futile; it is about their being the best parents they can be in a situation that everyone hopes never to be in.
Unguru: What was the basis for the transfer?
Social Worker: We didn’t have all the information; there was a communication gap. The family had gone to an ethics consult at previous institution. The family relayed that they had been told there was some neurological intervention that could be done at CNHS, which turned out not to be true. At the time, images weren’t available, and the severity of the twin’s conditions wasn’t understood. The transfer team is not equipped to make such calls. They may presume the outcome will be poor, but it’s a very different matter to actually refuse transfer.
The original institution couldn’t make progress with parents, who believed CNHS had the resources to deal with situation. The thinking at the original institution was that the transfer would provide the parents with the feeling they had done everything.
Audience Comment: These babies are never going to leave hospital. Isn’t this a disservice to the babies? I understand we cannot withdraw care without the parents consent, and the physician had terrible feelings about the situation, but what is it like for those at the bedside 12 hours a day?
Yoram: We shouldn’t withdraw care without the parent’s agreement, but it’s unreasonable to put parents in such an untenable situation forcing them to make what for many parents, is a truly tragic choice. We need to take the responsibility; we signed up for these types of situations, the parents didn’t. In part, this means reframing the options that are presented to the parents. Sometimes, instead of saying what we can do, we need to say what we’re going to do. This amounts to more than just withdrawing care, but presenting what can actually be done.
Physician: One problem is that different attending physicians have different decision-making frameworks; the parents were undoubtedly aware of that. Sometimes there is a lack of consistency, which the parents pick up on.
Yoram: What was the expectation of the parents at the time of the transfer?
Social Worker: We knew the situation, but we had to build rapport with the family at the same time we were putting limitations on what could be done.
Yoram: Was there a discussion of what would be done?
Physician: The family was expecting a neurosurgical intervention. The team explained neurosurgery wasn’t going to happen. The family didn’t want to be put into position of choosing to withdraw care. Most of the time, the family doesn’t have any medical education, or know how to make such a decision.
Yoram: No amount of framing the issue will bring parents up to speed. Parents focus on “the little things” because that’s what they can do and that’s okay–what else can they focus on? Often, based on our experience with similar cases, we can play out what will happen, but the family’s background, religion, etc, influence what ultimately happens and no two families experience illness in exactly the same way. We can’t expect to establish rapport and get to know a family and their specific desires and needs in a short period of time when relationship building takes time.
Nurse 1: Why is it that we feel badly when we cannot convince family about the plan of care? Maybe this is a trajectory the family has to go through. Do we think we failed because we couldn’t convince them? No. It feels badly because we cannot relieve what we feel is the pain and suffering of the infants.
Nurse 2: That feeling comes from feeling the parents were not part of the team in terms of agreeing with the course of care. Moral distress came from watching these babies suffer. The team met every single day to discuss the case. Diaper changes were horrific.
Tomas Silber: There is an issue of trust. The family comes from South America; they may have had experiences with discrimination. Very often, there is a different meaning for ending care; a feeling of not being given something because of who you are. Overcoming this requires humility and cultural sensitivity. Perhaps a pediatrician who knows the family, or priest who can consult the family could have been located. Had there been an ethics consult, those are some of the things we would have brought in. We often come to the conclusion that there is no reason to provide futile care. It reminds one of Dostoyevsky: brothers who hate their father, for good reasons. Possibly one of them is so angry he may kill the father. Everyone tiptoes around situation, and allow it happen. The parallel is that often the family is fighting an internal though that this cannot go on, but they cannot do it; through compassion, and perhaps friendship, this thought should be supported. Often when you tell the parents what we are going to do, the parents will not object; rather, they will feel relieved. If they do object, that must be addressed, but no one is obligated to provide medical treatments that are not medically indicated.
Yoram: It’s ok that the parents started showing up less. We view that as a bad sign; but it is hard to see your baby on the vent “bleeding out.” Cases like this one typically result in someone on the medical team bringing up “futility.” I’m not a fan of the word because it means different things to different people, it’s value-laden, and it’s overly judgmental. We need to be very careful about the difference between physiologic futility and qualitative futility. True physiologic futility is rare, instead, what many people mean when they invoke futility is so-called qualitative futility, suggesting that a course of treatment isn’t worthwhile because the patient is suffering or due to considerations about scarce resources. Too often, futility discussions represent a power struggle centered on whose decision about treatment will ultimately carry the day–the medical teams’ or the parents’. Qualitative statements can get us into trouble. Also, in the heat of the moment we may say something in a way we didn’t intend it, and that is difficult to recover from.
Audience Comment: Coming from an adult-care clinical ethics perspective: In pediatrics, there is a very strong emphasis on getting parents to agree; a prima facie obligation to get them on board. That’s defeasible; part of the justification for family-centered care is that parents have “good-enough” interest of child at heart, but they may not.
Chaplain: In the U.S. we have a very difficult problem discussing allocation of resources. We work hard to keep this out of the conversation.
Yoram: Dovetailing on my Leikin Lecture talk and the idea of allocation; prioritization or allocation is not the type of decision to be made at the bedside, rather, it’s an important policy issue. Deliberative democracy is one approach to addressing allocation of scarce resources. It must involve people who have skin in the game; including the patients and families. In other countries, this case may not have gotten to this point because it’s possible there would have been a policy-level decision to help guide things along and in doing so, possibly prevent some of the moral distress the parents and the staff experienced. That’s a very different situation, but one worth keeping in mind.
Audience: Is it justifiable to put these kids through three and a half weeks of agonizing pain to allow parents to come to terms with the situation?
Chaplain: Underpinning patient centered care is a partnership; terms we use such as “getting on board with” betray a different sentiment.
Yoram: As doctors and nurses, we are trained to “fix;” coming to terms with not being able to do so is difficult. We have to be able to be honest with ourselves and those we care for. Parents deserve and respect that.
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