Informed consent, gloomy doctors and life-saving care decisions

There comes a moment when there’s something wrong with a pregnancy or a new baby. The doctor comes to tell you the news. Other parents we’ve talked to hate this moment just as much as we did, not just because of the content of the message, but also because the doctor has to be so darned negative about it. Since our near-miss with our son’s birth, I have been thinking about a different way doctors can approach this talk, providing outcome categories that are more meaningful to childrens’ futures.

“Your child will have breathing problems for the rest of his life,” this talk might start. Or, “Your child won’t ever be able to walk, talk, eat, or do other things to take care of herself.”

In our case, we were not only getting the serious talk about the situation, but there was also a life-or-death decision to be made about resuscitation at 22 weeks and 6 days of gestation. Our neonatologist said, “At this stage, I don’t recommend that babies should be treated because the results are so poor. If you give birth after midnight, I’ll be the one who comes, but my heart won’t fully be in it.”

This birth was in 2012, and at that time, the hospital and the American Academy of Pediatrics said that resuscitation of babies before 23 weeks and 0 days of gestation should be considered “not indicated,” or that it should not be attempted. This has since changed.

On that day, we were also given a series of statistics on outcomes that were kind of hard to process. They had four categories:

  • Unimpaired
  • Moderate to severe neurodevelopmental impairment
  • Severe to profound neurodevelopmental impairment
  • Death

The first and the last were easy enough to understand. The middle two made sense at first glance — yes, we knew that disability was likely as a result of an extremely premature birth, but when is a disability a meaningful reason to withhold care from a child? We had no idea how to process this, and instead thought of it in terms of the two-thirds of Down Syndrome fetuses who are aborted in the womb in the United States after they are diagnosed with that condition. Was that the same attitude they were taking to our potentially disabled baby? We dug our heels in and said we wanted them to try to save our baby.

In my advocacy work for preemies, I have complained about this set-up numerous times. I didn’t like the 23-week limit for gestational age for resuscitation, and I did not like how the data were presented.  I’ve said this in blog posts on Preemie Babies 101, and I said this to our hospital’s ethics committee, and the response that always comes back is, yes, I’m glad your child survived well, but what about those families having to care for profoundly impaired children who may never be able to express a thing about themselves? These families are often wishing they had known there was another option. Eric’s just not connected to what’s really going on here, they say.

I know I cannot win that argument, but I think there’s another way hospitals should take to get parents the information they need to make informed consent. Parents should be presented with some different categories than just “impaired” with an adjective in front of it. I would propose these categories:

  • Unimpaired
  • Delays that can be overcome
  • Permanent impairments that can be managed independently
  • Adult guardianship needed
  • Long-term discomfort and suffering
  • Death in NICU

These categories would be more meaningful to parents, and would address an important division in the question of burden: the burden on the baby and the burden on the parents. As I said, we just dug in our heels and said “save the baby!” but that approach is not going to work in all situations. An overwhelming burden on the baby is, we think, a meaningful reason to think about going to comfort-care only.

Many parents would be quite willing to have a child with cognitive impairments, or who is blind, or who has cerebral palsy and to take on the burden of managing the disabilities. Some would not. But a child permanently on a ventilator, or a child who barely survives necrotizing enterocolitis and doesn’t have a functioning digestive system would be bearing such a huge burden of suffering, it would be a meaningful question whether it was ethical to provide life-saving care. These conditions cannot be predicted with much certainty at birth for an individual child, but if someone had said, “Among the few survivors at this stage, x percent will have long-term discomfort and suffering,” that would have made me think differently.

When Gabriel was 2, another baby in our family endured a greater burden than he did — his second cousin, Jace, was born with Hypoplastic Left Heart Syndrome. His parents were given several decisions along the way. Should they abort in the womb? Should they attempt the three open-heart surgeries necessary to re-route a heart with that condition? Or, should they allow the baby to live his short life at home without interventions? His parents opted for treatment. Jace was getting ready for the first surgery when it became apparent he was not strong enough, and would need a transplant. He got on the list for a transplant, received the new heart, and for a few days looked better before the new heart failed. He spent many weeks of his life on extra-corporeal membrane oxygenation, a machine that can do both the work of the heart and the lungs, but requires the patient’s chest to be opened and left open while the treatment continues. He also had to be put on paralytic drugs. He died at the age of four months.

I don’t know what decision we would have made in such a situation, but I do think that kind of suffering can be a reason to opt for comfort care only.

To get data in the six categories I proposed above would require more guesswork than hard scientific data to tell parents how many babies fall in to each category, but I think it could be done by having neonatologists and birth-to-three therapists get together and say “If x percent of babies born at this stage will have a level I brain bleed, how many of those babies can grow out of it, be permanently impaired but independent, need adult guardianship, or have long-term suffering?” They could go through a list of other conditions and outcomes, dividing up the groups in to these categories with their best guesses.

With this information, the talk between parents and doctors about what to do next for a newborn in severe danger will not get any easier, but it would do a better job of connecting their current world of numbers and machines to the kind of future they might expect with their child, and the decision they should make.

This is the first time I’ve written about this idea, so I would be interested in the thoughts of others. Please comment!

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One thought on “Informed consent, gloomy doctors and life-saving care decisions

  1. I think the scale you’ve presented would be so much clearer to digest when hit with news of complications. Like you say, it touches on both the level of care the parents would need to provide as well as the quality of life for the child. The scale is also more nuanced because it has more steps in it than the list currently used.

    When we were trying to decide whether or not to go through the battery of genetic testing while pregnant, I was amazed at the high numbers of false positives that occur in those tests, driving many parents to needlessly abort. We decided to forego testing (since the outcome would ultimately not change our decision), and I was surprised at the almost angry reaction from my doctor when I told her. As you state, more nuanced data is needed and less gloom and doom.

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