I visited the Seattle Children’s Research Institute recently to talk about our experiences with Gabriel’s birth and getting him the life-saving care that he needed. It was my first talk addressing a group of mostly doctors, the major decision-makers when it comes to whether to provide treatment. There were also bioethics researchers there and some nurses tuned in via teleconference at the Seattle Children’s main building.

Usually I talk to nursing students, who are relatively new in their understanding of the dilemma surrounding a patient who could die in a few minutes without treatment. This allows me to play “amateur professor,” which is fun, and talk about the progress that has been made in care of preemies in the past few decades, from when 28 weekers barely stood a chance to when babies as young as 22 weeks are now saveable.

Seattle Children’s, on the other hand, requested a different presentation as they already know all that. (Sigh.) They wanted me to talk about our experiences as parents through this, how it felt, and our suggestions for how to approach these conferences with parents on whether to treat a child. Seattle Children’s Research Institute has weekly seminars on bioethics, and they scheduled me for one in April. The doctors were older than nursing students (not too surprising) and they sat through my talk looking like they sit through an awful lot of meetings. I was a nervous, giving this version of the talk the first time and speaking with an awful lot of ahs and ers. But, they did seem to engage with my message.

The main points I made with them is that I wanted them to search out familes’ motivations in making the best decision for their child, and that they should provide information that aligned well with those motivations. The counseling before birth that we received was focused heavily on the abilities of a child born prematurely, which we had a hard time engaging with, although at the time we did not know exactly why. They provided us with statistics with four categories with three levels of disability, followed by the percentage of babies who died before they left the hospital even if treatment was attempted.
From our perspective, this was only a little bit helpful. It told us what might be in our child’s future, but it was not supportive of a decision to provide or withhold care. We were more concerned about his quality of life, not about his level of ability. Would he be in a great deal of pain? We knew he would have to spend several months on life support; would he have to spend several years with machines? Such questions did not lend themselves to discrete categories, but they were what we cared about. I argued that with this kind of discussion, doctors and parents could get closer to informed consent, which is the doctors’ goal with these conversations.

This excerpt from the talk that’s about five minutes long summarizes what I’m asking for:

When I started taking questions, I got valuable insights in to the doctors’ perspectives of this moment and this decision. One was concerned that they would be loading up the talk with too much information by adding in the quality of life data and testimonials of other parents who had been through the experience. Another was concerned about the importance of using neutral language to describe outcomes to avoid making a disability sound easier than it was. This point was puzzling to me — how is it possible to make “blindness” sound nicer than it is? The names of disabilities are terrifying to parents when they first hear them, but then I don’t have to live in the doctors’ world in which they have to balance accuracy and dispassion in the things they say.

Here’s a seven-minute interchange on those topics:

And, finally, here’s the entire presentation, if you’d like to see that: