What elephant?

I spend my work week coaching people to herd their elephants. Then there are those times when I question my own license to drive a pachyderm (or, as the cool people apparently refer to them these days, a proboscidean).

The whole point of my job at Menergy is to convince people to stop hurting people they say they love. Ana Lisa’s is to help people figure out how to stop getting hurt by the people who say they love them. Both jobs have such amazingly rewarding moments, but also provide many examples of just how hard it is for any of us to really change the way we operate.

There’s a psych prof down Virginny way who describes conscious moral reasoning as the “small rider” on the back of the elephant that is our intuitive reactions. Jonathan Haight now does much of his writing about happiness, but back in the day made his name studying disgust.

Most days I feel lucky getting paid to do what I do, but this fellow easily makes my gosh-I-wish-I-had-his-job short list. Haidt concocted and then exposed people to all kinds of scenarios trying to measure the nuances of what makes someone recoil in revulsion. (Imagine the possibilities! Who says you can’t have fun and still contribute something to the world?) It led him to the concept of “moral dumbfounding,” meant to describe those times when we react to something strongly but can’t articulate a reason.

From this lovely and oh-so-familiar phenomenon, Haidt went on to propose two mental systems for how we make decisions about morality: “moral intuition” and “moral judgment.” Moral intuition comes from quick gut reactions. The good professor contends that most of us make most of our decisions in milliseconds, guided by these intuitive impulses. Moral judgment, which we could also think of as a process of reasoning something out, is by comparison agonizingly slow and much less fraught with emotion. It also is usually the subservient partner. In practice we often use conscious thought mostly to develop explanations afterward for decisions already arrived at through our gut.

I figure if Haidt is right, then this is a nice example of something many of us would recognize but probably think affects us personally much less than it actually does. Don’t most of us believe we usually make decisions because they make rational sense, and that our reasoning is what drives the process? Sorry to disabuse… The truth, as my boss likes to say, is that we’re “all bozos on this bus.”

By the transitive property of me-too-dagnabit, that probably means I’m just another intuitive, emotional clown posing as a calm, cool rationalist. There’s lots of potential for humor in that realization, but also pain. Ana Lisa and I had to make some awful choices this year, and there has been plenty for us to doubt and question. In the days surrounding and following Javid’s death, we referred a couple of times on his web site to being faced with something we had dreaded, the need to make decisions with seemingly no good alternatives.

A week before Javid died he began a horrifying decline. Earlier that week we sat with his attending doctor and heard her recommendation that they move toward performing a tracheostomy. The next two years, at least, seemed suddenly laid out before us. He was going to have to get cut up, and even if all went perfectly he’d still be in the hospital for months. For a long time, probably years, his breathing would bypass his throat. We would have nurses coming into our home for as much as 18 hours a day. But this was the route home, and eventually the tube would come out.

The good news of the moment was that Javid seemed to have stabilized over the previous weeks. The trach was needed, however, because his lungs were still so damaged that he couldn’t get off the breathing tube on his own.

At an earlier stage of his time in the hospital, the trach option had been our boogie monster. But by the time this conversation happened we were eager for anything that meant moving forward.

Just two days later, though, his ventilator needs began to climb. Unlike so many times before, there was no reversal, no going up to the brink and then coming back. By Monday morning he’d even had to be put back on the oscillator, the machine we’d hated for so long and been so glad to see fade into memory. And still the settings continued to rise.

On Tuesday morning we were terrified but there was still a rug. By Tuesday afternoon that too felt like it had been yanked from under us. We met with his new attending, Dr. Munson, about whom we’d gotten a universal message from other nurses and docs: “Oh, you’ll like him.” It was true, we really did. He was kind. He looked us in the eyes. He knew the right moments to move close and the right ones to back up. One of his specialties was palliative care, although he told us (this was before Javid began his decline) that he had not been assigned to Javid’s case for that reason. Later we were so grateful for that part of his training.

By the time of Tuesday’s meeting it was clear something was very wrong. Javid was at 100 percent oxygen and high pressure settings on the freakin’ oscillator. They were giving him lots of sedative to try to keep him calm, but he still seemed agitated.

Dr. Munson told us he had been consulting with Javid’s previous attending, Dr. Ades, and Dr. Wade, a CHOP doctor who also did rotations over at Pennsy and who had been his attending at a critical point over there. The three of them believed he was having a relapse related to his pulmonary hypertension, and that there was a very good chance he would not make it. Javid wasn’t even stable enough for them to be able to conduct the test that could confirm the hypertension, but it seemed apparent. At the time they thought the relapse had been triggered by a common cold virus, although later testing clarified that there was no virus. (It really made no difference other than taking away some grief that the relapse might have been prevented.)

Then Dr. Munson explained something else. He told us any possible route out of the current situation would require such aggressive intervention and so much additional time on the ventilator that it would place Javid in a category of preemies with dramatically high incidence of long-term, serious physical and cognitive impairment. They used to think it was only the damage caused by the intervention in the early days after birth, he said, but as they’re getting better at keeping micropreemies alive, they’re finding that the kids who stay on the ventilator past their due date start having increased risk of long-term disabilities. The risk goes up steadily after the due date, and at a certain point permanent impairment becomes much more likely than not, and much more often severe rather than mild.

We had understood since Javid was born that any 24-week preemie was at risk of long-term problems. But so far there had been only one concrete measure, that of a slightly-outside-the-norm gap between his brain and his skull, indicating a risk for neurological delays. And we had been told it could simply be a variation that might not have any impact at all. Of course we worried, but it was nebulous enough that we also hoped!

This news was very different. I remember Dr. Munson, in his gentle way, saying:

“In five years is it possible he could be coming back saying ‘Thank you Dr. Munson for fighting for me.’ Yes it’s possible. But it’s much more likely that he’ll be coming back having undergone multiple procedures, with many on-going issues. Would he be thanking me then? I really don’t know.”

The options presented to us were as follows:

  1. To do nothing and see what happened. “Doing nothing” in this case of course meant continuing to provide a tremendous amount of treatment and care, but by comparison was the less aggressive route. It also was the option that currently had him at such high settings and seeming so uncomfortable.
  2. To go whole hog with yet another round of steroids. This was the best bet for making it through the immediate crisis, although they also now worried the amount of steroids would further aggravate the risk for long-term impairment.
  3. To decide that he had fought enough.

We knew which we would choose and we knew right away, although of course we didn’t find out until later that both of us had the same reaction. I remember experiencing it as a cold wave and feeling a little disconnected from my body. I know we were in some shock. Professor Haidt writes about brains constantly engaging in the “central decision of all action,” to approach or avoid. I think what stunned us both in the moment is that we were even willing to approach the idea of choosing to let him go.

I know I didn’t think about it this way at the time, but some of the energy of the next days was seeing if we could put into words the reasoning that fit the initial reaction. I remember also being aware that if the intuition changed the reasoning would likely have to change as well. We kept checking with each other to see if we’d shifted, if either of us had changed our mind. We had LOTS of moments of shifting a little, but always the basic feeling returned.

What Haidt calls moral dumbfounding is when we can’t find a convincing moral judgment for what moral intuition has already decided. We can articulate why, in the end, we chose to take our Wee Boy off of ventilator support. We’re even convinced the reasons were good ones. The one thing that could outweigh the pain of his death was the pain of his on-going suffering. He seemed distressed. They were trying so hard to keep him calm, but he had built up such a tolerance for drugs that he blew right through crazy levels of sedation, sometimes settling down for a while but at other times looking terribly desperate. And the information we had pointed to the strong likelihood of on-going suffering.

Part of the work with people at Menergy is trying to “normalize” the idea of petty thoughts and selfish impulses. Usually that’s not a problem, since I can be quite petty and selfish!

It’s hard to own up to selfish impulses related to Javid, but we’ve had plenty of them. And we know (and knew) our intuitive response to this awful situation wasn’t entirely selfless, although even five months later it’s hard to parse out how much of our sense that this was the “right” thing to do was selfishly motivated. I do know in the middle of our shock and hurt we also experienced some relief. We ‘fessed up to each other that while we hated the idea of having a choice a part of us was also glad for it. And we worried what people would think if we made that choice, and felt guilty for worrying about something like that.

We also wrestled with which would be more selfish, to let him go knowing that some part of us would feel relieved, or to hold on to him knowing there was potential for him to suffer greatly for a long time. Because there are good intuitions and there are bad ones, right? That’s both the whole point and the scary possibility of moral judgment. Are we using our ability to think things through simply to prop up a bad impulse, or are we finding a way to put it to the test, with the possibility of changing the decision if we find a convincing argument that it is wrong.

What a difficult thing it is to ride herd on our elephants with any confidence that we are the ones actually doing the driving. Choosing to take Javid off the ventilator messed us up pretty good in that regard. We honestly don’t know how much of our decision was based on our intuition, and how much on conscious thought.

We’ll never know if the Wee Boy could have made it through that crisis to a place where he could have had a life he enjoyed. After loving him and rooting and hoping for him for many months, that carrot seemed to us to have been snatched away. But we don’t know for sure. And of course we do sometimes wonder.



20 Responses to “What elephant?”

  1. david Says:

    You guys are great Reghawans! See – http://en.wikipedia.org/wiki/Mahout

  2. Bevalee Says:

    Beautiful post, Tony. I’m glad you’re willing to write about how those final days of Javid’s life unfolded. It does me good to read your words.

  3. Matt, Chan, Addyson, and Aeron Says:

    Thank you so much for sharing. I’ve said it before and I’ll say it again, you guys are an inspiration to parents everywhere.

  4. Sara Cohen Says:

    It is so good to hear from you again. I was checking periodically, hoping you would resurface. Thank you for writing about all that you write about. Your words are beautiful and heartfelt. Wishing you both peace!

  5. Helen Lapp Says:

    As a mother who loves words, I loved reading this – with tears. How many points in life are so full of “what if”? A book I recently discovered recounts a different kind of journey post-9/11. Three young mothers – Muslim, Christian, Jew – share beliefs throughout THE FAITH CLUB – determined to do their bit for a more tolerant world. The quote comes from an Episcopalian priest to the Christian at a point when she confesses to doubts about her assumed-to-date beliefs. The priest responds with an encouraging smile: “The opposite of faith is not doubt, it’s certainty.” I value this releasing word. I do know that daily love and care was richly extended by both of you to Javid and to so many of us through those months of hope – so mixed up with uncertainty. Peace, MomHelen