Friday, June 7, 2013

The Doctor Is Not God

We absolutely love Jack's medical team. They saved his life in the NICU and continue to help him thrive today. We have doctors in our family and we love them (Jack's Grandpa and Aunt are both medical doctors and amazing ones at that. And Jack's Grandma is a highly talented nurse). So, yeah, we have a whole lot of respect for the medical community and the hard work they do. Just clearing that up before I begin today's post. This is something that has been on my heart for a long time...

The NICU doctor is not God. 

"He will have 70 shunt revisions in his lifetime"

"She will never eat by mouth"

"He will never walk"

"He will never talk"

"He will be in a wheelchair"

"The gracious thing to do would be pull support"

"He will be paralyzed"

"She will have severe Cerebral Palsy"

"She will be a vegetable"

All of those statements have been uttered over Jack or over a friend's micropreemie, by a doctor. Probably well-meaning and all, but these kinds of statements, in my opinion, have no place in the delicate field of NICU medicine.

Why you ask? Because doctors are not God. They cannot predict the future, nor should they try doing so.

I understand doctors have this tricky job of relaying statistical data to parents of preemies with brain bleeds. And that is really all they have to go off of - statistical data and their own experience. Where some cross the line and where this post is coming from is in the comments like "she will never eat by mouth." How do they even know this? How can they predict it? Because this precious baby suffered a brain bleed? Do they have some sort of crystal ball? How do you suppose this makes a NICU parent feel? With the weight of the world on their shoulders, often deciding between pulling life support or not? Blanket statements have no place inside NICU walls.

Doctors cannot predict your child's future. They cannot predict how the brain will heal after a bleed. They cannot predict exact areas that will be affected (beyond MRI results). And they certainly can't tell you what the "quality of life" will be like for your child.

And boy, do I hate that term.

We knew Jack's likelihood of survival, based off of being a white male, born at 23 weeks, with a grade 3/4 bilateral brain bleed. We knew it was around five percent. We also knew that Jack would be getting a shunt. One day a doctor cornered us in a small hallway and really, for lack of a better term, "let us have it". He told us all about what he thought Jack's "quality of life" would be if we continued life support. He told us Jack would have 70 shunt revision surgeries in his lifetime. That he would be an invalid, probably in a long term care facility.

We left that discussion utterly and completely devastated. We got the message loud and clear. A guilt trip, really. The doctor was basically saying that the best thing to do would be to take Jack off life support and let him die peacefully. I remember the day so very clearly. We were getting so many mixed messages and trying to navigate the murky waters of micropreemie medical care. Jon and I just held each other and cried for hours. It was one of the worst days of my life.

Were we being horrible parents for keeping Jack alive?

Thankfully, this doctor was not Jack's first, go-to Neonatologist. We later met with our #1 and came up with an action plan. We would continue life support until she knew, beyond a shadow of a doubt, that Jack would not survive medical treatment (organ failure, etc).We didn't want Jack to go through painful procedures and surgeries if it was useless and only prolonging Jack's agony. But, we wanted to try everything in the book, if, if there was a chance. No matter how small. And she respected our choice. She told us the statistics and continued to give us all options, all sides. Life or death in the NICU is a very grey area. She gave us any information that we requested. We knew that Jack had a very high chance of cerebral palsy (if he even survived). But we also read studies (given to us by this Neonatologist) that suggested that not all hope was lost.

Thank God for this woman. Jack would not be here today if it wasn't for her optimism and willingness to treat our 23 week, "wimpy white boy" of a baby.

Being a NICU doctor is such a high and wonderful calling. There are many who excel at this job. But when you start playing Doomsday Doctor, somehow thinking you are all-knowing, God's own voice on earth, the absolute truth in predicting a micropreemie's outcome, well, that is where you cross the line from being a great doctor, to playing God.

This was originally posted on August 12, 2012 and is being republished today as part of our Flashback Friday series. 

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Becky P said...

Amen! You said everything that was in my heart!! Thanks

Shannon said...

Great timing to repost this - right at Med School Graduation!!

Anonymous said...

My son was in the nicu for 31 days. He is not a preemie he has a malformation in his brain. We were told that he had les then 50 percent survival and NO chance of not having significant disability. He proved them wrong he currently is a 6 year old who just graduated kindergarten, with above his grade level reading and math skills. The dr aren't God and I remind myself that everyday at work in an adult ICU. We don't have a crystal ball in the medical field and we can't say for positive how anyone's story is going to turn out.

Tatum said...

Every time I see this post, I get made at those doctors who think they know the future. There was a time when I was really angry at Owen's doctors for not making predictions. I wanted some glimpse into what our future may be. I have to credit them for not doing it. I know they would have been wrong...I see it in their faces each time they see Owen today. They are surprised at how well he's doing and really...each of our kids has the power to amaze. Yes, the doctor is not God.

Mo said...

I don't know if you'd be up for this, but it would be incredible if you could go back and track down that neonatologist and either show him Jack in person or write him a letter with photos and explanation of jack's functioning and personality and "quality of life" now. As you said, doctors only have the stats to go on, and it would be very instructive to this doc to see a real-life outcome of such a dire story. It would be important for you to describe too what it was like to be cornered in the hallway, how terrible and desperate it made you feel. what you wished he could have said (or HOW he could have said it) that wouldn't have been so guilt-inducing. might change the way he practices and save other parents from this particular piece of the pain you went through.

So glad Jack was in that 5%. So glad he is where is he now.


Tracy said...

I had a term baby that was never the less, very, very sick. Meningitis, Encephalitis, double pneumonia, and more. She was on a heart/lung assist machine called ECMO. She wasn't supposed to live. We were told many times that it would be best to remove support and let her pass peacefully in our arms. She was on gentamicin which is toxic to the aural nerve. She had a brain bleed. We didn't listen to the dire predictions of poor quality of life IF she lived. Our now 18 yo daughter has no major disability. She does have some ADHD symptoms. Is it from her history? or family history? Other than that, she is a smart, self assured young lady getting ready to graduate from high school next week.

Michelle said...

I remember reading this when you first posted it. It's so true!

"Wimpy white boy" should be taken out of NICU talk altogether. What parent of a white premature baby boy wants to hear that they do the worst in the NICU? Not me. I also don't want to hear that being a twin makes statistics so much worse as I'm looking down on my "wimpy white boy" and his even smaller twin sister in the isolette next to him!

We were told by a very insensitive ENT that Cade would possibly be trach dependent for life too and would have a hard time even being able to play on a playground. Thankfully, he was very wrong, and Cade never needed a trach.

Fortunately, our NICU drs were awesome! Our NICU even surveyed the parents. I think more should do that to help provide a more family-centered approach that involves the parents in a meaningful way.

P said...

Yes. To all of it! Great post.