Ethan Butler’s best chance to truly live was for his parents to accept the fact that their infant son would die.
Born with a congenital heart defect, Ethan had lifesaving heart surgery when he was 10 days old in the spring of 2008. Unfortunately he suffered a very rare complication, a major stroke that left him severely brain damaged. Physicians from different disciplines told Ethan’s family that their little boy had limited brain function, for which there was no cure, and that a ventilator was keeping him alive.
I was then invited by the cardiology team to meet Ethan and his family. Our interdisciplinary team has met the families of many children facing life-limiting conditions. Each case is heartbreaking, tragic and utterly unfair in its own way. Our role at Children’s Minnesota – one that still goes unfilled at many pediatric hospitals – is to work with families on a plan to help their child live as long as possible, as well as possible.The family told me about Ethan’s short life and showed me photos of him.
I finally asked, “Given what Ethan is up against, what are you hoping for?”
“Hope” may seem an odd choice of words. Nearly all families hope for a miracle, a cure, and Ethan’s was no different. As a father of three children, I cannot help but hope with them. It is not just wishful thinking – I have seen miracles in medicine. They tend to happen on their own time, in their own way.
But keeping Ethan on a ventilator, in discomfort, subject to seizures, facing a short life potentially full of suffering, wouldn’t improve his chances for a miracle. He deserved the chance to have the best quality of life possible.
“Just in case the miracle does not happen, what else are you hoping for?”
Ethan’s family was surprised by my question. Rather than offer another grim prognosis, I asked how we could help them. We wanted to hear their story about Ethan so we’d better understand their perspective.
Ethan’s mother, KaSondra, had difficulty accepting that Ethan would never get better. Our interdisciplinary team’s job was not to dash those hopes but to help her plan the best way forward – hoping for the best, while planning for the worst.
KaSondra and her family didn’t want Ethan to suffer or to be on a ventilator for the rest of his short life. Considering how ill their son was, I said that I worried he would not survive the day once we performed a “compassionate extubation.” But even with the amazing advances medical science has made, we cannot predict a patient’s outcome with certainty. As it turns out, Ethan’s case would prove that.
His family asked me to promise that Ethan would be comfortable.
With the right medications, I told them we could make Ethan very comfortable without making him too sleepy as we removed the breathing tube.
When we removed the tube, as expected Ethan became breathless. I increased his dosage of pain medication (fentanyl, similar to morphine) to as much as three times the dose he had been on over the previous days. I did the same with a drug called midazolam to ease his breathlessness.
Contrary to common thinking in the medical community, if used correctly, these powerful drugs are safe even in large doses for children and babies. Titrated carefully to effect, these medications for pain and shortness of breath do not make children stop breathing, but on the contrary, help them live longer and better.
We took Ethan outside the hospital to see the sun for the first time in his life. And then Ethan did something that surprised everyone. He simply refused to die: His breathing became comfortable and regular.
Two days later, Ethan’s family was ready to take him home. His family learned how to keep him comfortable through massage therapy and administering a few drops of the comfort medications under the tongue. At first daily and then every few days, one of our palliative care staff members, which include nurses, social workers, child life specialists and chaplains, would visit them at home.
We encouraged his family to treat Ethan like any other baby. He went to restaurants, on a boat ride, even to the new Batman movie. He spent a night at Grandma’s house. To onlookers, he was just a normal, healthy baby.
We told his 8-year-old sister, Faith, “You might never run or play with your little brother, but you can make lasting memories together.”
In August, when Ethan was almost 4 months old, his family took him to Minnehaha Falls, a majestic urban waterfall in Minneapolis. He was looking a little gray and they had a feeling the end was near. By the falls, under the sun in his mother’s arms, Ethan looked up into her eyes and took his last breath.
Don’t get me wrong – not all of our patients die under a waterfall. But no matter where they die, pediatric palliative care makes sure that children live longer and better.