Dr. Sarah Maufe, a resident physician in pediatrics at UCLA, wrote a thought-provoking op-ed for the Los Angeles Times on April 28.
You should do yourself a favor and read the piece in full. But in the meantime, here’s a synopsis:
Maufe introduces us to a boy she calls Michael. He was born three months early into a lifetime of severe medical needs. He had a series of organ transplants, was in and out of the UCLA hospital, and bounced around various foster homes. Things took a decided turn for the better when he was adopted at age 5.
He finally had parents he loved and was loved by. I saw his face light up when he talked about his new family and the fun they had together. He was enthusiastic about his new school and new friends in Northern California. It appeared that Michael had finally achieved the happiness he so clearly deserved.
At age 12, Michael landed back in the UCLA emergency room.
He was in the midst of another rejection crisis, bleeding from his rejected organs at a faster rate than we could transfuse blood back into him. It was decided to remove his intestines and pancreas from his abdomen and sustain him on IV nutrition. He was admitted to the hospital.
She writes that Michael's life in the hospital was a struggle. He missed his family, and eating normal, kid-friendly food.
Maufe ends with this:
At 13, after 13 months in the hospital, Michael died in the pediatric ICU before getting the organs he was listed for. When I received the email telling me he'd died, I was devastated, and not simply because this beautiful boy was no longer with us; that had been the likelihood all along. The deeper pain was knowing that he'd been denied the quality of life that he so deeply deserved. Were we responsible for robbing him of happiness in our desire to cure him? Did we forget our highest responsibility to comfort always?
As Maufe asks: When does a doctor decide to cure, treat or comfort? It’s a painful situation to imagine, but what would you do? Should Michael's doctors have let him stay at home with his family, rather than take extreme measures to prolong his life? What should guide physicians in dealing with cases like this? Tell us what you think.