I was 20 years old when my brother Johnny, who was just 17, was diagnosed with Hodgkin’s disease. He was treated for the next several years, often as an in-patient.
When he was 20 years old, he came to my apartment one day and told me: “I’m not gonna make it.”
That’s not true, I told him. You’re going to make it, I said. You’re going to be fine and I’m going to help you. I encouraged him. I spoke of hope. I told him those things – which I knew were not true – because I believed then that it was the right thing to do.
But it wasn’t. Because as I later understood, when Johnny told me he wasn’t going to make it he was also telling me he was getting ready to die. He was ready to face death, but I wasn’t.
When he was in the hospital for the last time, I was sitting with him. Doctors and nurses would come and go. They’d speak over him, and about him, but almost never to him.
Then something happened I will never forget. A radiation oncologist came into the room and asked my brother the simplest question: “Johnny – what do you want?”
“I want to go home,” Johnny said. “And I want to be 21.”
The doctor didn’t hesitate. He took off my jacket, put it on Johnny, lifted him from the hospital bed, and carried him to my car.
At home, my brother was surrounded by the people who loved him. Soon after, Johnny turned 21. Six days later, he died.
That one inspired interaction between Johnny and the radiation oncologist taught me so much. Yes, it is important to provide encouragement and hope. But facing reality at the appropriate moment is crucial. I wish now that I had had the conversation with Johnny – the honest conversation about what he wanted; the conversation we all need to have with our loved ones about how we want to deal with our precious time near the end of life. It would have been extremely difficult, but who knows where it might have led?
I wonder what might have come from asking Johnny that simple question: “What do you want?” I wonder about the people he might have wanted to see. I wonder about the conversations they might have had. And I wonder about the functionality he could have had outside the hospital. But instead of Johnny realizing his wishes for his last year, he spent it mostly in the hospital.
As The Conversation Project launches this month, I think about my brother. Yes, it’s a very difficult topic – is there anything in health care as intensely personal as how we die? Or how the people we love die? But having that conversation at the kitchen table is far more productive than in the crisis-driven environment where it most often occurs – usually in the ICU or other hospital unit.
I wish I had had the courage to let Johnny have that conversation with me so many years ago – so that I could’ve helped him live his last months the way he wanted. That experience taught me to talk to my loved ones: to tell them what I want, and to ask them what they want. And I hope that The Conversation Project will help and inspire thousands of people to ask their loved ones the simple question Johnny’s doctor asked him: “What do you want?”