If anyone wants a powerful reminder of why even young people need to have a conversation about advance care planning watch Louis Theroux’s LA Stories Edge of Life
It also brings home why advance care plans aren’t always about refusing treatment. In the case of Langston Jackson it is clear from this he would have told his sister to keep trying. Here’s a snippet of the telling exchange between Langston’s doctor and Langston’s family where it is clear the decision making process could have been eased if Langston’s voice had been part of the conversation.
“Seated in the waiting room’s muddled collection of unmatched seats and old sofas Langston Jackson’s family sat and stood listening to the medical director of Los Angeles Cedar Sinai Hospital.
Dr Heather Jones, was nervous. The reasonableness of the family made it worse in many ways. Her practiced authority belied a vocal tremor. The conversation had to happen but repetition never made delivering such an awful medical prognosis easy.
She began. The facts were these. Langston Jackson, a 22-year-old, right back for the Cedar Bears high school American football team was in a medically induced coma after a drug overdose. He had suffered liver failure, massive brain damage and after five days it was time to make a decision on turning of the support system that was maintaining his life.
Jones looked up into the eyes of Langston’s sisters and uncles, and a camera filming for BBC television documentary on the American way of death.
She began: “I wanted to talk to you guys about what is going on. I don’t want to dash your hopes but I need to tell you that from a scientific medical stand point he [Langston] is not going to wake up and he’s had severe brain damage and that the best case scenario is he will be in a persistent vegetative state, he will have diapers he won’t be able to interact he won’t be able to talk again he won’t know who he is.
The room was silent. The people who loved Langston as a young man full of hope listened but didn’t hear.
Then Dr Jones requested: “I want you guys to think about Langston. If he could be part of this conversation, let’s say not now, let’s say in a month from now if he hasn’t woken up would he want to be kept alive in that state."
The family was subdued. They knew what they wanted for Langston but is that what he would have wanted. He’d never talked about being in an accident. Why would he? At 22 you’re invincible.
Dr Jones was just doing her job. Her explanation was clear but this was no longer a medical decision. This was a judgement call. A decision had to be made about a son, a brother, an uncle’s life without them having a say.
Off camera Dr Jones explained what was happening: “It’s so hard. I know I’m talking at them and I know they aren’t hearing me. I think they are still in that state of slight unrealistic hope I don’t think I could penetrate that.”
Back in the family room the science had passed by the Jackson family. They focus on the 22-year-old. The boy who had strayed into drugs, put himself in rehabilitation, then fallen again.
Langston’s sister painted a picture to Dr Jones: “You didn’t know him before coming in here but he is a fighter and he is very stubborn and he will come round in his own time. I don’t think we are going to worry about my brother being a vegetable. My brother was always full of life and hope and optimism. He wouldn’t want us to give up on him because he never gave up on himself.”
What if Langston could have spoken in that meeting? What if Dr Jones had a video from a young vibrant man saying: “Let my sister take the decision, she knows me best” or “try everything to keep me alive”. What if doctors could listen to people voices even if they couldn’t speak for themselves.
As a society we plan for the birth of our children. We put money aside to insurer against our inevitable death and ambiguously call it life insurance. We put money in plans for our retirement and write wills to order our financial affairs but we resist spending 10-minutes to write down what our choices, preferences values and goals might be in a medial emergency. We resist planning and preparing for the inevitable even though – like Langston – we never know when an emergency might befall us.
In the 21st Century there must be a way.
In the end Dr Jones listened to Langston’s family and he made a full recovery. Dr Jones describes it as a miracle. Langston’s family describe it as doing what Langston would have wanted.