A 16 year old with cystic fibrosis was challenging any and all medical interventions. He had lived with CF all his life, had experienced the labored breathing, the times on a ventilator, and some of his friends with CF passing away no different than when the sun sets every evening. It happens. He knew he was at the end. He wanted a peaceful and dignified death, one with the fanfare of family and friends around him, a celebration and a victory dance. He declared his wishes, he was mature, experienced and wise. I heard him, his parents heard him and we agreed. And so it happened just like he wanted. Some outside the circle challenged the decision, making judgements and remarks that brought shadows on the day of the celebration. I found myself at the center of a group of people who were looking for an explanation. My comments were brief and soft in tone, but long in the take home message.
All of us in healthcare are hardwired to achieve goals like saving lives even in the face of possibly saving a life that my not be worth living. And that is because we don’t know what we don’t know. We drive towards the side of preserving life, hoping for the best. We have two bags that we carry, one a bag of experience and another bag of unknowns but with wisdom. It is how we use the experience and wisdom that makes the difference in ensuring that our patients will have a meaningful life when they go home or in their time of passing from this world.
There are two groups of healthcare professionals: those who believe that they are gods in white coats, and those who are willing to take on a sometime very tough challenge in forming covenant relationships with patients. We all studied a body of medical knowledge and then submitted to act on it. We were taught and learned difficult skills, diagrams, disease processes, therapeutic interventions and more. We weren’t certain that we would ever master it all. But we did, and with experience and wisdom, we found the way to do what is best for our patients. We are hardwired to complete what we set out to do. We are goal oriented. We just need to change our focus on what those goals are: keep patients alive, or ensure that they will have a meaningful life once they leave our care or as they pass from this world.
The group was silent, no questions asked. They got up, beginning to leave, and one by one, they shook my hand. No words spoken. A 16 year old man, yes man, reminded me as to why I chose this vocation of medicine: to do what is best for my patients, to care about and to care for my patients and to be wise in judgments and decisions at the bedside. I think a wise and brave 16 year old did the same for those who had challenged his decision.