Have you read Being Mortal by Atul Gawande yet? It’s a very interesting book on several levels. Being a writer, I learned from seeing him make his points through telling stories. He told stories about his patients, himself, and his family. It gave the book an intimate feel, like this could be happening to me or someone I know. If not now, maybe some time in the future?
From a psychological point of view, I could see that he wants to help people. He thinks that if he’s able to get you, his readers, think these things through now, when you’re healthy, then you’ll have the time you need. You’ll be able to reflect and come up with what you personally want in order to have your very best day each day that you have left.
I expected the book to be depressing. After all, it’s about the end of life. And, considering no one has ever come back from the other side, a lot of people don’t like to think about this, especially me.
But what drew me in was the strain of kindness, compassion, and hope that runs throughout the book, chapter after chapter. I could see that he wanted to prepare his readers to get the information we’d need to make decisions that would give each of us the best possible life right up to the very end.
He talks about how doctors are trained to save lives but not how to share bad information, tell patients their disease is terminal or help them make end of life decisions.
Over and over he makes the point, that when the doctor says, “We have this new treatment. I think it’ll help you,” the doctor is thinking one or two years. But the patient is thinking 10 or 20. This is a huge misunderstanding.
Usually the patient never asks, “How much time will this treatment give me?” and “How much of that time will be good time, i.e. time where I’m awake, alert and my pain is controlled enough so that I can enjoy spending it with my family and friends?”
Frankly, the doctor is relieved. He or she is not prepared, even in the last weeks, to say, “This disease is terminal. You have at most a few weeks or months, not all of them good. You might want to think about what’s important to you, something you’d like to do or say to the people close to you.”
He tells horror stories of doctors, right up until the very end, knowing the patient will probably not survive more than a week or two, offering new treatments. Why? Because doctors are uncomfortable saying things like, “This disease is terminal.” “There is no treatment today that can cure you.” “The most we can do is make you comfortable.”
My takeaway from this book is, after the doctor has explained all possible relevant treatments to fight the disease, three questions the patient or the patient’s family need to ask when someone is critically ill. They are:
- When you think about the research and your patients who have undergone these treatments, for each treatment you talked about, what is the longest time any of them got?
- How much of that time was “good time”, i.e. time where the person was awake, alert, and their pain controlled to the point that they could enjoy their day?
- If you did nothing heroic, instead just controlled the pain and treated the disease to slow it down, how much “good time” would you have?
I think the answers to these questions would be far more valuable in helping each of us decide what we want to do than just starting another new treatment.
*Being Mortal: Medicine and What Matters in the End by Atul Gawande, Metropolitan Books, Henry Holt and Company, New York, 2014.