Discussing options at the end of life

Atul Gawande has this wonderful piece Letting Go in the New Yorker, a must read for any doctor. Many have commented on how beautifully it is written, on how lyrical and memorable it is here and here. Dealing with death and dying is not easy for anybody, no less for a doctor. The narrative is compelling and the advice from Dr Susan Block revealing. I copy it here but would strongly recommend reading the whole article.

I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”

One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.

The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

Block has a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.

Agree with you Dr Gawande, understanding the limits and possibilities of medicine is a process, not an epiphany.

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