“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.
I spoke to 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. To most 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. We 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 there are some rules, according to Block. 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 their best chance of achieving it. This process 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 palliative specialists, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like you’re distancing yourself. 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 questions that she aims to cover with sick patients in the time before decisions have to be made: What do they understand their prognosis to be, what are their concerns about what lies ahead, what kinds of trade-offs are they willing to make, how do they want to spend their time if their health worsens, who do they want to make decisions if they can’t?
A decade earlier, her seventy-four-year-old father, Jack Block, a professor emeritus of psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass growing in the spinal cord of his neck. She flew out to see him. The neurosurgeon said that the procedure to remove the mass carried a 20 percent chance of leaving him quadriplegic, paralyzed from the neck down. But without it he had a 100 percent chance of becoming quadriplegic.
The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’” He’d made her his health care proxy, but they had talked about such situations only superficially. So she turned the car around.
Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’”
“I would never have expected him to say that,” Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go back in. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do?