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I’ve been a practicing physician for 20 years. In this series, I share some of the best practices and helpful phrases I’ve learned for talking about bad news and end-of-life issues with patients.
“There’s absolutely nothing we can do for you,” the oncologist said.
My patient had breast cancer. She was only 34 years old. She had two young children, and she had hoped surgery would remove her cancer and give her a chance to raise them. Unfortunately, the cancer had spread to her bones and chest at the time of diagnosis. She fought her cancer with cycles of chemotherapy and hormonal therapy, and these treatments held it at bay for years. But while we have good treatment, we do not have miracles. The cancer rebounded from each successive therapy, leaving her with a failing liver, uncomfortable fluid collections under her lungs, and progressive weakness from invasion of her brain and spinal cord. She was too weak for more treatment by the time she was admitted to the hospital under my care.
It was time for “the talk.” My patient needed to transition from active treatment to palliative (comfort focused, aka hospice) care. She also needed to change her “code status.” When she died, unavoidably and unable to survive longer, it would be cruel, ineffective, and wasteful to call a “code blue” and have an ICU team try to revive her. They would fail. Or, if they did succeed, she’d experience pain and suffering in the ICU and die soon anyway. I’ve seen that happen many times, and I feel it’s my duty to save patients from that worst-case medicalized death—or at least to make sure they know what might happen to them. As I often say, “I prolong life, but I don’t prolong dying.” So I arranged a meeting with the patient and oncologist to break the news. And the oncologist reminded me how important it is to do these discussions well. To know the “magic words” to make this difficult decision easier on our patients.
“There’s absolutely nothing we can do for you.”
As soon as I heard those words, I took over. The oncologist sounded upset, even angry. Their voice said it, their posture said it. I interrupted to say, “What they mean is we don’t have a chemotherapy option any longer. We will treat any symptoms that come up, like pain, nausea, or trouble breathing. If something comes up like an infection, we could give you antibiotics—it’ll be up to you. And we will always be with you and fight with you.”
I know what the oncologist had been trying to do: to emphasize that there was no good option except hospice. To guide the patient to a gentle death. But there are better ways to convince a patient to enroll in hospice, ways that don’t hurt. Which brings me to lesson one:
There’s Always Hope.
For some patients, there might be a cure. Others, long-term survival. But even in the worst possible cases I can offer comfort, a release from suffering, a break from unpleasant therapies, and promise that we’ll never ever leave them. Some doctors offer the wrong kind of hope. I’ve seen doctors offer a third-line chemotherapy and tell me later they know it can’t work, that the patient should just enroll in hospice, but they didn’t want to take away their “hope.” Well, coming to doctor visits and getting procedures to continue toxic and unpleasant and ineffective therapies isn’t anything any patient of mine has said they hope to do. But realistic hope is crucial. And I’ve had to say that: I had a patient with weeks or less to live (four days, it turned out) who said she hoped to see her daughter marry. I asked for details… her daughter was only two. “I wish for that too,” I said. “But we can’t expect that to happen. What’s something you hope for in the coming days?”
Find Out Where They’re At
“If you get really sick, do you want us to, you know, use life support? Like CPR to keep blood moving, maybe shocks, a breathing machine with a tube down your throat?”
I’ve heard some variation of this question a hundred times, starting off a discussion, and it’s entirely the wrong approach. I’ve seen dying patients traumatized by this question, and I’ve had patients who already had written DNAR (“do not attempt resuscitation”) orders ask for full life support because 1) the question is confusing and 2) it implies the alternative is no care. I’ve even heard a doctor say, “If you get really sick, do you want us to try to help you?”
The magic first words are, “What’s your understanding of your illness/treatment options/what to expect in the coming months?” And you get replies like this:
“Well, my cancer has stopped responding to chemotherapy. I figure it’s time to think about hospice.” That from a patient who would have let a doctor do a whole monologue about the necessity of hospice out of sheer politeness. I just had to ask, and the “hospice talk” took 30 painless seconds.
On the other hand, I’ve heard this, from a patient with pancreatic cancer which was incurable at diagnosis and whose cancer had grown during radiation—a patient who died months later: “I really need to get my final radiation session in so that I can be cured and get back to teaching.”
With those magic words, “what’s your understanding of…”, you instantly know where the conversation must go. In my next post, I’ll discuss how doctors can frame the question so it focuses on the patient’s interests, rather than on a treatment sticking point which may not be helpful.
Thanks for reading. It’s been quite a journey and privilege taking care of amazing people at some of the critical and vulnerable moments of their lives. I hope these pieces have been helpful to those facing cancer and other serious diagnoses. In the next entry in this series, I’ll discuss how shifting from talking about specific treatments to underlying goals helps us make good decisions.
Comments and stories are welcome!
