How to Talk to Patients About Their Terminal Diagnosis

Arefa Cassoobhoy, MD, MPH; Diane E. Meier, MD


October 30, 2017

Communicating a Terminal Diagnosis

Arefa Cassoobhoy, MD, MPH: How can we give a diagnosis of terminal illness without being pessimistic?

Diane E. Meier, MD: We were not trained to give serious news, even though most of us will do that multiple times in our careers. It's remarkable how our training does not cover that.

The first thing is to ask the patient what their understanding is at that moment. You cannot assume that they know or understood what they were told before. It's always, "Tell me what your understanding is. What did the other doctors tell you?" That is the first thing you say. If [the patient] says, "Oh, they said that I have a shadow on my lung" versus "They said that I have stage IV metastatic non–small cell lung cancer," then your conversation starts in two completely different places.

The first step is to find out what they're able to access in terms of information right now. The next step is to ask them how they like to receive information, because some people really do not want to be told. This is what I say: "Some of my patients like to know every detail about their illness—every single detail—because that's the way they are. But others prefer a more general outline or prefer that I speak to someone in their family. Which kind of person are you?" It does not make a judgment that they should want the information. There are all kinds of people. Some people want the details, some people do not, and it gives them a choice. Ninety-five percent want the information and 5% do not. If you give information to those who do not want it, they will never trust you again and they will not be able to hear what you said.

The next very important step is to ask permission to break the news. "Would it be okay if I give you my medical understanding of what's going on?" Then they say yes, but you have warned them. You have given them a warning shot. Then, break the news in one short sentence. "I'm really sorry to say that the PET scan shows that your cancer has progressed." Then stop talking. This is the hardest thing in the world for clinicians to do because we want to jump into that space and make it better. The patient is not hearing a word you say after you said that the cancer has progressed, so just let them process it. Allow silence and just sit with your hands on your legs with open body language and wait. It sometimes feels like it's a 10-year silence, but it's a 5-second silence. The patient or the family may look up and say, "What do we do now, doctor?" Or they may burst into tears. Or they may say, "I thought that's what was happening because I'm feeling worse."

Respond to the emotion, acknowledge [their feelings], and then, again, ask permission to talk about what the next steps might be.


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