Stop Trying to Soften Bad News for Patients

Arthur L. Caplan, PhD


August 23, 2019

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm the head of the Division of Medical Ethics at NYU School of Medicine in New York City. I recently read a fascinating account from a physician with a terminal illness. He had received test results that showed he had enormous levels of cancer in his body. He also had a scan and he knew that he had a tumor that was probably 5 cm.

As many of you know who are watching this, and as I've learned, that means trouble when a tumor is larger than 3 cm. In this case, it was pancreatic cancer. He knew that people were also talking about Alex Trebek on Jeopardy! who suffers from the same disease. Everybody, wanting to be hopeful, did not really say that it was a pretty lethal diagnosis.

As his care progressed, he complained even more that people would not use the word "dying" around him. I understand, morally, why people don't want to do that. It takes away hope. It's blunt. It's probably emotionally charged. There used to be literature back in the '50s that said not to use terms like "dead," "dying," or "terminal illness" around patients because they might commit suicide or be emotionally broken.

I don't think we believe that anymore. We believe that even terrible diagnoses or the fact that you're going to die can be communicated to the patient. The trick is how to do it, when to do it, and who should be present—not so much avoiding it. We need to examine the issue first, morally, why you should do it.

The physician said that people were avoiding the use of direct and honest language with him. He said that people would talk about his tumor outside the doorway, hoping perhaps that he would hear and interpret what they were saying. Others would come to the door and offer some bad news about a test but would not enter the room.

Why does it matter? He said he wanted to plan. It was important to him to bring his affairs in order, to say goodbye to people, and to watch certain movies and shows that he loved before he couldn't do that anymore.

He felt that planning his final time was crucial to his quality of life and his well-being. He felt that if his fellow doctors couldn't be blunt and let him prepare for his death, they would never be able to do it with non-doctors. He couldn't presume that a non-doctor would make the guesses and the inferences he did when he realized that he had a terminal diagnosis that was going to kill him soon.

Over the years, I have seen and learned a few things about giving bad news to people, particularly about terminal illness, having sat through many conversations and watched hospice and palliative care experts doing it.

You can presume that patients coming in for tests have a pretty good idea that the news could be bad. Therefore, you can almost play to that understanding and say, "As you know, there was always a possibility that we'd find something that could really be dangerous for your health, that we can't cure, or that will take your life. That's happened. It looks like your tests are positive."

You're building into the fact that the patient understands that they're facing something grim, they're worrying about it, and it won't come as a complete shock to them that, sadly and unfortunately, it has happened.

I think it's important to offer the patient condolences. Reach out and touch the patient on the arm to physically communicate as part of bad news. People do not want to feel abandoned, like a pariah, or like a leper because they're dying. I think that sort of contact matters.

Coming into the room and sitting down close to the patient to deliver these bad diagnoses and grim information is very important. I've seen people do it exceedingly well. I think offering time for questions and asking about that is important.

Probably the most important thing that I've seen that I thought was effective is presenting the information, letting people understand what it means, but then coming back and going over it again at a later time.

It's hard to process bad news. It's hard to listen and it's hard to understand what's really being said sometimes, even when it's plain, blunt, and direct. I've seen studies that say as few as 10% of cancer patients understand that they have a terminal diagnosis even though they have been told.

I think repetition is important. Ask the person if they'd like to have a family member or a friend present when they come back to talk about it further. Make sure that you spend the time—not just once, but more than once—to convey the information.

Nobody wants to hear terrible news. Nobody wants to process bad news, and it takes time to accommodate, adjust, and accept. It's important to come back and repeat the information in an environment that the patient decides is acceptable, with family or friends present—or not, as they wish. Giving them that option for a return visit can make a world of difference.

I'm Art Caplan. I'm at the Division of Medical Ethics at NYU School of Medicine. Thank you for watching.

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