How to Tell Patients They’re Dying
“Will I Die?”
The patient, a young woman in her twenties, looked me in the face and asked me directly. The patient had been in the intensive care unit (ICU) for many weeks and was on multiple life support treatments including a ventilator, continuous dialysis and artificial feeding.
Despite the Herculean efforts of the patient, her family and the entire medical team, her condition did not improve. It was obvious that she would not survive her hospitalization. She wanted so badly to go home, but it would never happen. She knew how ill she was, but she was unaware that she was dying. We arranged a family reunion. We had to tell her what was going on.
As her palliative care physician, I conducted the interview. She couldn’t speak, but she could express herself by writing on a blackboard. With the help of my colleague, an intensive care doctor, I explained to her how ill she was and why she wasn’t getting better. I said, “As such, we must tell you that… you will not be able to go Home.” Then she wrote on her whiteboard, “Am I dying?” and looked straight at me.
This is a question that doctors are often faced with, but also one that doctors are not very good at answering.
Some doctors avoid answering directly, saying, “Well, we don’t know for sure…” or “Doctors don’t have a crystal ball”. It’s true, we don’t know for sure, but often we know to some extent. Perhaps doctors have been trained to be afraid of saying something they can’t be sure is absolutely right. But I also think it’s unfair not to tell patients what you know just because you can’t tell with absolute certainty.
Another way to answer this question is to reply, “Why do you ask?” Patients may ask if they are dying for a variety of reasons. Among other things, they may have uncontrolled pain, they may not understand how ill they really are, or they may have significant worries about their family or job. If “Am I dying?” comes out of the blue: “Why do you ask?” is the perfect answer because it allows you to explore the reason behind this question.
However, in my conversation with this particular patient, I had explained her poor health and told her that she could not go home. In this context “Why do you ask?” seemed like a strange question. It was clear she was asking because I had just told her she was too ill to go home.
This is a critical point when talking to seriously ill patients. As a medical and palliative care professional who is considered an expert in such conversations, I must give a direct answer to the patient’s question. I need to convey this terrible information as clearly and humanely as possible.
How should I react?
I don’t generally feel comfortable answering “yes, you’re dying” or “no, you’re not dying”, mainly because those answers may not be clear enough. In a way we all die and live at the same time. It depends how you look at it. Instead, I prefer to say, “Well, your time seems to be getting shorter and shorter,” because that’s more objective and concrete. There is no room for subjective interpretations to cause misunderstanding. Often patients respond with “What do you mean? How short is it?”
The following are my answers when they ask me how much time is left.
“You want to know?” I must first get the patient’s permission to give this important information. Some patients change their minds even after asking, and say, “No, don’t tell me that.” If there are multiple family members in the room, one of them may not want to hear the answer. We cannot force the information on someone who does not want it. This is a critical point: unless the patient asks me, “How short is it?” I specifically ask for permission by saying, “I just said time is running out. Do you want to know how short it is?”
I generally add, “We can’t give you the exact number, but we can give you our best guess based on our experience.” I would like to emphasize the uncertainty of the forecast.
“When I answer this question, I will answer with a time span, like hours to days, days to weeks, weeks to months, months to years.” I want to prepare the patient for how this information will be conveyed.
“In your case, it’s probably…days to weeks…” That’s the punchline. I intentionally speak very slowly with lots of pauses before and after “days to weeks”.
Then I ask, “Are you surprised to hear that?” This question is useful for two reasons. First, it addresses the patient’s emotion by naming it, and second, it measures how they took the message. Most patients will say, “Yes, I am…” which means I need to slow down and continue to respond to their emotions. But some will say, “No. I kind of knew…” In that case, they’re more willing to talk about the next step, and I can move the conversation forward.
My approach to this conversation was developed by looking at my mentors and based on my own experience, including a lot of trial and error. For me, that is the clearest and most humane approach. I practice this conversation myself and teach it to my trainees.
It almost always satisfies the patient’s need for greater clarity – but it was not so with this particular patient. After I told her that she had days to weeks to live, she asked me again, “Am I dying?” I was starting to get nervous. The way I told her couldn’t have been clearer. I saw her family at the bedside receiving the news. I repeated it even more slowly with an abbreviated version: “Well, your time is getting shorter and shorter…in the range of days to weeks…” Again she asked me, “Am I dying?”
Another reason I’m uncomfortable with answering “yes” or “no” is how the “D word” sounds to patients. There are some clinicians who say that death and dying are not dirty words, so we shouldn’t be afraid to say it. I agree, but at the same time I think we should be careful how and when we say it. The purpose of communicating with our patients is to let them know what is happening to them and to make sure they understand. Doctors should be clear enough and use the D word when necessary. But I don’t think it needs to be said or repeated unnecessarily as long as the patient understands what you mean.
However, in this case, my usual approach clearly didn’t work. I had to say the D word. I answered awkwardly, “Yes…You’re dying…Slowly…” It finally made its way in. She said, “I see.”
Shunichi Nakagawa, MD, is director of inpatient palliative care and associate professor in the medical school at Columbia University Irving Medical Center in New York City.