by Shunichi Nakagawa, MD October 22, 2022
« Am I dying? »
The patient, a young woman in her 20s, looked at my face and asked me directly. The patient had been in the intensive care unit (ICU) for many weeks and had been sustained by multiple life-support treatments, including a breathing machine, continuous dialysis, and artificial nutrition.
Despite the Herculean efforts of the patient, her family, and the whole medical team, her condition didn’t improve. It became obvious that she would not survive her hospital stay. She wanted to go home so badly, but it would never happen. She knew how sick she was, but she was not aware that she was dying. We scheduled a family meeting. We needed to tell her what was happening.
As her palliative care physician, I was leading the conversation. She could not talk, but she could express herself by writing on a whiteboard. With the help of my colleague, an ICU physician, I explained how sick she was and why she would not get better. I said, « As such, we have to tell you that…you will not be able to go home. » That’s when she wrote on her whiteboard, « Am I dying? » and looked straight at me.
This is a question physicians often face, yet it’s also one that physicians are not good at answering.
Some physicians avoid answering directly by saying, « Well, we don’t know for sure… » or « Doctors don’t have a crystal ball. » It is true we don’t know for sure, but oftentimes, we do know to some extent. Maybe physicians have been trained to be afraid of saying something they cannot be sure is totally accurate. But to me, it is also unfair not to tell patients what you sort of know, only because you can’t say it with complete certainty.
Another way to answer this question is by replying, « Why do you ask? » Patients may ask if they are dying for a variety of reasons. They could have uncontrolled pain, they may not understand how sick they really are, or they could have significant concerns about their family or job, among other things. If « Am I dying? » comes out of the blue, « Why do you ask? » is the perfect response because it allows you to explore the reason behind that question.
However, in my conversation with this particular patient, I had explained her dire medical condition and told her she would not be able to go home. In this context, « Why do you ask? » seemed like an odd question. It was clear she was asking because I had just told her she was too sick to go home.
This is a critical point in the conversation with patients who are seriously ill. As a medical professional, and as a palliative care physician who is deemed an expert in this kind of conversation, I need to give a direct answer to the patient’s question. I need to convey this awful information as clearly and humanely as possible.
How should I respond?
I’m generally not comfortable answering, « Yes, you are dying » or « No, you are not, » mainly because these responses may not be clear enough. In a sense, we are all dying and living at the same time. It depends on how you look at it. Instead, I prefer to say, « Well, your time seems to be getting shorter, » because this is more objective and concrete. There is no room for subjective interpretation to cause misunderstanding. Oftentimes, patients respond with « What do you mean? How short is it? »
The following are my responses when they ask me how much time is left.
« Do you want to know? » I first need to get the patient’s permission to give this critical information. Some patients, even after they ask, change their minds and say, « No, don’t tell me that. » Also, 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 somebody who doesn’t want it. This is a critical point: if the patient doesn’t ask me « How short is it? » I explicitly ask for permission by saying, « I just said time is getting short. Do you want to know how short it is? »
I’ll generally add: « We cannot give you the exact number, but we can give you our best guess based on our experience. » I want to emphasize the uncertainty of prognostication.
« When I answer this question, I will answer with a range of time, like hours to days, days to weeks, weeks to months, months to years. » I want to prepare the patient for how this information is delivered.
« In your case, it is probably…days to weeks… » This is the punch line. I intentionally speak very slowly with lots of pauses before and after « days to weeks. »
Then I’ll ask, « Are you surprised to hear this? » This question is useful for two reasons. For one, it addresses the patient’s emotion by naming it, and second, it gauges how they received the news. Most patients will say « Yes. I am…, » which means I need to slow down and continue to address their emotion. But some will say « No. I kind of knew… » In this case, they are more ready to talk about the next step and I can advance the conversation.
My approach to this conversation was developed by looking toward my mentors and based on my own experience, including much trial and error. To me, this is the clearest and most humane approach. I practice this conversation myself and teach my trainees how to do it.
It almost always satisfies the patient’s need for greater clarity — but with this particular patient, it didn’t. After I told her she had days to weeks to live, she again asked me, « Am I dying? » I started to get nervous. The way I told her could not have been clearer. I saw that her family at the bedside received the message. I repeated it even more slowly with an abbreviated version, « Well, your time is getting 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 because of how the « D-word » sounds to patients. There are some clinicians who say death and dying are not dirty words, so we should not be afraid to say it. I agree, but at the same time, I also think we should be mindful of how and when we say it. The purpose of communication with our patients is to convey what is happening to them and make sure they understand. Physicians should be clear enough and use the D-word if needed. But I feel it does not have to be said or repeated unnecessarily, as long as the patient understands what you mean.
Having said that, in this case, my usual approach clearly was not working. I had to say the D-word. I awkwardly answered, « Yes…You are dying…Slowly… » It finally penetrated. She said, « I see. »
Shunichi Nakagawa, MD, is director of inpatient palliative care services and an associate professor in the Department of Medicine at Columbia University Irving Medical Center in New York City.