Preparing for Death and Dying: Listening to Loved Ones

When we care for people who are dying, a central part of that experience is to witness: just to see, just to know, this is what happens. This is how we die. This is what it looks like.

We can’t stop death. We can’t protect a person from the inevitable changes. But we can look at it clearly, and we can look without judgment.

With our practice, we learn to let ourselves be seen. We learn to see others as they are. We learn to hear what other people are saying in many different ways.

Everyone has heard of what is called famous last words. Most of these are completely apocryphal. People often stop speaking weeks before death.

Now, why don’t people say coherent last words at the end of their life? Most dying people are simply not capable of clear speech in the last hours, and sometimes the last days and weeks, of life. I won’t cover the many physiological reasons here, but just know that there are neutral physical changes that happen. It doesn’t mean you can’t communicate. There are lots of ways to communicate.

And dying people start talking to us a long time before they die. We are all communicating all the time. We forget that. We may not realize how much we are communicating. But sustained practice and experience make it easier to read these more subtle ways of expression. We learn to listen to each other in new ways.

When we move toward dying, many of us will want to share the details with friends and family. Others will want to keep the many details to themselves. But one way or another, people will tell us what they want, what they fear, what worries them, and what they hope for. We’re always saying these things to each other: what we want, what we fear.

And how do we hear what people want to say to us? By listening. Listening is hard. It’s not complicated, but it’s hard. Few of us communicate or listen really well.

Part of this is because we’re always driven to think of ourselves first. But in the context of a big change like death and dying, we have to remember that anytime you’re feeling anxious or emotional, it becomes harder to hear, much harder to put your own needs aside and fully attend to another person. Half the energy of being with a dying person is listening. Just listening. Just listening.

I don’t just mean listening to [someone’s] voice. I mean listening to what the body is saying, listening to expression, listening to movement.

So notice your own predispositions here. We know from research that people who are of a higher social class or a higher level of education put a higher value on speech, a higher value on speaking over nonverbal communication. Notice if you have this tendency. Notice if you value words more than touch. Recognize that silence is the social norm for many people, and one of the ways they communicate.

My eldest son is profoundly deaf. He can communicate only with American Sign Language. And when I began studying ASL, I worked with a Deaf teacher. I was not allowed to speak in class or one-to-one with him. No matter how confused I got, I was not allowed to ask a question or speak. I quickly learned how much of language is in our bodies—how much of language is in your shoulders, your arms, your hands, your face, your posture, how you hold your head. All of these things say a lot about how we’re feeling.

But with all of our skill, communication at the end of life can be opaque. It can be hard to parse. It can be shadowed, metaphorical, or symbolic. It’s still communication. So sometimes we have a code that we have to crack. Somewhere in this opaque or confusing communication is a wish, a hope, a dream, or a desire.

When my mother was in her final months of life, she was dying of breast cancer. She never spoke about dying, not once. She never even admitted that she was ill, let alone terminally ill. And I was frustrated. She would not talk to us. Even when she was sleeping in a hospital bed in the living room of her house, when she was barely able to walk, she would not discuss it.

Instead, there was a day when my sister and I were both present, and she sent me into her bedroom to get her jewelry box. She proceeded to spend the afternoon dividing all of her jewelry up between me and my sister and setting aside a small pile for my sister-in-law.

None of this jewelry was particularly valuable in terms of money, but in terms of communication, it was priceless. This was how she told me that she knew she was going to die soon. This was how she told me that she knew we’d be all right, that she wished the best for us, that she loved us.

So we have to always treat people as though they are communicating, and that they are communicating.

One thing we know from research is that people seem to receive a gestalt, or a gist, even when they can’t hear the exact words. People are responsive to the tone of voice. They’re responsive to the volume of the voice. They’re responsive to pitch, even if they don’t understand the words. So when we communicate with the dying, it isn’t just the words that matter, it’s how we say the words.

You’re very emotional at that time. You may be anxious. You may be very sad. You may be full of feeling, and it will express itself in your words, so you have to be careful about voice, volume, tone, and posture, because as much as they are communicating with you, you are also communicating with them.

Even when dying people are no longer responding to words or voice or even touch, they do respond to music. I’ve seen this. Recently in my practice community, in my sangha, we had a senior member who had been a musician. He was dying of early-onset Alzheimer’s disease, and the disease took away his voice at a pretty early time.

For about the last year of his life, he had a hard time saying more than a few words. But long after he stopped talking, even after he could no longer walk, even after he could no longer stand, he would follow the chants. He sometimes hummed and tried to keep tune with us. He would pat his leg in rhythm with the drums. He did this until he lost consciousness two days before he died. And we kept chanting because we don’t know how or when people stop hearing.

Be alert to all the ways that people are talking. Be alert to every facial expression, every gesture, all of body language.

Most dying people will still make sounds even after they stop speaking. They may think they are making sense. We have to wonder what it is they want to say and try to understand this code.

One thing to keep in mind is that when somebody is moaning or making noise at the end of life, our minds jump to pain. We jump to assume that this must mean pain. But in fact, it may be an attempt to communicate. A person may be trying to speak. They may even think that they are speaking. So we never automatically assume pain. Look for other signs as well, and a medical professional, a nurse or a doctor, can give you some idea of other ways to gauge pain.

Just a few other practical points. A multilingual person will often revert to their original language at the end of their life. Know what their first language was. Know how to get an interpreter quickly.

A dying person may also rely on the vocabulary of their career, the work they did, their family of origin, or their religion. So these are other good things to know. If somebody suddenly begins using terms you don’t know, they may make perfect sense to this person from the job they held for forty years. And don’t assume a person is confused just because you don’t understand what they are saying.

They are telling you something. I really strongly suggest keeping a notebook beside the bed for everyone who is visiting. Ask people to write down everything that is said, everything that they witness, to help you learn how to crack that code.