Why Physicians Must Communicate Better

Dr. Ira Byock: Hi, Anthony.

Anthony Shore: Hi, Ira.

Dr. Ira Byock: Characteristically quiet. We have a mute linguist with us.

I’m so glad you exist. I have to begin by thanking two of the producers, Tracy Wheeler and Liz Mazursky, for coming up with this idea.

For me, this is a dream come true. I’ve had an interest in language around illness, dying, caregiving, and grieving for years. It would probably be more accurate to call it an obsession.

And it turns out there are actual scientists and professionals who are interested in this stuff, so it’s really a pleasure.

There is a cure for death aversion, and Anthony has literally become a dying whisperer. It’s remarkable. It’s a miracle.

So let’s get serious for a bit.

Language and words are primal human tools.

I want to reflect on something Peggy Maguire said during the last hour. She touched on what, for me, is the primal question human beings are asked: whether to act out of fear or out of love.

When you act out of fear, you constrict. You protect yourself. You flee or freeze.

When you act out of love, you have to be open. You are inherently vulnerable.

As we talk about different choices of language, the terms and metaphors we use can either constrict our thinking and conceptual frameworks or open and expand them.

There is also this dialectic between fear and love.

Words represent ideas, and those words and that language predispose us to feel, act, or perceive in certain ways.

The second concept is that the way we frame an idea, and the words we use to activate that frame, govern how we perceive, believe, and act.

That has a great deal to do with what the end-of-life experience can be for people.

Do any examples come to mind?

Anthony Shore: Sure.

When a person who is dying hears others talking in a way that dehumanizes them or denies their experience, they may come to believe that about themselves. It can become more difficult for them to have a transformative experience near the end of life.

For example, there is a difference between referring to “the Alzheimer’s in Room 3” and “Mrs. Robinson in Room 3.”

If people hear language about death that frames it only as an ending and limits what is possible for them, that can have a limiting effect.

When relatives or friends deny what the person is feeling or the possibility of transformation, that can limit what is possible for the person who is dying.

Dr. Ira Byock: Beautiful.

Language can be pernicious. It can produce the very things that constrict us.

We’ve heard it even today. There is no ill intention, but notice the power of language.

Every time we say “the dying” or “the sick,” we separate ourselves from our fellow human beings who are going through a stage of life that we will also experience.

It would take only a few more characters to say “dying people” or “sick people.” That small change retains their humanity and changes the frame.

I have railed for years against the phrase “a good death.”

We hear it all the time, but it conflates dying with death.

Dying is part of living. Death is beyond life.

I don’t know anything about death. Frankly, I’ve never met anybody who convinced me that they knew much about death.

I know a fair amount about dying because, like so many of you, I’ve spent years with people who were dying and asked them to share their perspectives with me.

Instead of “a good death,” where death is a noun, I often use the phrase “dying well.”

That is more expansive.

First, “dying” is a gerund. I like gerunds. They’re active.

When you hear the phrase “dying well,” everybody initially hears “well” as an adverb. You hear it in the wonderful title of this conference, End Well.

But for me, it is more provocative and expansive to hear “well” as an adjective.

Can a person die while feeling well within themselves? Can you experience well-being during the period when you are dying? Can you end well?

I don’t want to take unfair advantage of you because you can’t talk, but let me frame this as we move forward.

Right now, the people in this room are seen as part of the death and dying movement.

That’s true. We are, and I’m proud of it.

But culturally, which is where this conversation really resides, we should also be part of the wellness movement.

The language would change.

We would talk about the potential for people to die well and to grow, individually and together, through the end of life.

That is a much more expansive and inviting subject.

We’re talking about more than the alleviation of suffering.

Of course we hope a person doesn’t suffer. But could they also grow through the end of life? Could they be well? Could they experience a sense of well-being?

Peggy also used the word “thriving.”

Can people thrive during these inherently difficult periods of life?

I’m not trying to romanticize it. Dying sucks.

I’m a physician. I was an emergency physician for many years. I hate dying.

But it happens.

Can we help people grow through it?

Anthony Shore: What you’re talking about is drawing language from a different context.

When we use language only from an institutional context, or only from the context of dying, we restrict what is possible.

Take “hospice care.” That language is used only within a certain context and period of time.

Why does it have to be “the hospice”? Why can’t it simply be a home where someone is living during this phase of life?

Why is this language used only in the context of death?

Dr. Ira Byock: Yes.

If we want to normalize this work, be culturally sensitive, and invite other cultures into it, we have to be cautious about many of the common phrases we use.

We talk about being “at the end of life.”

Well, when the heck does that start? When does end-of-life care begin?

I have evangelical friends who are put off by the work we do. They understand that this life ends, but for them, it is this life that ends. They believe they are going to another life.

They would prefer language like “leaving this life” or “at the end of this life.”

Those who have read my work know that, instead of saying “at the end of life,” I frequently say “through the end of life.”

If we are providing the best care possible through the end of life, that starts today.

If we say we provide the best care possible at the end of life, people say, “I’m not ready for that. I’m not there yet.”

“Through the end of life” begins right now. I don’t know when it ends. It continues onward.

And let me put in a plug: I think our brand should be that we give the best care possible through the end of life.

You don’t have to wait for it. It can start today.

Culturally, it’s the only thing I know that everybody wants.

When you or someone you love is seriously ill, you want the best care possible. That may look different from one person to another, even when they have the same diagnosis, but we all want it.

The language we use can reinforce those possibilities.

Anthony Shore: There is also a difference between saying someone is dying with cancer, dying from cancer, or living with cancer.

Dr. Ira Byock: That’s exactly right.

Some of us in this audience have Buddhist leanings and are familiar with the idea that what you expect is often what comes to pass.

When you assume somebody is going to suffer and that their suffering cannot be remedied, it becomes more likely that they will.

I see this frequently with people who have Alzheimer’s disease.

We assume that people with Alzheimer’s will eventually become withdrawn, helpless, hopeless, depressed, and untouchable.

Then we create environments, including architectural environments and programs of care, that almost predestine them to become as helpless and hopeless as our language and expectations predicted.

That does not have to be the case.

Some of you may know the work of Dr. Bill Thomas, the film Alive Inside, or Rebecca Mead’s brilliant New Yorker article, “The Sense of an Ending.”

Alzheimer’s disease is not hopeless.

We may not be able to cure it anytime soon, but many more people with Alzheimer’s than we might expect retain a capacity for well-being and joy.

Culturally, this should be the next big thing: the recognition that you can be well during the time you are dying.

That is groundbreaking.

We can carry it forward, but the language, aphorisms, and metaphors we use are fundamental to this dramatic, transformative cultural change that is available to us.

Anthony Shore: We may even want to describe Alzheimer’s disease as a late-life learning disability.

People would see and treat that person differently.

Dr. Ira Byock: Yes.

When you talk about dignity and worth as inherent, that automatically changes your relationship with the person.

They are inherently worthy and inherently dignified.

The question then becomes: How can we care for them in ways that honor and celebrate them?

Honoring and celebrating are gerunds. I like gerunds.

We can honor and celebrate people through the end of life. We can wake them out of this life, to use the Irish term.

There is one other concept I want to introduce: a healthy defiance toward mortality.

We are all going to die. We have to get over that.

But we can remain defiantly joyful, loving, and full of life.

The quote Alexandra shared from When Breath Becomes Air, about Lucy and Paul deciding to have a child, represented a healthy defiance for me.

It was a defiant act that said even force majeure cannot take this from us.

It is culture-changing.

Let’s talk about aphorisms.

Anthony Shore: Let’s talk about the language people believe.

When something is repeated and implanted, it has influence.

People tend to believe and retain language more readily when it is poetic and familiar. That’s why aphorisms often use rhyme, alliteration, and assonance.

When something sounds good, we are more inclined to believe it is true.

When people hear familiar, poetic expressions and proverbs, those expressions can influence what they believe about themselves and what they think is possible.

An idea expressed beautifully can feel more believable and influential than the same idea expressed without poetry.

So we should ask whether the aphorisms and expressions we use contribute to transformation, hope, respect, and a belief in the power of change.

Or do they shut people down and confine what they believe is possible?

What are some aphorisms you’re familiar with?

Dr. Ira Byock: I have two I want to bring to the attention of this group.

The first is “forgive and forget.”

That’s ridiculous. It’s absolutely absurd, and I hear it all the time.

Forgiving is a sophisticated emotional strategy for releasing the emotional baggage you carry.

But it requires remembering.

Forgetting is amnesia.

If I don’t remember that you harmed me or did me wrong, what is there to forgive?

I have to remember in order to forgive.

Forgiving is about my well-being, about our individual well-being. It is not fundamentally, first and foremost, about the other person.

It may involve the other person, but it is first and foremost about us.

Another phrase in our field that I’ve been calling attention to for a long time is, “People die as they have lived.”

They might. They may not change.

But the fact that you are seriously ill, know things are coming to an end, and understand that you are going to lose everything and everyone you love is tremendous.

So often, that knowledge becomes a catalyst for remarkable human development.

People change. People grow. People say they feel intensely alive.

They do and say things they had never done or said before.

Many people change in profound ways that matter to them and to those they love during the months, weeks, days, and sometimes moments before they die.

When we say, “He’s going to die as he lived,” we create the potential for therapeutic nihilism.

Why bother? Who cares? Let’s just end it as quickly and painlessly as possible.

There is no opportunity in that.

But people can change.

I could keep going.

“Things always turn out okay.”

They do not. That’s absurd. It’s disrespectful.

“Things will work out in the end.”

They may not.

Stop saying that.

We can hope for it, but we need to be cautious about our language.

Anthony Shore: During a transformative experience, something can go beyond what we are normally able to express.

People in that phase of life may seem to speak in nonsense, but metaphor can capture and transmit dimensions of understanding and nuance that ordinary descriptive language cannot.

People may experience or speak in metaphors. We should not deny that this is happening.

It is better to embrace it and lean into it, because metaphor may be the only way language can transmit the fullness of the experience they are having.

Dr. Ira Byock: Absolutely.

Boy, we need more of you.

I want to return to the idea of connecting this work to wellness and well-being.

That is a powerful current in our culture.

As we gradually grow up as a culture, we are finally acknowledging that we are mortal and that we are going to die.

Get over it, and let’s get on with living as fully, defiantly, and joyfully as possible.

Here is my father with my daughter, Lila, who was only a few months old at the time.

My father was living with pancreatic cancer. He knew he was dying, and he loved children more than anything in the world.

There he is.

I want to talk about what wellness can mean as people approach the very end of life.

Freud was once asked, “What is mental health, Dr. Freud?”

He said it was the ability to love and to work. It was almost a throwaway comment, but I’ve thought about it for a long time. I think it was brilliant.

To love and to work.

I would add the ability to laugh.

When you can love, work, and laugh, you’re probably emotionally healthy at a basic level. You may have bad moods and difficult days, but you’re probably healthy.

But what happens when you can no longer work?

My father could not work here. What happens when frailty, age, or illness takes you beyond that?

For me, well-being is the ability to love, to feel loved, and to experience joy.

Here is my father, who hated the idea that he was dying, looking at his first granddaughter.

He is ecstatic.

He was sad during this time. It was awful. But he was also ecstatic.

They are connected to one another in a way that is mutually joyful.

I sat with my father during the final days of his life. I had the privilege of caring for him through the end of his life.

My father was well during the period we consider dying.

He died well, not only in the process of dying, but well within himself.

I think this is our great cultural opportunity: to shift the way we think about human beings, human caring, and well-being through the very end of life.

I hope we get to work together because this work is fundamental.

We are down at the very essence of what makes us human.

It is not only our opposable thumbs or our 46 chromosomes. It is our capacity for language and our ability to care well for one another.

The language we use can have a profound effect on what that final phase of life and its transformation can be.

Let’s act out of love rather than fear.

Let’s expand, rather than constrict, the potential for human beings through the very end of life.

Thank you all for the work you do and for joining us for this wonderful conversation.