What We’ve Forgotten About “Ordinary Dying”

December 28, 2017.

A very important date for my family. It was my parents’ 60th wedding anniversary, their diamond anniversary. My siblings, our spouses, and our children were all gathering that weekend for a family celebration.

Unexpectedly, it was also the date my publishers chose to release my book, With the End in Mind, a collection of stories about the way people live while they are dying.

The book was my attempt to challenge our extraordinary misunderstandings about dying and bring ordinary dying back into public consciousness.

My publishers were not particularly amused when I told them I would be unavailable for interviews, media appearances, or any of the usual publicity.

But I was relieved because I was hiding.

I was hiding because, in telling genuine stories from my 30 years working in palliative care teams, hospices, and hospitals, I was breaking the unspoken but precious pledge of confidentiality between clinician and patient.

You cannot ask permission to tell the stories of people who are already dead. It is a little awkward.

I was dreading getting into trouble.

I had been anxious while collecting the stories. I was anxious while writing them. I was very anxious when I pressed send and submitted the manuscript to my publisher.

When they replied, “We think this is going to be a bestseller,” I laughed.

They were right. It has now been published in 18 languages, which means there are 18 different groups of people who might be angry with me for telling these stories.

That Sunday evening, I looked at Facebook.

A brief aside about middle-aged women and Facebook: In 2017, I knew nothing about social media. That is funny because I now know many of you through social media.

I only had an account, as many women of my generation did, so I could find out whether my children were still alive.

I saw a notification from someone outside my network. My heart sank.

I thought, “This is it. This is the first one. They are coming to get me.”

I opened it, and a huge message appeared.

I am paraphrasing, but this is roughly what it said:

Dear Dr. Kathryn,

I sat beside my mother as she was dying seven years ago.

I listened to the sounds of her breathing as she choked, struggled, drowned, and moaned.

It was terrible. It continued through the day and through the night, then through more days and more nights.

Then, even more terribly, it stopped.

Except for me, it did not stop.

I heard those sounds in the silence. They woke me from my sleep. I could not escape the sound of my mother’s breathing during the final days of her life.

After two years, my family doctor diagnosed me with post-traumatic stress disorder and referred me for psychotherapy. I have now been in therapy for five years.

Yesterday, I read the story in your book in which your first hospice supervisor explained the process of ordinary dying to a patient named Sabine.

I remembered Sabine.

I remembered my supervisor speaking to this deeply frightened woman, who was worried she might be overwhelmed by pain as she died.

She explained the process of dying.

As time passes, people lose energy. They become wearier and begin to need sleep, rather than food and drink, to restore their energy.

They remain awake for shorter periods and sleep for longer ones, moving in and out of consciousness until eventually they are unconscious all the time.

The unconscious brain continues to do two things.

It continues to hear, and it produces strange reflexive breathing cycles that we do not ordinarily hear.

People no longer clear the backs of their throats, so there may be rattling sounds. It is only a small amount of fluid, with air moving in and out of the lungs. Everything is still working.

Eventually, usually during a period of quiet breathing, there is a breath out that is simply not followed by another breath in.

Hollywood does not show us that.

I have said that about Hollywood countless times, but I had never said it in Hollywood before.

My correspondent continued:

Dr. Kathryn, I read that story and recognized everything that had happened to my mother.

I realized there had been suffering in that room, but it was not hers. It was mine, because nobody had explained what was happening to me.

I did not understand that she was safely unconscious, safely dying, and that it was okay.

Last night, I slept through the night for the first time in seven years.

I have practiced very hard not to cry while telling you that story.

In that moment, I thought about all the worry, anxiety, and fear I had experienced about doing the wrong thing while trying to do the right thing.

I believe every family whose story appears in that book would have been glad for that woman.

That was the first message.

There were a few more the following week, then 12 more the week after that.

Soon, they became a flood.

I have received hundreds, perhaps more than a thousand, messages from people who did not understand ordinary dying and were traumatized by that misunderstanding.

It made me wonder: How did we forget?

My grandmother understood ordinary dying because she had witnessed it while caring for people at home alongside her sisters, mother, and aunts.

In 1915, people who were dying usually remained at home and were cared for by their families.

By 2015, when I took early retirement to address the public misunderstanding of dying, most people had never witnessed it.

During those hundred years, we made extraordinary advances in medicine. Those advances have also distorted our understanding of dying.

Today, everyone understands labor and childbirth, another bodily process with recognizable phases and stages.

We make television programs about it, and they portray it accurately because people complain when they do not.

We understand that bodily process. Dying has become the one we misunderstand.

The stories we hear are usually about the times when dying goes wrong, when it is difficult, when there is struggle or distress, or when someone does not receive adequate pain control.

Those things do happen.

Most of the time, they do not.

Most people die quietly, and those who love them leave to grieve.

We have lost our sense of proportion. We do not hear enough about the ordinary deaths that are okay.

Dying might not be your best day, but it might not be your worst day either.

The difficult deaths we still need to address represent a small proportion of the whole.

Think about air travel. I have been thinking a lot about air travel this week.

Would you ever board a plane if everything you knew about flying came from newspaper stories and the media?

We laugh because we still get on planes.

We understand that the events reported in the media are real, tragic, and dreadful. None of us wants to be aboard a plane when something goes wrong.

But we also know those events represent a tiny slice of a much larger picture: 200,000 flights and six million passengers traveling around the planet every 24 hours.

Some of them even arrive with their luggage.

We need to reclaim the stories of ordinary dying that are not being told so that we can understand it again.

When we think about birth and labor, we all know someone who has given birth and described the experience to us in eye-watering detail, over and over again.

That serves an important purpose.

The person is taking an overwhelming experience and turning it into a story through which they can understand it.

They move the experience into autobiographical memory, where it becomes something that happened to them once, rather than something that is still happening.

My correspondent continued hearing her mother’s breathing because the experience had never become safely situated in the past.

Storytelling matters because it is how we make sense of our experiences.

It is also how we offer those experiences to other people so they can benefit from understanding them.

Stories help us make our memories safe. They help us make sense of our lives.

Stories really matter.

We have spent a wonderful day together. We have heard extraordinary stories.

Is there anyone here who has not cried yet?

I stopped counting after five.

We have been replenished. We have spent a day with our people, with those who understand the things that make sense to us.

But we still have work to do, End Well.

These stories are still not being told. They are not being heard. They are not reaching the public.

Those of us who work at the end of life are still caring for people who do not know what to expect and who carry an imagined, terrible death in their minds.

We need to give them these stories.

Are you ready to go out and listen?

Are you ready to tell stories?

Are you ready to encourage people who are quietly grieving to find the radical bravery to tell others about ordinary dying?

They may not do it unless we help create the space.

The world says, “Dying? No, I do not want to hear about that.”

But the time for making stories has arrived.

We have spent a day at End Well listening to and telling stories.

Now we are going out into the world to become a ministry of stories.

Let’s go