'It's not what you see in the movies': Doctor demystifies dying

Originally published on March 13, 2020

By her own estimate, the retired palliative care physician has witnessed at least 10,000 people die. Her bestselling book With the End in Mind: Dying, Death, and Wisdom in an Age of Denial was published in 2018. The Guardian called it a book of "humbling compassion and rare insight into mortality."

"It's a conversation I've had with hundreds, maybe thousands of dying people, to give it context," said Dr. Mannix.

"And what's astonishing is that when I start describing to somebody what normal dying is like, I always say to them, 'Listen, you know if this is too much for you at any point you, you just stop me.' And nobody has ever stopped me."

In an interview with Dr. Brian Goldman, host of White Coat, Black Art, the British doctor shared insight into exactly how we die, and why it's important that health-care workers have frank conversations with patients and their families about death. 

We don't talk about dying, and a big part of your job is to tell people exactly what happens when they die. Take me through that. 

Toward the end of life all the roads converge in this common pattern which is mainly about just running out of energy … And the thing that helps to sustain them, more than eating and drinking ... is sleep. They are not just asleep. They're unconscious. Their breathing is now an automatic reflex cycle ... that moves between deep and shallow breathing … and fast and slow breathing. It can have quite long pauses. 

When it sounds [like] panting, that doesn't mean they're breathless. This is just reflex. And, any little bits of saliva or bits of phlegm that come up from the chest make a little pool at the back of the throat ... And it makes this bubbling noise that sounds odd. 

People refer to it colloquially as the "death rattle," as though it's some really terrible awful thing. It is very, very weird to listen to, but actually it's a really reassuring thing. What it's saying to those of us who've been beside dying people a lot of times is, this person cannot even feel that really sensitive part at the back of their throat. Now this person that you love is completely unconscious. 

As we get to the very, very end of this cycle, the breathing is getting slower. It's getting shallower. There might be gaps. There will be an out breath that just isn't followed by an in breath. It's as simple and as unremarkable as that, and often families miss it. 

Everybody in palliative care can tell you stories of walking into a bedroom of a patient they've been looking after for a long time, and the family is gathered around the bed. The person has stopped breathing and nobody has noticed. So, really not very Hollywood. It's not what you see in the movies. [It's] way more gentle than that.

You call death the best-kept secret in medicine. And what you're talking about begins with the language —  it begins with the "D word."

It does. And we're borrowing [in the U.K.] I think, North American phrases. So, people began to pass, to pass away, they're late, lamented — but not very often dead.

You know when we're training young doctors, when we're training young nurses … We bring them into health-care schools and we train them how to save people's lives, and we don't talk to them about normal dying. Then we expect them to be able to have these tender conversations.

But we don't actually use the words "dying" and "dead." People don't always understand that's what we're talking about. If we just say, "Oh, you know, he's really, really seriously ill,"  that doesn't communicate, "Your dad might die."

Do you ever find a family who, [when] you use that phrase, "Your dad … is sick enough to die,"  they put up their hands and say, "No, no we don't want to hear about that"? 

Yeah, of course, of course. And I don't want to be telling them either. So this is about being people, isn't it? It's not about being a doctor, I think.

What generally I do at that point is, I make a cup of tea, because that's my stock in trade, and we'll sit down and we'll talk about the fact that actually, they don't want to hear about it.

I don't want to be having to have that conversation with them either. But if there's a chance that tomorrow we'll be apologizing because this person has died and nobody warned them. That's a far worse conversation for them to have to have. So sometimes the conversation is medicine, and it is unpleasant.

There's a lot of cups of tea in [your book].  I've had a lot of conversations with families and I don't think I've ever served them a cup of tea or coffee. 

It isn't the key to having the conversation, but it's a signal that actually, we are now becoming people with each other ... I'm very conscious of the power imbalance when we're talking to our patients and when we're talking to their families.

Supplying beverages is a way of saying, "OK, so I'm here with you. We are getting the wagons in a circle here. We are thinking together with each other about what can happen, what might happen, what this person you love would want, what they wouldn't want. You know them best. You are the experts here about this person.  My team has expertise about the medicine. Let's pool our resources. Let's get ourselves together here."

And [I'm] doing that by making a cup of tea.

How many deaths do you reckon you've witnessed?

I tried to do the math for this. Every time I do the math, I think that's terrifying. Or somebody might send for the police if I go public with numbers. But over 30 years in palliative care I reckon that the teams that I have been working in have been working with — somewhere between [10,000] and 15,000 people at the very end of their lives.

I don't want to be a Pollyanna. I don't want to be misconstrued as saying that all dying is peaceful ... and everybody is reconciled. It isn't. It's usually okay.- Dr. Kathryn Mannix

That doesn't mean I've sat at that number of death beds, although I have sat at quite a lot of death beds.  But, it means that I would be the person who would be called if the dying wasn't going to plan. 

That's what makes me confident in saying that usually, ordinary dying with symptoms, with symptoms well-palliated, is okay. You know, none of us is gonna be in a hurry to go. It's not going to be your best day, but you have had way worse days in terms of uncomfortable experience than that last day is likely to be. 

I don't want to be a Pollyanna. I don't want to be misconstrued as saying that all dying is peaceful and gorgeous and everybody is reconciled. It isn't. It's usually okay. Sometimes it's really, really smooth and sometimes it's horrible … But if that's, you know, maybe a dozen out of maybe 12,000, that's a very, very, tiny number. We mustn't pretend that it's always okay. But we also must be reassured that it is usually okay.

Q&A edited for length and clarity,

Show notes: This week's broadcast ends with a song sent to us from one of our listeners, dedicated to front-line workers. 

We also heard from Caroline Boast who told us her brother, Robert Boast, died on Oct. 24, 2020. Find out more about Boast's story and his struggles with homelessness, cancer and the pandemic.

Written by Dawna Dingwall. Produced by Jeff Goodes.