With the End in Mind Dying, Death, and Wisdom in an Age of

Denial

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 Copyright

Copyright © 2018 by Kathryn Mannix

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 Contents

Cover
Title Page
Copyright
Dedication

Introduction
Reading the Label

Patterns
Unpromising Beginnings
French Resistance
Tiny Dancer
Wrecking Ball
Last Waltz
Pause for Thought: Patterns

My Way
That is the Question
Never Let Me Go
Hat
Take My Breath Away
Pause for Thought: My Way

Naming Death
Second-Hand News
Slipping Through My Fingers
Talking About the Unmentionable
Something Fishy
Plaques
Cat-astrophe
Arrival at Destination
The Sound of Silence
Every Breath You Take (I’ll be Watching You)
Beauty and the Beast
Pause for Thought: Naming Death

Looking Beyond the Now

In the Kitchen at Parties
Please Release Me–A Side
Please Release Me–B Side
Travel Plans
With Love from Me to You
Pause for Thought: Looking Beyond the Now

Legacy
Something Unpredictable
The Year of the Cat
Post-Mortem
Needles and Pins
Lullaby
Pause for Thought: Legacy

Transcendence
Musical Differences
Deep Dreams
De Profundis
Perfect Day
‘Only the Good Die Young’
Pause for Thought: Transcendence
Last Words
Glossary
Resources and Helpful Information
Letter Template
Acknowledgements
About the Author
Newsletters
In a life of stories, this book is dedicated with love to the
tellers of tales:

to my parents, who gave me the words;

to my husband, who distils words into wisdom;
and to our children, whose stories are still unfolding.
 Introduction

It may seem odd that, after half a lifetime of keeping company with the
dying, anyone should wish to spend even more time immersed in telling
their stories. It may even seem presumptuous to offer those stories in the
hope that readers will choose to accompany dying strangers across the
pages. And yet that is what this book sets out to do.
Throughout my career in medicine, it has been clear to me that we bring
our own ideas and expectations with us in any encounter with the Big
Questions. Whether that is birth, death, love, loss or transformation,
everyone frames their experience through the lens of what they already
know. The trouble is, whereas birth, love and even bereavement are widely
discussed, death itself has become increasingly taboo. Not knowing what to
expect, people take their cues instead from vicarious experience: television,
films, novels, social media and the news. These sensationalised yet
simultaneously trivialised versions of dying and death have replaced what
was once everyone’s common experience of observing the dying of people
around them, of seeing death often enough to recognise its patterns, to
become familiar with life lived well within the limits of decreasing vigour,
and even to develop a familiarity with the sequences of the deathbed.
That rich wisdom was lost in the second half of the twentieth century.
Better healthcare, new treatments like antibiotics, kidney dialysis and early
chemotherapy, better nutrition, immunisation programmes and other
developments radically changed people’s experiences of illness and offered
hope of cure, or at least postponement of dying, that was previously
impossible. This triggered a behaviour change that saw the sickest people
being rushed into hospital for treatment instead of waiting at home to die.
Life expectancies increased; many lives were enhanced and lengthened.
Yet these welcome healthcare advances can only remediate us up to a
point; beyond the point of saving us to live ‘well enough’ there is a point of
futility. Here, technology is deployed in a new deathbed ritual that is a
triumph of denial over experience. The death rate remains 100 per cent, and
the pattern of the final days, and the way we actually die, are unchanged.
What is different is that we have lost the familiarity we once had with that
process, and we have lost the vocabulary and etiquette that served us so
well in past times, when death was acknowledged to be inevitable. Instead
of dying in a dear and familiar room with people we love around us, we
now die in ambulances and emergency rooms and intensive care units, our
loved ones separated from us by the machinery of life preservation.
This is a book about real events. Everything described really happened
to someone, sometime, in the last forty years. To preserve the anonymity of
the people described, almost all the names have been changed, along with
their jobs, and sometimes their gender or ethnicity. Because these are stories
rather than case histories, sometimes the experience of several people is
woven into a single individual’s narrative, to allow specific aspects of the
journey to be depicted. Many of the situations may seem familiar because,
despite our averted gaze, death is unavoidable, and these accounts will have
parallels in many people’s own experience.
Because most of my career has been spent working in palliative care, it
is inevitable that most of these stories are about people who have had access
to palliative care specialists. This generally means that any challenging
physical symptoms have been engaged with and usually reasonably well
controlled, and emotional symptoms are being addressed. Palliative care is
not solely concerned with dying: excellent symptom management should be
accessible to people of all diagnoses at any stage of their illness, when they
require it. That is the broad remit of the specialty of palliative medicine.
The majority of our patients, however, are in the last months of their lives,
and this gives us a particular insight into the way people live when they
know that they are dying. It is that part of our experience that I am seeking
to convey in these stories: how the dying, like the rest of us, are mainly
getting on with living.
In the main, I am offering the reader my eyes and ears, my seat at the
bedside, my place in the conversations, and my perspective on events.
Where there are lessons for us, these are the gifts of the people whose
stories are collected here. Where there are mistakes, they are entirely my
own.
It’s time to talk about dying. This is my way of promoting the
conversation.
 Reading the Label

Medicines usually have a label that says ‘Take as directed.’ This helps us to
get the intended benefit from the prescription and to avoid under- or over-
dosing. The prescriber should have described what the medicine is for, and
agreed a dosing schedule with the patient, who can then choose whether or
not to follow the medical advice. The label also often includes a health
warning, to ensure that patients know about any potential hazards.
Perhaps it will help you to decide how best to approach this book if I
describe what it’s for, and what kind of ‘dosing schedule’ I had in mind.
And yes, there is a health warning, too.
This book is a series of stories based on real events, and the intention is
to allow the reader to ‘experience’ what happens when people are
approaching the ends of their lives: how they cope; how they live; what
matters most; how dying evolves; what a deathbed is like; how families
react. It’s a tiny glimpse into a phenomenon that is happening somewhere
around us every single day. By encountering death many thousands of
times, I have come to a view that there is usually little to fear and much to
prepare for. Sadly, I regularly meet patients and families who believe the
opposite: that death is dreadful, and talking about it or preparing for it will
be unbearably sad or frightening.
The purpose of this book is to enable people to become familiar with the
process of dying. To achieve this, the stories have been grouped into
themes, beginning with stories that describe the unfolding and evolution of
dying and the variety of ways in which people respond to it.
Throughout the book, each story can stand alone to satisfy readers who
like to dip in and out at random, but there is a gradual progression from
more concrete principles like physical changes, patterns of behaviour or
dealing with symptoms, towards more abstract concepts like making sense
of human impermanence and how we evaluate, in the end, what has been
truly important to us.
 Also threaded through the book, but not in any chronological order, is an
account of my transition from a naïve and frightened student to an
experienced and (relatively) calm physician. My life has been
immeasurably enriched by working within clinical teams of skilled
colleagues, many of whom feature in these stories. They have supported me
and acted as mentors, role models and guides throughout my career, and I
am deeply aware that our strength lies in teamwork, which always makes us
stronger than the sum of our individual parts.
Health warning: these stories will probably make you think not just
about the people in them, but about yourself, your life, your loved ones and
your losses. You are likely to be made sad, although the aim is to give you
information and food for thought.
At the end of each section there are suggestions of things to think about
and, if you can, to talk about with someone you trust. I’ve based these
suggestions on current knowledge from clinical research, on ways I have
seen people and families coping with serious illness and death, and on the
gaps I have encountered that could have been filled to make the last part of
life, and the goodbyes, so much less challenging.
I’m sorry if you’re made sad, but I hope that you will also feel
comforted and inspired. I hope you will be less afraid, and more inclined to
plan for and discuss dying. I wrote this book because I hope we can all live
better, as well as die better, by keeping the end in mind.
Patterns

Medicine is full of pattern-recognition: the pattern of symptoms that

separates tonsillitis from other sore throats, or asthma from other causes of
breathlessness; the pattern of behaviour that separates the anxious ‘worried
well’ from the stoical yet sick person; the pattern of skin rashes that can
indicate urgency and thereby save a life.
There are also patterns in the way a condition evolves. Perhaps the most
familiar these days is pregnancy and birth. We know the nine-month pattern
of pregnancy: the changing symptoms as morning sickness gives way to
heartburn; the early quickening and later slowing of the baby’s movements
as the swollen belly constricts activity towards term; the pattern and stages
of a normal birth. Watching dying is like watching birth: in both, there are
recognisable stages in a progression of changes towards the anticipated
outcome. Mainly, both processes can proceed safely without intervention,
as any wise midwife knows. In fact, normal birth is probably more
uncomfortable than normal dying, yet people have come to associate the
idea of dying with pain and indignity that are rarely the case.
In preparing for a birth, pregnant women and their birth partners learn
about the stages and progression of labour and delivery; this information
helps them to be ready and calm when the events begin to take place.
Similarly, discussing what to expect during dying, and understanding that
the process is predictable and usually reasonably comfortable, is of comfort
and support to dying people and those who love them. Sadly, wise
‘midwives’ to talk us through the dying process are scarce: in modern
healthcare, fewer doctors and nurses have opportunity to witness normal,
uncomplicated dying as their practice increasingly entangles technology
with terminal care.
The stories in this section describe the patterns of approaching our
dying, and how recognising those patterns enables us to ask for, and to
offer, help and support.
Unpromising Beginnings

It is inevitable that a career in medicine will involve seeing death. My

journey into familiarity with death began with a still-warm body, and
continued with the necessity of discussing the deaths of patients with their
newly bereaved loved ones. It was a long way from talking about dying
with people who were themselves dying, a conversation that would have
been discouraged by medical wisdom when I was training, but it was an
apprenticeship of sorts, and it taught me to listen. In listening, I began to
understand patterns, to notice similarities, to appreciate others’ views about
living and dying. I found myself wondering, fascinated, and I found a sense
of direction.

I first saw a dead person when I was eighteen. It was my first term at
medical school. He was a man who had died of a heart attack on his way to
hospital in an ambulance. The paramedics had attempted to resuscitate him,
without success, and the emergency department doctor whom I was
shadowing was called to certify death in the ambulance, before the crew
took the body to the hospital mortuary. It was a gloomy December evening
and the wet hospital forecourt shone orange in the streetlamps; the
ambulance interior was startlingly bright in comparison. The dead man was
in his forties, broad-chested and wide-browed, eyes closed but eyebrows
raised, giving an impression of surprise. The doctor shone a light in his
eyes, listened over his chest for heart or breath sounds; he examined a print-
out of the ECG from the last moments that his heart was beating, then
nodded to the crew. They noted the time of this examination as the declared
time of death.
They disembarked. I was last out. The man was lying on his back, shirt
open, ECG pads on his chest, a drip in his right arm. He looked as though
he was asleep. He might just wake up at any moment, surely? Perhaps we
should shout in his ear; perhaps we should just give him a vigorous shake;
he would surely rouse. ‘Come on!’ the doctor called back to me. ‘Plenty to
do for the living. Leave him for the crew.’
I hesitated. Perhaps he’s made a mistake. If I stand here long enough,
I’ll see this man take a breath. He doesn’t look dead. He can’t be dead.
Then the doctor noticed my hesitation. He climbed back into the
ambulance. ‘First time, eh? OK, use your stethoscope. Put it over his heart.’
I fumbled in the pocket of my white coat (yes, we wore them then) and
withdrew the shiny new tool of my trade-to-be, all the tubing tangled
around the earpieces. I put the bell of the stethoscope over where the heart
should be beating. I could hear the distant voice of one of the crew telling
someone he would like sugar in his coffee–but no heart sounds. My
observant trainer picked up the end of my stethoscope and rotated it, so that
it would pick up noises from the patient and not from the world, and placed
it back over the heart. Now there was utter silence. I had never heard
silence so solid, nor listened with such focus. And now I noticed that this
man looked a little pale. His lips were a deep purple and his tongue was
visible, also dusky. Yes, he is dead. Very newly dead. Still working out how
to be dead. ‘Thank you,’ I said to the pale man. We left the ambulance and
walked through the orange rain back into A&E.
‘You’ll get used to it,’ said the doctor kindly, before he picked up a new
chart and carried on with his evening shift. I was perplexed by the stark
simplicity, the lack of ceremony. Our next patient was a child with a sweet
stuck up her nose.
There were other, less vividly remembered deaths while I was a student,
but in the first month after I had qualified, I earned the hospital record for
the number of death certificates issued. This was simply because I was
working on a ward that had a lot of people with incurable illnesses, and not
due to any personal responsibility for their deaths, please understand. I
quickly became on first-name terms with the bereavement officer, a kindly
woman who brought around the book of certificates to be signed by the
doctor who had declared the patient dead. In just the same way as I had
seen in that ambulance five years earlier, I noted the deaths of fourteen
people in my first ten days (or perhaps it was the other way round); the
bereavement officer quipped that perhaps I should get an award.
What the bereavement officer didn’t see, though, was the massive
learning curve I was climbing. Each of those certificates was about a
person, and each of those people had family members who needed to be