Kathryn Mannix, With the End in Mind: Dying, Death, and Wisdom in an Age of Denial (William Collins 2017)
Kathryn Mannix is a British doctor specialising in palliative care. She brings to this book 40 years’ experience of tending to people who are in the process of dying. Death, she says in her introduction, has become increasingly taboo. The vast improvements in healthcare in the last hundred years
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 behavioural change that saw the sickest people being rushed into hospital for treatment instead of waiting at home to die.
While these changes have been of immense benefit to countless people, they have changed our sense of what is normal when it comes to dying:
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 machinery of life preservation.(Page 2)
It’s time, she says, to talk about dying, and she gets the conversation rolling by telling 30 death stories.
I approached the book with a sense of dread: did I really want to read story after story of people dying? The dread was misplaced. The exemplary nature of the stories is always there, and names etc have been changed to protect people’s privacy in the manner of clinical case studies, but these are compelling stories of recognisably real people facing extreme challenges. There are moments of horror, and moments of enormous relief – more of the latter than of the former, as palliative medicine exists for the sole purpose of relieving suffering ( mental and spiritual pain as much as physical). If I have to die, and if it’s from some other cause than a piano falling from the sky or the long leaching away of dementia, I want Kathryn Mannix or a similar death-midwife to be there to help manage the process.
Early chapters introduce the idea of a recognisable dying pattern. Contrary to the image often presented by movies and so on, panic and terrible pain aren’t part of that pattern. In a number of the book’s stories, a doctor or nurse describes this pattern to someone who is nearing death, or to those at their literal or figurative bedside (‘Look, see what’s happening now,’ they say, quietly). The first description comes when Mannix is in training. A hospital patient with a terminal illness is terrified of dying, and with the patient’s assent, Mannix’s leader describes to her what dying is like. His description takes several pages. Here it is, omitting the specifics of the scene, such as Mannix’s initially shocked reactions and the patient’s increasing relief:
‘What we expect to happen from now on is that you will just be progressively more tired, and you will need longer sleeps, and spend less time awake …(Pages 19–20)
‘As time goes by, we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma. I mean that they are unconscious …
‘So if people are too deeply unconscious to take their medications for part of the day, we will find a different way to give those drugs, to make sure they remain in comfort ….
‘We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they are actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious. And so, at the very end of life, a person is simply unconscious all of the time. And then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, and then, very gently, the breathing slows down, and very gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful …
‘The important thing to notice is that its not the same as falling asleep. In fact, if you are well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’
That is the guts of the book: both the common pattern and the usefulness of talking explicitly about it. Mannix isn’t prescriptive or doctrinaire. People face their own imminent death and that of loved ones in ways that are particular to each person. There are stories of people who simply don’t want to acknowledge that they are dying, and there are deaths that don’t follow such a peaceful course. One of the most moving stories is the one about Sally, who remains relentlessly optimistic even when it’s evident to everyone around her that she’s dying. The dilemma of the palliative care specialist is captured in a moment when Mannix has tactfully attempted to point out that the dying process has begun, but Sally insists on talking cheerfully about beating her cancer:
This was exactly the same coping style Sally had used of old: downplay the negatives, emphasise the tiniest positives, pretend it will all be fine, make plans for the future. She seemed unaware of her true situation, but a single glance at Andy [her husband] told me that he was fully alert both to the devastation that was unfolding, and to his wife’s inability to contemplate it.
What will happen if I say ‘Hospice’? I wondered. Will she find an excuse? Will she be shocked? Will she dismiss me? Will all her denial come crashing down around her? How on earth do I play this?(Page 75)
The suspense is genuinely huge. I won’t spoil it except to say that the resolution manages to be respectful, kind and smart – and as in many of these cases it’s arrived at by the grieving family as much as by the professionals.
This is the kind of book that prompts autobiographical reflection, especially if you happen to be older than 70. I’ll spare you my thoughts about my own mortality, but there’s a terrific little section on talking about death to children, that prompted me to try to remember how I was introduced to it. Mannix says that at around the age of seven children understand that death happens to everyone, and a little later that it will even happen to them. I’m pretty sure I knew about death well before I was seven: my father would cut off the heads of chickens with the axe for special occasions, and we routinely sold cattle to the butcher. When one of us little ones cried too long or too loudl, my mother would say, cheerfully, ‘You sound like Paddy the bull. I’ll sell you to the butcher.’ There’s more: by the age of seven (Grade 3 in convent school), I wasn’t particularly worried about death, because I’d known for some years about heaven and hell, and terror of hell made death seem pretty much like a non-event. No doubt that early experience influences my emotional response to the subject of death in ways I’m not aware of, but I do know that I am hugely relieved that, for me as a thinking feeling being, death is the end of life and not a transition to anything.
It’s also a book that makes one wonder about cultural differences. It sure looks as if the NHS ensures that dying people are much better cared for in Britain than in Australia. And it’s hard to imagine this book written in a US context. What on earth would USians do in place of all those cups of tea-and-sympathy? Given what we’re told about healthcare in the US, an equivalent book written there would feature only the affluent, leaving a great silence about the uninsured who are doomed to die without access to Dr Mannix’s palliative care specialist teams?