My children can, by now, accurately predict what is coming, every time someone dies in a TV drama. Oh no, not another ridiculous death! I will say, half-amused and half-despairing. This is NOT how people die in real life!
On TV, there will be a few profoundly meaningful last words, spoken with urgency. Look after your mother! I’m sorry for what I did! The killer was Mr… (You never quite catch exactly who the killer was.) Then a bit of a gasp, and the person falls back onto the pillow / slackens in someone’s arms. Dead. There may be a bit of agonising pain thrown in, for effect.
On TV, people go from being fully aware and alive to being fully dead in a matter of seconds. Minutes at most – and that’s stretching it, usually because there is quite a lot of meaningful conversation or painful moaning or heroic resuscitation effort to fit in.
In real life, the space between any last words (meaningful or otherwise) and death is usually hours, days, weeks even. Normal people dying normal deaths just sleep more and more, then slip into semi-consciousness, then leave gaps between breaths, and at some point they simply don’t breathe in again.
TV deaths are, by their very nature, dramatic. Real deaths are usually gentle. They are rarely painful or dramatic.
This is beautifully described in With the end in mind: Dying, death and wisdom in an age of denial, an extraordinary book by Kathryn Mannix. She is a pioneering palliative care consultant, and she is on a mission to dispel our fear and ignorance about dying. She does this by telling the stories of the lives and deaths of dozens of her patients.
Here is Sabine. She is nearly eighty.
So starts the first story. And here, indeed, is Sabine, right here in my kitchen, joining me. She drinks her tea black and derides the ‘You call that coffee?’ offered by the beverages trolley. She has a French accent so dense it drapes her speech like an acoustic fog.
I am hooked. This book could be a novel, it is so beautifully written. But it is not a novel. All of it is true, and I recognise all these people. They have been my patients, my neighbours, my friends, my family.
Sabine, for example, is keeping a secret. “She, who wears her Resistance Medal and who withstood the terror of war, is afraid. She knows that widespread bowel cancer has reached her liver and is killing her.”
What follows is an account of how “the leader” at the hospice stuns the author, at the time a young and inexperienced doctor, by explaining to Sabine (and to us) in extraordinary detail what normal dying looks like, and what Sabine can expect .
‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you’re 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.’
He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.
I am also leaking from my eyes. Family, food and sleep all have to be put on hold as more and more people – whole families – keep tumbling out of the pages, joining me and my coffee, and as the night darkens, my wine.
We are no longer familiar with ordinary dying.
Few people have seen the process of dying, the gradual fading, the final breaths. Those of us working in palliative care, who have had the privilege of being alongside hundreds – if not thousands – of dying people, know that there is a pattern that is remarkably similar for most people. This predictable, and usually fairly comfortable, process has traditionally been known and understood by families, who used to watch grandparents, aunts, parents and partners die among them, often in their own beds. But in recent times, deaths have been banished to hospitals, unseen, unknown and frightening.
People with learning disabilities die ordinary deaths, too.
At the end of a talk I gave at a conference last year, someone raised her hand. Is there anything particular we should know about the final days and hours of someone with profound learning disabilities? she wanted to know. I can’t remember what I said – probably something about the need to support the family and care givers, the importance of acknowledging relationships, the recognition of the place of the dying person in everyone’s life, the magnitude of the hole they will leave behind. The questioner looked taken aback.
Is that not what you were expecting to hear? I asked her. She explained that she thought I’d say that someone with learning disabilities might need more pain killers than you or me.
Now it was my turn to be taken aback. I explained that on the contrary, dying is dying! At the end of life, the process of gradually slipping into sleepiness, then unconsciousness, is no different for people with learning disabilities. At the end of life, in the process of dying, equality reigns. It is the social circumstances, the relationships, the support on offer, the access to necessary pain medication (usually no more, but also no less than you or I might need) that can make dying unequal.
Kathryn Mannix’ book is a gift.
I urge you to buy, borrow or beg a copy. It will make you more prepared for dying and more prepared for living. It shows us how ordinary people die, and how we can all embrace life because of it. Because we are all just ordinary people. And that includes people with learning disabilities.
It may not make for gripping TV. But it is rather reassuring.