Janice Turner opines in The Times 2nd December, without adding that her suggestion would also save lots of money. Since 80% of health spend is in the last year of a patient’s life, much utilitarian good could be achieved by more honest debates in families, between spouses, and in GP oncology clinics. Should there be an “incentive” for making an advanced directive? Of course, since health care is not officially rationed, such a suggestion necessitates a change in legislation – and honesty.
My father died in the early hours and when his care home called to tell me, they asked about “arrangements”. Only then did I realise we hadn’t made any. Could he stay just a few more hours while I consulted my mother? (I didn’t wish to wake her yet, 200 miles away and alone.) No, his body must go, right now.
It is the protocol of many homes to whip away the deceased. Undertakers remove the dead discreetly by the back door. It is thought better that the old don’t ponder bleakly upon mortality, witness their own inevitable fate. So the next day they just see Maisie’s empty place at breakfast, pass her room being cleared. We blinker horses to keep them calm.
Death regrets: I have a few. Not things left unsaid. (Much is covered by “I love you”.) But failing to face the inevitable; not making plans. He was terminally ill, for God’s sake. Why did I not probe to find out exactly how long he had, so he didn’t die alone? The last days are hard to predict, I was told. But I was scared, squeamish, didn’t press to know more.
I’d carried these thoughts around unspoken for five years, until on Wednesday I attended a “death café”. This is not some sinister gothic coffee shop but a group of strangers gathering to address the subject we find hardest to discuss. (There is cake, which helps.) And death, it quickly transpired, is not a single issue but a field almost as rich as life itself.
One woman recalled sitting with her declining father while over many sessions he reviewed his whole life as if it were a book or a play. A man described his mother’s insistence on giving her body for medical research. When he objected, saying students might take her corpse to the pub, she replied: “If they have fun with me, that’s great. And anyway, this is not about you!” Yes, death is for the dying. But what about afterwards? She wanted no memorial: the family ignored her. Should the dying have a right to dictate the grieving rituals needed by those left behind? Do they have obligations to write goodbye letters, to tie up loose ends, or do we now ask too much? We moved on to our own deaths: we were all middle aged, yet no one had done more than write a will . . .
It was fascinating; we could have gone on for hours in a thousand directions from legacies to the afterlife. Sad but uplifting, it was the most fulfilling conversation I’ve had for months. No blathering small talk, just big, profound stuff. Unlike the usual dinner party topics (bloody Brexit) it left us all feeling closer, not more divided. We were all just fading, fallible humans trying to make sense of our remaining allotted time.
The death café movement was founded by Jon Underwood, who died this year aged 44. He pursued the mission of the Swiss sociologist Bernard Crettaz to liberate death from “tyrannical secrecy”. Underwood believed that our anxieties, depression and addictions are fuelled by refusing to confront our most basic fear. He organised death cafés in music festivals, offices, front rooms. Some attendees are young people for whom death seems wholly hypothetical, others are old or sick, looking for solace and truth. “Death denial,” he said, “is the energy that drives the motor of consumer capitalism.” Stay calm, go shopping, carry on.
The café I attended was part of the International Longevity Centre conference where Professor Douglas Davies of Durham University remarked that we divide into “death thinkers” and “death avoiders”. The latter generally swerve other difficult conversations, about relationships or personal failings. “Life style and death style,” he said, “tend to converge.”
Our whole society is death avoidant. Most of us will die in hospitals, not at home. I’ve never seen a corpse. My family believed children shouldn’t attend funerals, so when both my grandmothers died I stayed home helping northern matrons to butter ham rolls. Now there is a trend for funerals without the dead: unattended “direct cremations” followed by a broader celebration of a life. Some people, such as the author Anita Brookner and David Bowie, insisted upon no funeral at all. As if a loved one just disappears. It is the very opposite of Indians by the Ganges throwing sandalwood upon a pyre.
Although I’m otherwise quite forthright, I realise now that I shut down my father when he tried to talk about death. “If I’m here then . . .” he’d intone when discussing future plans. He was always trying to tell me where important papers were kept “when anything happens”. Oh, don’t be so morbid, Dad, not now.
But when? Death cafés, like bereavement groups and counselling, are secular substitutes for the religion we’ve lost. Without faith it is harder to navigate mortality, to formulate new rituals rather than repeat those reassuring ancient words. It is even harder to break down the modern medical notion that death must be sanitised because it is too ghastly and somehow unhygienic to look at head on.
The end-of-life care organisation Gold Standards Framework gives every person with only a year to live a gold card. This allows them the right to assistance and counselling at any time and priority at hospital admissions, because they have so little time to waste. It suggests that care homes put an icon — a butterfly, a dove — on a resident’s door when they are nearing the end, so their neighbours are forewarned and can perhaps say goodbye.
Our lives will not just be longer but more tapered: fewer sudden ends, more time to plan for death. We should not be smuggled in shame out the back door, but leave with honour through the front.
Update 6th December. Letters from 5th December in the Times:
Sir, May I make some additions to Janice Turner’s list of things to do before your parent dies (“Life would be better if we faced up to death”, Dec 2)? Get the best snaps of them out of your phone and into framed prints to put about the house. They will offer a sense of the warmth and continuation that those made up afterwards just won’t. I like the suit I bought for my mother’s funeral but I would feel better about it if she had seen me in it beforehand. And had I visited the cemetery where she was to be buried while she was alive, I would have done so from a position of relative strength. Instead I now associate it only with bleakness and bereavement.
When you get the call, make it over to the care home as soon as you can. Only in retrospect did I realise that my mother’s spirit seemed to be in the room as my father and I visited, waiting for us to show up before flitting away. Say what you need to say, and make it sound good. If a relative can’t make it over, put them on speaker phone.
Unfortunately, denial is often the easier option. Anything on a list of “things to do before they die” will get pushed back because of the implication. If you complete the list, does that mean they then die? Still, if you behave as if every fortnight might just be your parent’s last, you will avoid putting off the big decisions.
Sir, I have been involved in my local hospice’s project “Everything in Place”. The object is to get people to think about their demise, set out what their wishes are, help those left behind sort out the paperwork and to know what is to be done, even the hymns, if there is to be a service. We started with small attendances at our sessions. Frequently we heard stories from elderly people who had tried to discuss it all with their offspring but the latter would not consider it. As we progressed the sessions became bigger and more popular, covering questions about wills, lasting powers of attorney, funerals, services, maintaining memories.
I am a retired solicitor, and in my career lost count of the number of times when people died without leaving everything in place, no will and no wishes expressed. Frictions develop among families and between siblings, including guilt from those who have not visited for some time. Disagreements build up about the funeral, the hymns, who should have what. Indeed, I have seen such friction develop to an extent that people never speak to each other again. It is childish in many respects but it happens all too often.
If only people would grasp the nettle. We are all going to die, but with minimal effort we can ensure that everything is in place, people know what our wishes are and, when death occurs, all concerned can be at peace and harmony with each other, with families still speaking and indeed more closely bonded than they were before. It is so easy to do, but the benefits and results are phenomenal.
Sherburn Village, Co Durham
Sir, Janice Turner may be encouraged to know that, at Morecambe Bay NHS Foundation Trust, death cafés are now part of our junior doctors’ training; the people who treat us also need to understand their own thoughts on this issue. The fascinating thing is that when we run these cafés they naturally become springboards for deep conversations on the future of the NHS and how healthcare should be developed. Are our educators missing a trick?
Chaplain, Royal Lancaster Infirmary