Why am I still here?

When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

First there was the cancer diary. Nigella Lawson’s husband John Diamond wrote one, you remember. Since the advent of the self-published blog countless people have died out loud.

Next, boomers started writing about the slow and distressing decline of their parents. You’ll find an example here.

Now those boomers are old enough to write about their own dissolution and are doing so to debunk the myth that too-long life is an unmitigated good thing. In last week’s Spectator magazine Stewart Dakers (77), reflecting that the reaper has changed from terminator to tormentor, dwelt on the horrors of longevity with both dread and splendid prose. Here are just a few extracts:

The existential reality of decline is aggravated by the prospect of total physical and cognitive disintegration, the details of which are well known to us, so we live in physical discomfort and mental terror. Old age has graduated into a form of pre-traumatic stress disorder.

We are a waste of space on a seriously overcrowded planet. We are in the way and those who are most impeded are the young. We can see this and are, of course, ashamed of ourselves.

My advice to young people is simple. Eat, drink, even smoke, and be generally merry, because that way you might be spared too many days of misery for yourself and your friends and family. Live short and prosper.

Old-age rational suicide will be with us any day now, just you see.

Hinterlands between the living and the dead

We didn’t cover the Dia de los Muertos, the Day of the Dead celebrations on 1 & 2 November. Perhaps that was an oversight. It’s a colourful and intriguing festival of great interest to Westerners. Those from cultures influenced by Protestantism tend to be a bit tongue-tied in their relationships with their dead.

The Dia de los Muertos is much envied by those who feel that their own culture has forgotten how to commemorate the departed. But is it culturally informative, or is it no more than a cultural curiosity?

Held to coincide with the Feast of All Souls, the Dia de los Muertos is the result of the incomplete colonising of a pagan festival by militant Catholics. Its origins are Aztec and it possesses a quality of incoherence which seems not to bother anyone very much. In its original Aztec incarnation the Dia expressed the belief that the living and the dead co-exist. Christian teaching, on the contrary, tells us that our dead go far, far away.

Our own Hallowe’en is, of course, the product of another such marriage of incompatibles, in this case between Christian All Souls and the pagan Samhain, held at that time of the year when the door to the Otherworld opens wide enough to allow the souls of the dead to return for a brief time. Again, not at all Christian.

In an increasingly secular society, where the spectrum of spiritual beliefs is very great, it is useful to have the examples of other cultures to plagiarise and adapt – repurpose, to use the modern idiom. We can probably expect to see a growth in the variety of commemorative observances as people increasingly find the courage to do whatever it is they feel they need to do no matter what anyone else might think.

Maurice Saatchi, for example, breakfasts every day with his dead wife, Josephine Hart, at her grave. He’s not a fan of the moving-on/closure school of grieving. He says, “In my view, to move on is a monstrous act of betrayal and to come to terms with — I think I’d call that an act of selfishness.”

Saatchi’s wifes’s death has even enabled him to redefine his own identity: “The reality of it is that she is me, I am her, we are one . . . I am Josephine Hart, I can put it no stronger than that. It is no different now from what it has always been; we have always been one person.”

The on-trend hinterland between the living and the dead is currently that occupied by zombies. Of ancient African origin, contemporary portrayals of zombies are derived from the slave culture of Haiti, where, according the Amy Willentz, ‘the only escape from the sugar plantations was death, which was seen as a return to Africa, or lan guinée (literally Guinea, or West Africa) … The zombie is a dead person who cannot get across to lan guinea,’ and is thereby condemned to an eternity of backbreaking toil in the sugar plantations under the rule of cruel overseers.

Wilentz goes on: ‘There are many reasons the zombie, sprung from the colonial slave economy, is returning now to haunt us. Of course, the zombie is scary in a primordial way, but in a modern way, too. He’s the living dead, but he’s also the inanimate animated, the robot of industrial dystopias.’

Leaving aside industrial dystopias (together with ghosts and angels), let’s finish by considering the living dead – those kept alive by modern medicine; those who inspire all the debates we’re having these days about assisted dying.

The Liverpool Care Pathway has come under fire in recent months. Doctors have been prescribing it without consulting some families. Hospitals have been incentivised to apply it to living dead people in order to effect economies in healthcare.

The Liverpool Women’s NHS Foundation Trust received £1.03m for doing just that in the last financial year.

Seeing it through

In the summer edition of the Oldie magazine (strapline: ‘Everybody buys it eventually’), Mavis Nicholson discusses the case for the ‘right to die’. She says:

I had a conversation with an even more elderly chap than me, a GP all his working life, who was in very bad shape. He said he thought it was too potentially dangerous to allow people to choose their death or for relatives to have a say in the matter — or doctors and nurses for that matter. “It’s not that I don’t trust people,” he told me. “On the whole I do, though I think I am pretty wily and watchful as well.” No, he thought we should see it through to the end. “That’s what I have done in my family affairs,” he said “through all the trials and tribulations there have been in that quarter. I fought in the last war and saw that through with gritted teeth, I must admit. My job has been very full on, but in the end I am glad I have seen my way through the undergrowth and found life’s clearings, you might say. And I’ll see myself into the final clearing, I hope.”

Time’s up, take yourself out

A theme that we like to explore on this blog is the way in which longevity has reconfigured the landscape of dying. The blessing of long life has its downside: protracted decline. We are likely to linger longer, much longer, than our forebears. There’s a physical cost in chronic illness and possibly, also, mental enfeeblement. There’s the emotional cost to the elderly and their families. And then there’s the financial cost, which the government has wrestled with and now kicked deftly into the long grass.

In the Sunday Times Minette Marrin wrestled with it, too. I’ll have to quote a lot of it because the ST website is paywalled. She suggests some interesting solutions:

Last Thursday the Office for Budget Responsibility (OBR) announced in a chilling report that the escalating costs of an ageing population will mean yet more national austerity. Pointing out that the proportion of people over 65, who now make up 17% of the population, will rise to 26% by 2061, it estimates many increased costs, in care of the elderly, health and pensions, amounting to an added £80 billion a year in today’s money.

In the next 20 years, the number of people over 70 is set to rise by 50%, reaching nearly 10m, according to the Office for National Statistics.

The OBR states that Britain’s public spending will be “clearly unsustainable” over the next 50 years, despite the spending cuts. So, far from care for the elderly rising above today’s inadequate standards, it is almost certain to fall further below them. There’s no money now and in future there’s going to be even less. 

Universal bus passes (which cost £1 billion a year), winter fuel allowances (£2 billion) and free television licences must go. 

Everyone must accept that their savings, including their homes, may have to be spent on paying for care in old age. There’s no universal right to leave one’s property to one’s children.

Taxes of all kinds must rise hugely, or else there will have to be a large hypothecated tax upon people reaching old age. Services to old people must be reduced … Health service care must be rationed for the very old. Palliative care of every kind should be available, but not ambitious treatments.

There should be fewer old people. I’ve often felt the best thing one can do for one’s children is to die before real infirmity sets in. The taboo against deliberately shuffling off this mortal coil, as people did in other cultures in the interests of younger people, is wrong. Most people say they never want to be a burden to others in old age; it would be good if more of us felt able to prove we mean it, by taking a timely and pleasant walk up the snowy mountain. Especially since there’s no money left. [Our bold]

Source

Who says?

“The current law exists to protect those who are sick, elderly, depressed, or disabled from feeling obliged to end their lives. It requires every case to be reviewed by the police and the DPP to determine whether a prosecution is appropriate. The present law protects those who have no voice against exploitation and coercion, acts as a powerful deterrent to would-be abusers and gives discretion to judges to temper justice with mercy in hard cases. The current law does not need changing.”

Dr Peter Saunders, Campaign Director of Care Not Killing

The Commission finds that there is a strong case for providing the choice of assisted dying for terminally ill people. Even with skilled end of life care,
the Commission finds that a comparatively small number of people who are terminally ill experience a degree of su+ering towards the end of their life,
which they consider can only be relieved either by the ending of their life, or by the knowledge that they can end their life at a time of their own choosing.

Download (free) the Commission on Assisted Dying report here

An Instinct for Kindness

From the review in the Guardian:

Last year Chris Larner took his ex-wife Allyson – with whom he had remained good friends – to the Dignitas clinic in Switzerland where she ended her life. It was a life that had become unbearable because of the constant pain, indignities and limits imposed upon her by multiple sclerosis, a condition she had lived with for more than 25 years. Allyson decided that enough was enough.

It is its total lack of sentimentality that makes it so moving, and half the audience is in pieces long before the end. That, and because the redoubtable Allyson is so fully present in the show. Planning her own funeral, she declares: “I don’t want any stiff upper lip. I want weeping and wailing and inconsolable.” This was not a woman to go gently into that good night, and this is a show that reminds us that how we die is as important as how we live.

Death with dignity

Posted by Charles

When Meg Holmes was diagnosed with brain cancer in 2009 her husband Andrew started a blog so that he could update friends about her condition.

Meg died on 1 October. The following post describes her death.

My wife Meg died on the morning of Saturday October 1st in the loving company of her brother, sister, son, daughter and husband.

Suffering from a disease that robs one of intellect and dignity, she had the option, as a Washington resident, to choose the time of her death. She used the provisions of Washington’s “Death with Dignity” Act to hasten her death, while she was still able to converse with and understand her family members. (Oregon has long had a very similar “Death with Dignity” act, Vermont and Massachusetts are considering one).

Her family gathered on Friday and spent the day with her. She was much more alert and animated than of late and visited with each of us. Despite knowing that her death was the next day, we all slept well that night (I slept much better than for many weeks), showing us that we were prepared for her passing.

Social workers (she met privately with one from hospice and one from Swedish Hospital to affirm her decision) and the volunteer from Compassion and Choices Washington all remarked on her readiness (and that she had not been ready the previous week).

The volunteer from “Compassion and Choices Washington” showed immense skill and empathy in helping Meg and in caring for us. 

Meg died peacefully and quickly, with no signs of discomfort. It was a remarkable end to a long struggle, and released Meg from what we all knew could be a long, distressing, undignified and inevitable end. Our preparations, the company of relatives, Meg’s peaceful passing and the knowledge of her command of the situation all served to make her passing much easier for us all. 

Find Andrew’s blog here.

Grateful thanks to the excellent Death With Dignity blog for alerting me to this. Find it here.

Timing your exit

Posted by Charles Cowling

Extracted from an article in yesterday’s New York Times: 

I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life”. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.” 

Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do. 

But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months. 

Years ago, people hoped that science could delay the onset of morbidity. We would live longer, healthier lives and then die quickly. This is not happening. Most of us will still suffer from chronic diseases for years near the end of life, and then die slowly. 

Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside. We are never coercively going to give up on the old and ailing. But it is hard to see us reducing health care inflation seriously unless people and their families are willing to do what Clendinen is doing — confront death and their obligations to the living. 

My only point today is that we think the budget mess is a squabble between partisans in Washington. But in large measure it’s about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon. 

Lessons applicable to the UK, obviously. Read the whole article in the NYT here. If you missed Dudley Cleninden’s piece, read it; it’s brilliant and important. Here