Category Archives: medical interventions in dying

Taboo or not taboo?

Monday, 3 September 2012

 

 

Posted by Michael Jarvis, onetime Manager of the Natural Death Centre

 

For very many people in the UK ‘death’ is a subject left unmentioned. If you are reading this then you are part of a minority. A minority, furthermore, who would generally like to see more public openness regarding dying, death and funerals. We know the benefits: peace of mind from discussing one’s individual wishes, removing an unnecessary burden of decision-making from the bereaved, possible financial advantages from advance planning, and so on. 

Death seems to be a taboo subject for many, but does the general reticence to mention death, let alone discuss it, make it so?  We need to understand how it this has come to prominence. It wasn’t around in the time of our Victorian forebears despite their sensibilities in many areas (skirts on piano legs, for example). Rather, it was paraded with openness in art and literature and surrounded by a great deal of etiquette and ritual. Type ‘Jay’s of Regent St’ into a search engine to see details of a whole store devoted to mourning dress and accessories. So what happened in the last century to bring about such a seismic change? 

First, war and a pandemic. The First World War brought death on such a massive scale that repatriation was not feasible and Victorian and Edwardian notions of mourning were unsustainable. The scale of loss of life was immediately surpassed as a result of a global ‘flu pandemic and in the aftermath ‘death’ as a subject began to be swept under the carpet.  

Second, and there’s a degree of irony here, better living. In the 20’s and 30’s homes fit for heroes might have been a bit thin on the ground, but improvements in medicine and sanitation brought about a significant rise in life expectancy which had been less than 50 years for both men and women in 1900. Conversations which began “We should talk about what happens when I die” would increasingly be answered by “Don’t be silly, you’ve got years ahead of you!” 

Third, and perhaps most relevant, is the simple fact that death is now largely institutionalised. Death happened in Victorian homes; now the event is most likely to occur in a hospital, outside the home and away from friends and family. It is most likely too that they will not see the body which will be removed by undertakers. Undertakers themselves would prefer the use of the term ‘funeral directors’, another example of the dead being at a distance from the family.  

Taboo? Perhaps on reflection it’s not so much that death is a forbidden topic as that for many people death happens to others, elsewhere, and is dealt with by someone else. And here’s the rub, denying the existence of death is unhealthy. Unless we can change that mindset we run the risk of creating psychological problems and we lose control: control of that which we wish for ourselves, that which will ease the pain of bereavement and even lessen the likelihood of family disputes and squabbles.  

Put bluntly it is my view that we would all be the  better if more people felt able to have conversations about death and its various implications. Projects such as the Good Funeral Guide and the Natural Death Centre have done and are doing sterling work but there’s a lot that individuals could do. Think of all the clubs and societies in your area – from the W.I. to Rotary via Probus, Lions, Mothers’ Union and countless others, the one thing they have in common is that from time to time they struggle to find speakers. Offer your services. Challenge them to put death on the agenda.

 

Time’s up, take yourself out

Monday, 16 July 2012

 

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

Doctors need to grieve, too

Wednesday, 20 June 2012

 

 

There’s an interesting piece in the New York Times here about the emotional difficulties doctors experience when working with people who are going to die. People often characterise doctors as cold and uncaring when, in fact, they may simply not be coping:

We found that oncologists struggled to manage their feelings of grief with the detachment they felt was necessary to do their job. More than half of our participants reported feelings of failure, self-doubt, sadness and powerlessness as part of their grief experience, and a third talked about feelings of guilt, loss of sleep and crying.

Our study indicated that grief in the medical context is considered shameful and unprofessional. Even though participants wrestled with feelings of grief, they hid them from others because showing emotion was considered a sign of weakness. In fact, many remarked that our interview was the first time they had been asked these questions or spoken about these emotions at all.

Even more distressing, half our participants reported that their discomfort with their grief over patient loss could affect their treatment decisions with subsequent patients — leading them, for instance, to provide more aggressive chemotherapy, to put a patient in a clinical trial, or to recommend further surgery when palliative care might be a better option. 

Unease with losing patients also affected the doctors’ ability to communicate about end-of-life issues with patients and their families. Half of our participants said they distanced themselves and withdrew from patients as the patients got closer to dying. This meant fewer visits in the hospital, fewer bedside visits and less overall effort directed toward the dying patient.

Oncologists are not trained to deal with their own grief, and they need to be. In addition to providing such training, we need to normalize death and grief as a natural part of life, especially in medical settings.

To improve the quality of end-of-life care for patients and their families, we also need to improve the quality of life of their physicians, by making space for them to grieve like everyone else.

ADRTs — who does and who doesn’t

Wednesday, 4 April 2012

 

From a letter in the New York Times:

Older adults who do not formally convey their treatment preferences to loved ones create a distressing situation in which children and spouses must make emotionally draining (and costly) decisions about whether to continue or stop life-extending treatment.

As Ms. Jacoby points out, one obstacle to planning is a reluctance to discuss and confront one’s own demise. Yet my research, based on interviews with more than 7,500 Americans, points to another important obstacle: money. Many people complete their advance directives as part of their estate planning; the living will is written up along with one’s will and other documents to protect one’s assets.

But many people with few financial assets to protect do not take the important first step that often kicks off the advance care planning process. People in the lowest quartile of assets are only half as likely as those at the top of the assets ladder to have a living will, to appoint a health care proxy or to discuss their treatment preferences with loved ones.

Source.

Good short life, short good death

Sunday, 10 July 2011

Leonard Cohen, Dance Me to the End of Love, London 2009

Posted by Charles Cowling

 

I HAVE wonderful friends … one, from Texas, put a hand on my thinning shoulder, and appeared to study the ground where we were standing. He had flown in to see me.

“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with. 

In addition to wonderful friends, New York Times journalist Dudley Clendinen has ALS, commonly called Motor Neurone Disease in the UK. In a very powerful piece he describes what he’s going to do about it.

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines. 

No, thank you. I hate being a drag.  

I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free. 

He’s not going to do anything to prolong his life:  “Lingering would be a colossal waste of love and money.”

Read the whole beautifully thought, beautifully written piece here.

Roundup

Tuesday, 1 March 2011

Here’s a roundup of news stories I’ve tweeted in the last fortnight. It looks rather a lot — but I try never to fob you off with quantity at the expense of quality. I hate having my own time wasted, so I try hard not to waste yours. Take your pick and enjoy — or gobble the lot and gorge yourself.

Before you do, though… If you missed last night’s Dispatches on end-of-life care, do catch it on 4OD. I don’t know what you’ll think of it — or did, if you’ve seen it. For me, it was the contrast with the care given to those at the start of life that most struck me. We don’t have elders in our society, it seems, only disgusting old people.

 

 

 

Upgrade work at Shrewsbury crem ditched. Aren’t crems easy targets of cuts?! http://bbc.in/dK68PX

 

Satan’s undertaker’s online memo site is http://bit.ly/eRn1HT Is it any relation of this: http://bit.ly/ebnw8e? Wha gwan?

 

Priest makes off with bones of child saint – http://bit.ly/gCyKd4

 

“The Freudian implications of filming a sex scene in the shadow of a soaring obelisk” – http://bit.ly/g4fTKF

 

Some interesting #funeral industry analysis here- much that is typical – http://bit.ly/elobdS

 

“Now that I’m dead, I want to tell you a few things.” Last letters. I love this site – http://bit.ly/cRpFuX

 

DeathRef Death Reference Desk

by GoodFunerals

Happy Valentine’s Day darlings. http://fb.me/T6DJ7iOE

 

What’s the fuel cost of a cremation in the UK? Guess! Okay, I’ll tell you… £16.25

 

Lovely topical mezzotint on the Morbid Anatomy blog today – of two dissected hearts. Typical! http://bit.ly/eI5iHw

 

Nice wheeze for a floral eulogy here – http://bit.ly/hqaHTd

 

Bio-cremation “could warp metal pipes and burn crematorium workers” – http://lat.ms/i2d1m3

 

Bad guys always go to the funeral. That’s the place to arrest them -http://bit.ly/ekDmpj

 

The Top 20 Most Inappropriate Songs To Play At A Funeralhttp://youtu.be/MkYXS4CDU6Y

 

Really nice sendoff here culminating in a Viking funeral for the ashes – http://bit.ly/gugn2j

 

My Big Fat Gypsy Funeral? I’d like to see this – http://bit.ly/eYplL0

 

Malidoma Some and the power of ritual. A great man. Catch him here: http://bit.ly/eY9h8T

 

“Trad Brit stiff-upper lip has melted into a wobbling lower one.” Is modern grief incontinent? http://bit.ly/hXrfKA

 

Click on ‘Progressive Conservatism Project’ at the Demos website and you’ll get this: ‘That page could not be found’ !!!

 

“The great thing about being old is that you don’t give a bugger about people’s opinions anymore.” Dolly Frankel.

 

Very good booklet here from cancer.net spelling out for terminal patients their end-of-life options – http://bit.ly/fflu8r

 

“E’body wants a good death but not a moment too soon, but they don’t have the language to ask for it.” http://bit.ly/g3JWCW

 

“I knew something was terribly wrong with my marriage when I planned my husband’s funeral.” Great first line! http://bit.ly/eDVnEY

 

“Webcast funerals are dehumanizing – the necessity of human contact requires the physical presence of mourners.”http://bit.ly/eUYVQT

 

A classic illustration of the systemic incapability of corporate FDs to provide a good service – http://wapo.st/gh1pMf

 

Would the sale of Bretby crematorium amount to ‘privatising death’? Well, it’s a good question – http://bit.ly/ekH9jp

 

’26 babies buried together in a wooden box along with unidentified limbs and bones.’ They do this in the US. Shame!!http://huff.to/gaBdyu

 

Teacher makes her final journey in her VW camper van. Touching story, this – http://bit.ly/faIUHh

 

‘So recently directing medical care, now we are awkward bystanders.’ Hugely humane doctor’s response to death -http://nyti.ms/hbx8iC

 

RIP trolling. New to me (but maybe not to you) – http://bit.ly/hf2ikY

 

What’s responsible reportage and what’s voyeuristic grief porn?http://bit.ly/hIehDs

 

Mourning glory – the Banshee. Real or myth? Good stuff here -http://bit.ly/gY7nH4

 

The family is dead? 368 direct descendants at funeral of L’pool matriarch – 17 lims followed the hearse – http://bit.ly/hq6rMz

 

A funeral at a rugby ground. Great venue, great sendoff -http://bit.ly/gBs9F1

 

2 biggest comps you can pay an FD: You look nothing like an undertaker; this place is nothing like a funeral home -http://bit.ly/eKUEVm

 

Some very touching condolence messages on this online memorial site – http://bit.ly/e68jq3

 

Interesting reflections by ASD folk on weddings and funerals -http://bit.ly/eJyc8d

 

Great story here + pics: the funeral of racehorse Man o’ War, embalmed (23 gals) and casketed – http://bit.ly/idcYp0

 

StNeotsFunerals Andrew Hickson

by GoodFunerals

Our new Funeral Price Estimator is up and running online. Open and honest and proud of it.http://www.kingfisherfunerals.co.uk/costs.html

 

US undertaker offers end-of-life workshops. I like this.http://bit.ly/erO8zM

 

Love this irresistible free offer from the Neptune Society -http://bit.ly/i86PaI

 

‘After my sister died I went through her computer and deleted everything questionable so my parents wouldn’t find it.’http://bit.ly/fgqYzN

 

Online memorial site of the day: last-memories.com. Great twinkly backgrounds. And it’s free! http://bit.ly/fC1V7y

 

Oh dear, SCI in the doo-doo again. Are these big corps systemically inept? http://bit.ly/fPq7mh

 

Good piece in the HuffPo here on end-of-life planning -http://huff.to/gqZDUF

 

DIY suicide causes horrible death, claims EXIT. Time to legalise? http://bit.ly/ffDoI1

 

Oz police shut the pubs when there’s an Aborigine funeral in town. Racist? http://bit.ly/eIrtbE

 

 

A time to die

Sunday, 30 January 2011

Every week in the Spectator magazine Peter Jones takes an occurrence or development in contemporary society and politics and considers it in the light of what the ancients did when faced with the same circumstances. This week he considers the art of dying. I’d now bung you a link but I can’t: the Speccie does not unleash its content online til it has gathered some dust. The joy of the Spectator lies in the quality of its writing (sadly not its politics). It’s almost worth the cover price for Mr Jones alone. I hope he won’t mind a quote-strewn precis.

He begins:

“So everyone is going to live much longer and will therefore have to work much longer to pay for their pensions. But what is so wrong with dying, Greeks and Romans would ask?

“Homeric heroes sought to compensate for death with eternal heroic glory … Plato argued that the soul was immortal. The Roman poet Lucretius thought that was the problem. For him, life was an incipient hell because of man’s eternal desire for novelty. So as soon as he had fulfilled one desire, he was immediately gawping after another. What satisfaction could there be in that? The soul was mortal, he argued, and death, therefore, should be welcomed as a blessed release.”

Cicero concurred. We run out of things to interest us and are glad to go. “A character in one of Euripides’ tragedies put it more succinctly: ‘I can’t stand people who try to prolong life with foods and potions and spells to keep death at bay. Once they’ve lost their use on earth they should clear off and die and leave it to the young.’

“For Seneca the question was whether ‘one was lengthening one’s own life — or one’s death.’ “

Jones concludes: “Marcus Aurelius put it beautifully: ‘Spend these fleeting moments as Nature would have you spend them, and then go to your rest with a good grace, as an olive falls in season, with a blessing for the earth that bore it and a thanksgiving to the tree that gave it life.'”

Famous last moments

Monday, 6 December 2010

Death mask of Ulysses S Grant

Here is a minuscule excerpt from a wonderful, sonorous account of the death of ex-President Ulysses S Grant. It’s not what we get any more, is it, the last deathbed moments of celebs and justifiably famous people? How, when we think of it, we wish we did. Public figures die so much more privately in an age when information has never been more freely available.

On a personal note, if I am ever engaged as a celebrant I always try to elicit an account of the last days and hours. People appreciate the opportunity to talk about it – it’s cathartic. And it establishes an intimacy which makes it much easier to gather information. When a grieving person has talked about the death they can talk about anything. Top tip.

All eyes were intent on the General. His breathing had become soft, though quick. A shade of pallor crept slowly but perceptibly over his features. His bared throat quivered with the quickened breath. The outer air, gently moving, swayed the curtains at an east window. Into the crevice crept a white ray from the sun. It reached across the room like a rod and lighted a picture of Lincoln over the deathbed. The sun did not touch the companion picture, which was of the General. A group of watchers in a shaded room, with only this quivering shaft of pure light, the gaze of all turned on the pillowed occupant of the bed, all knowing that the end had come, and thankful, knowing it, that no sign of pain attended it — this was the simple setting of the scene.

The General made no motion. Only the fluttering throat, white as his sick robe, showed that life remained. The face was one of peace. There was no trace of present suffering. The moments passed in silence. Mrs. Grant still held the General’s hand. The Colonel still stroked his brow.

The light on the portrait of Lincoln was slowly sinking. Presently the General opened his eyes and glanced about him, looking into the faces of all. The glance lingered as it met the tender gaze of his companion. A startled, wavering motion at the throat, a few quiet gasps, a sigh, and the appearance of dropping into a gentle sleep followed. The eyes of affection were still upon him. He lay without a motion. At that instant the window curtain swayed back in place, shutting out the sunbeam.

“At last,” said Dr. Shrady, in a whisper.

“It is all over,” sighed Dr. Douglas.

Much much more here. A darn good 20 mins reading.

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