Virginia L Seno of the Esse Institute here proposes three ways of addressing a person who is dying. Here they are in stark outline:
There’s a good TED talk here by Peter Saul.
Dr. Peter Saul is a Senior Intensive Care specialist in the adult and paediatric ICU at John Hunter Hospital, and Director of Intensive Care at Newcastle Private Hospital in Australia. After spending time as the Head of Discipline for Medical Ethics at Newcastle University, he is now a leading adviser to the State and Federal health departments.
Some notes and quotes from the talk:
“How we die lives on in the minds of everybody who survives us.”
Dying in intensive care is 7x more stressful than dying anywhere else.
1 in 10 of us will die in intensive care. In the US 1 in 5 and in Miami 3 in 5.
6 out of 10 of us will die of increasing frailty after a final year of acute disability.
“Increasing longevity means more old age, not more youth.”
The obstructive cultural issue: we don’t want to talk about it.
One small idea: let’s all of us have the conversation about how we want to die. The key question: “In the event that you become too sick to speak for yourself, who would you like to speak for you?”
The big idea: give people control over their dying; to”reclaim death from the medicalised model in which it’s going.”
Euthanasia is a sideshow.
“You matter because you are you, and you matter to the last moment of your life.” — Dame Cicely Saunders.
Posted by Vale
I have never loved cars. I side with H.G.Wells when he said that everytime he saw an adult on a bike ‘I no longer despair for the future of the human race’. Or Orwell when he said ‘Four wheels bad, two wheels good’. Or something like that.
But I do understand that some people feel differently, lavishing all sorts of devotion on the mechanical brutes. Even so very few cars are loved enough to have their own obituary. Jimmie Johnson’s Daytona 500 race car No. 48 was one of those special cars. It’s a tragic story that starts with the patient facing its emergency team:
Ten men in matching black-and-blue jumpsuits surrounded the $250,000 car and readied for surgery. One held a motorized saw. Another yanked his gloves tight. Their job was to bring life back to a car in critical condition.
Jimmie, the driver who crashed this beauty, is clearly not the story. Doctors looked at him and, seeing he was only shaken up, focused back on the real victim of this Daytona scrimmage.
“It’s like the ER,” Malec said. “After someone gets into an accident, you clear out the wound, cut it open and find out if she’s curable.”
Mechanics cut out the firewall…Off came the hood, too, like a chest being cracked, so the parties could see the car’s guts. The engine, all 358 cubic inches and 800 horses of it, was salvageable. The rest of the car’s front not so much.
Mechanics crowd round. There is much waving of spanners and the like (forgive me, I am not technical). But in the end not enough could be done and:
They rolled the 48 onto a platform. It lifted the car above the hauler’s main cabin and into the top compartment, behind the pristine backup. In the front of the 48, an open hose still puffed steam, the last breaths of the great machine that gave its life on Lap 2, Turn 1 of the Daytona 500.
I was relieved that the poor thing was carried away on a ‘pristine’ backup. It’s what we’d all want for a loved one. Terrific stuff. You can read the full story here.
The Natural Death Handbook, Fifth Edition
A thoroughly updated and revised edition of the Natural Death Centre‘s celebrated handbook. Now presented alongside a new collection of essays on death, dying and funeral practices by doctors, historians, authors, poets, theologians and artists including Richard Barnett, David Jay Brown, Dr Sheila Cassidy, Charles Cowling, Bill Drummond, Stephen Grasso, Maggi Hambling, Graham Harvey, Gary Lachman, Nick Reynolds, and Dignity in Dying.
It’s out in May 2012!
Fran and her Mum on her 70th
Fran Hall, a funeral industry practitioner of many years’ standing, much admired by the GFG, now works as a consultant. She is also the newly-appointed Chair of the Natural Death Centre. For years Fran successfully managed to balance detatchment and empathy in her professional life, so how did it feel when one of her own died? Here, she tell us.
It’s a rum thing, this death business. You can familiarise yourself all you like with the subject, read every book, article or blog there is to read, immerse yourself in working daily alongside the dying or the dead, consider yourself an expert on the ‘D’ word, and then suddenly you find yourself wrong-footed, knocked sideways out of theory by a swipe from the cold bony finger of the grim reaper.
For years I have grown a reputation for knowing all about death. From humble beginnings as a (completely untrained) funeral arranger, through qualifying with a diploma in funeral directing and then veering slightly sideways to participate in the fast expanding world of natural burial as a marketing manager, I have explored many avenues, and gained some notoriety within the business at the same time. I have sat with stunned, weeping families, bathed cold stillborn babies, collected broken bodies from the roadside or train tracks, cut decaying corpses down from loft hatches with white faced police constables standing by, dressed little children in their pajamas or favourite outfits, coordinated plans for huge ceremonies that needed roads closed and police escorts, conducted hundreds of corteges, written and delivered numerous ceremonies, and been intimately involved every time with the people I served.
I considered myself pretty sorted when it came to dealing with the emotional stuff, checking in with how each contact was impacting on me and those around me, crying sometimes, but not often – you find a way of assimilating some of the worst things you see, and you support each other, because people outside the hidden world of undertaking just don’t get it. Nothing really got through the defence system I created, not enough to impact on me. I was on top of it, cool with mortality, and therefore cool with the fact that at some point it would be my body on the tray in the fridge, or the body of someone that I loved…
And currently, the body of my mother is lying in a fridge somewhere within Kings College Hospital. She’s been there almost exactly a year. She died on January 23rd 2011, and what remains of her will probably be cremated sometime in 2014 in some godforsaken crematorium in South London. Her decision to leave her body to medical science was something we all applauded when she produced the paperwork back in 1999, such a thoughtful, generous thing to do. I had no idea of the actual effect it would have when the time came and we were left without the comfort of a ritualised farewell to her existence. That’s what I mean about being wrong-footed.
Let me go back. It was a mercifully brief illness that snuffed out the bright light that was our mother. Always the centre of attention, glamorous, bossy, difficult and charming, she was a true Leo, a powerfully dominant matriarch at the heart of our family. The drama of being the hostess of a Grade IV glioblastoma multiforme – the most deadly of brain tumours – was only fitting for someone who shone so brightly and who numbered her friends in the hundreds. She was fit and healthy in the August, and dead four months later – sixteen weeks exactly from diagnosis. In those sixteen weeks I realised that all my years of being alongside death had been just that, a journey beside others, a second hand experience. My practical knowledge was useful – I knew how to talk to the professionals, what questions to ask, how to get the help we needed, I was able to do stuff that my brothers couldn’t, because I knew my way round the system. Emotionally it was easier for me too, I had learned how to deal with grief over the years, knew what to expect – and yet being immersed in the swirl of feelings that ebbed and flowed during those four months was something quite new.
Walking on Epsom Downs on the last all-family day out
We were incredibly fortunate, the planets had aligned themselves in such a way that we were able to give our mother the best gift, a death at home in the house where she had lived for fifty years. Not that she discussed it at all – she never once spoke about death, she refused to be drawn into any conversation about her deteriorating health, somehow complying with hospital appointments, radiotherapy sessions and visits from the Macmillan Nurses without ever acknowledging the unspoken fact that everyone knew. Out of earshot my brothers and I had long conversations, each of us at different stages of acceptance of the inevitable, but in her presence we took our cue from her and kept conversation light and easy.
The cruel indignities of a failing body are very basic, very simple things that signpost the shortening path ahead. Gradually, gradually the world closed in – in October we walked as a big family group on the Downs, by November she could no longer walk up the stairs, by December she couldn’t raise herself from a chair. The hospital bed and commode arrived, furniture was shifted and a boudoir created in part of the living room, complete with ambient lighting, feather boas and beads, candles and flowers, and drapery over the mirror so she didn’t catch sight of her features bloated by drugs. Pleasures became little and intimate – no more grand dinners or shopping for bright coloured clothes, she was happy to have her nails painted and perfume applied and to gaze for hours out of the window. We didn’t know what she was thinking, but she seemed content with her thoughts, whatever they were. And while she passed each day quietly and comfortably, we three journeyed with her towards the end, each of us in the experience, part of it, not just observing it.
We were blessed with the kindest of carers to help us in the last few weeks, wonderful ladies who arrived every few hours with gentle hands and loving hearts. They bathed her and changed her, spoke softly and cheerfully to her, marvelled at her grace and serenity and shared jokes with us while they wrote their notes before slipping away. We were able to just be with her, offering food and drink, sitting with her while she slept, changing places with the various friends and family members who came every day to see her. It was a wonderful, dreadful time, a time in which we were able to contemplate what was coming and reach a kind of acceptance, safe in the familiar surroundings of the house we had all grown up in. I know how lucky we were, so many other families aren’t able to have such a softened approach to a death.
The day before she died all of her grandchildren were together in the room – separated from the bed where she lay semi-conscious by a DIY partition, nine of them sprawled on sofas and chairs, playing cards, eating pizza, fooling about quietly to the accompaniment of ‘Nan’s music’. Probably the last sound that she heard was their laughter – it was surreal, and yet so right to have them all being normal just feet away from their dying grandmother. Each of them came and went as they wanted to her bedside, holding her hand, stroking her hair. When the older ones left that night, they all knew they wouldn’t see her again and this was one of the hardest things, seeing my children leave the house stumbling with grief and tears and holding each other tightly. The little ones wanted to stay, so we made beds for them on the floor, and they slept as we adults sat vigil with our mother as she died.
You don’t get much preparation for what to do once someone has died. I don’t mean the immediate practical stuff, like closing their eyes, laying them back onto the pillow, wiping their mouth; I mean you don’t really know what to do with yourself. She had left us irrevocably, gone. Completely gone. There were six of us in the house, my brothers and sisters in law, my mother’s dearest friend and me. Seconds ago there had been seven. It was the opposite of being in a delivery suite when a baby enters the world. Bizarre thoughts like that arise unbidden as you experience the profundity of what has occurred. Someone made tea, someone else went off upstairs to be alone, my nephews were gently woken and told, as we had promised them we would, and the adults then had to look after them and try and assuage their grief – a welcome distraction I think. After an hour or so I went out and walked in the freezing January night to an ancient oak tree a mile or so away and just sat at the foot of the huge trunk and looked at the stars, without thinking. It was beyond thoughts, that night. And beyond feelings too – it was just elemental and unconstructed and without boundary, it was death.
In the morning my sister in law and I laid my mother’s body out, washing her and dressing her and making her look lovely again after the ravages of the night before. We hadn’t rushed to call a doctor to certify the death, and we didn’t rush to call a funeral director either, choosing to keep her body at home all day to allow other family members and friends to come and be with her. This was in direct disobedience of the ‘donation to medical science’ rules, but we judged it cold enough to take the risk, and fortunately for us we got away with it (I wouldn’t recommend it to others though if they needed to ensure the donation is accepted, I had to be somewhat economical with the truth on the phone the following morning!)
Eventually, on the Monday afternoon, an undertaker friend of mine came and collected mum’s body and drove her off to her new role as a cadaver for medical students to practice their skills on. This was yet more uncharted territory, and something that I found really difficult to accommodate. I felt denied the opportunity to ‘lay her to rest’, and really struggled to get my head round the absence of a funeral. After all, that was what I did, I made funerals happen – and I wasn’t to be allowed to for my own mother – that was a real tough one for me. I ended up by substituting a funeral with what was to become the most extraordinary memorial service for her a couple of months later.
It’s been a strange journey, this one from ‘knowledge’ through experiencing to where I am now. Probably the best summary is that I am older and a little wiser – an orphan has more insight than a funeral expert. I’m still buying books on death and learning all the time from others, but the process of being alongside my dying mother has taught me more than anything.
Today is the anniversary of Fran’s Mum’s death.
Contact Fran at franhall [at]sky [dot] com
Halloween has deep roots. Through All Hallows Eve to the old pagan night of Samhain, each marks the time of year when the veil between this world and the next are at their thinnest and the dead and the living can most easily meet and mingle.
As this blog’s contribution to the celebrations, here is the Lyke Wake Dirge in probably the most famous of recent versions performed by Pentangle.
It’s a very old Yorkshire dialect song for the time spent sitting with the corpse (Lyke is an old word for corpse – think Lych Gate). It describes the journey the soul makes and the challenges it meets on the way. In a way it’s a set of instructions but, if there’s a lesson, it is that charity in life is the best way to ensure safe passage in death.
Here are the original lyrics, with a translation:
| This ae nighte, this ae nighte, Every nighte and alle,Fire and fleet and candle-lighte, And Christe receive thy saule. When thou from hence away art past, Every nighte and alle, To Whinny-muir thou com’st at last; And Christe receive thy saule. If ever thou gavest hosen and shoon, If hosen and shoon thou ne’er gav’st nane From Whinny-muir whence thou may’st pass, If ever thou gav’st silver and gold, But if silver and gold thou never gav’st nane, From Brig o’ Dread whence thou may’st pass, If ever thou gav’st meat or drink, If meat or drink thou ne’er gav’st nane, This ae nighte, this ae nighte, |
On this night, on this night, Every night and all,Hearth and house and candle-light, And Christ receive your soul. When from here away you pass Every night and all, To Thorny Moor you come at last; And Christ receive your soul. If ever you gave hose and shoes, But if hose and shoes you gave none From Thorny Moor then you may pass, If ever you gave silver and gold, But if silver and gold you gave none From Bridge of Dread then you may pass, If ever you gave meat or drink, But if meat or drink you gave none, On this night, on this night, |
With thanks to Jeff Duntemann for his translation of the Dirge. If you are interested in reading more, his page is here.
I’ve just stumbled on the best website in Britain and can’t believe it’s taken me til now. It is run by excellent people and is incredibly informative. It also tells it as it is. Where end of life issues are concerned there’s not nearly as much of this about as there needs to be. This site really is as good as any site can be.
It’s HealthTalkOnline.org. It is, they say,
a unique database of personal and patient experiences through in-depth qualitative research into over 40 different illnesses and health conditions. The results of our research are … aimed at patients, their carers, family and friends, doctors, nurses and other health professionals.
The Health Experiences Research Group at the University of Oxford … uses rigorous and systematic research methods to sample, collect and analyse interviews with individuals of all ethnic groups over the age of sixteen.
DIPEx was created by Dr Ann McPherson CBE and Dr Andrew Herxheimer after their own experiences of illness. Ann had been diagnosed with breast cancer and although she knew all the medical information, couldn’t find anyone else to talk to about what it was really like to have the disease. This, and Andrew’s experience of knee replacement surgery, prompted them to come up with the innovative idea of a patient experience website.
Our aims are:
· To share the experience of illness or a health problem and to provide support for patients and carers who may feel that they are on their own.
· Answer the questions and problems that matter to people when they are ill or have a health-related problem and to help them make informed decisions about their healthcare.
· Provide reliable, evidence-based information about illnesses and health problems
· Be an educational resource for health professionals
· Promote better communication between patients and health professionals
There’s masses of first-person information and discussion about what it feels like to have what you’ve got. And there’s masses about dying and bereavement. Simply, a fantastic resource, one where we can spend hours and hours reading and learning.
Find HealthTalkOnline here.
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.
Back in 2008 neuropsychiatrist Peter Fenwick, in his book The Art of Dying, made this observation: ‘There are plenty of papers about palliative care and pain control, but very few about the mental states during the dying process.’
It’s something that’s often discussed, the un-joined-upness of dying and death, even in hospices. The National Council for Palliative Care (NCCP) has addressed it in a new booklet, The Missing Piece. I guess there’s a pun in there somewhere. At just 17 pages it covers a lot of ground and is written with admirable clarity. It’ll cost you a tenner, and I think that’s a lot. It’s good value, all the same.
It defines the problem: ‘There is a piece of work to do on meeting the spiritual needs of those approaching the end of life, their carers and families.’ I prefer ‘dying’ to all that ‘approaching the end’ stuff. But palliative care is still awash with this sort of language – ‘life-limiting illness’ for example.
It attempts a definition of spiritual needs – a tricky thing to do. It discusses appropriate language with which to support (not care for) the dying. It talks about psychological pain as distinct from physical pain, for all that psychological pain may express itself physically. It acknowledges both that “There is a danger of medicalising pyschoogical or spiritual pain,” and that “nurses can have difficulty with … addressing concepts of spirituality.”
It acknowledges also the beneficial buying cialis pill online influence of the Liverpool Care Pathway, but notes poor levels of documentation. It considers (with a nod to Big Society theory) what ‘compassionate communities’ can do to offer support and takes into account the potential for well-meaning bungling.
As it goes forward with its work in this area, the NCPC says it welcomes comments and questions, and gives an email address.
Will it cover the ground that Peter Fenwick says it ought? Well, the NCPC booklet makes no reference to ELEs, end-of-life experiences, which Fenwick calls ‘ellies’ – deathbed visions and coincidences, and other phenomena beyond scientific explanation (for now, anyway). These are well known to carers for the dying and it is regrettable that the NCPC is shying away from them. As Fenwick says, “many carers feel that they are ill equipped to respond adequately.”
Here’s an example of what Fenwick means. It’s what he’d call a ‘take-away vision’ when a dying person behaves, at the point of death, as if someone was coming for them. A woman describes her husband’s death:
He was going unconscious. When I looked at him, he was looking fixedly at something in front of him. A smile of recognition spread slowly over his face as if he was greeting someone. Then he relaxed peacefully and died.
You can get the NCPC booklet here.
And you can buy Peter Fenwick’s book here. I really can’t recommend it highly enough.
There’s a report just out from Demos on death and dying (why don’t we get chronological and say dying and death?). It’s by Charles Leadbeater, somewhat of a hero of mine, and Jake Garber. It’s called Dying for Change. It comes out at the same time as the National Council of Palliative Care’s The Missing Piece: Meeting People’s Spiritual Needs in End of Life Care. I’ll talk about the latter another time. I would only make the observation now that the 136pp Demos report is free to download; the 20pp NCPC report costs a bloody tenner.
Here are some extracts from the Demos study to whet your appetite. The scope of the full report is wider and, of course, fuller. It also offers radical alternatives to the way we do things now. Leadbetter begins by describing the death of his father:
Bill’s death was not a tragedy. He lived a long, happy and healthy life. Some of that life he owed to interventions by the medical profession: operations to fix his knees and sight.
Without modern medicine he would not have been alive at the age of 86. Yet the medical profession that had extended his life was unable to provide him with a good way to die.
Around threequarters of deaths in the UK are ‘predictable’ and follow a period of chronic illness. Dying has become protracted,complex and painful.
Unless we can devise ways to get people to talk about how they want to live while they are dying, our efforts to improve services will be like groping in the dark. It should become standard for people reaching the end of life to create advanced care plans with
the help of friends, family members, trained peers or professionals. Evidence from the USA suggests this can dramatically reduce unnecessary admissions to hospital and
improve care.
· Training in palliative care needs to be much more widespread among doctors, nurses and care home staff at large. Too few doctors, nurses and care home staff are ready to have open conversations with people about the prospect of death and how they want to die.
· We should draw on the models of federated schools to link hospices to groups of care homes, so that hospice skills and values can migrate into care homes.
· Services should be commissioned by end of life trusts in an integrated way that bring together public, private and voluntary providers within a community. – £500 million pa
Our challenge is to help people to achieve what is most important to them at the end of life. That will require the creation of a network of health and social supports so that people can die at and closer to home, with the support of their family and friends, as well as professionals.
If we do not create this social network, then in the decades to come many hundreds of thousands of people will experience unnecessarily distressing deaths. We will die badly in places not of our choosing, with services that are often impersonal, in systems that are unyielding, struggling to find meaning in death because we are cut off from the relationships which count most to us.
Communities and families have coped cooperatively with death for centuries. Only very recently have we become heavily reliant on institutional, professional solutions – care homes and hospitals. There is mounting evidence that the services these institutions offer are costly and inappropriate. A lot of money is spent on public services that people do not want as they are currently delivered, and which are poorly designed to meet their needs.
Download the complete report free here.
