what does dying feel like?

HealthTalkOnline

18 March 2011

Charles

2 Comments

Categories: death and funerals, dying, End-of-life issues, what does dying feel like?

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.

To accept what cannot be helped

14 February 2011

Charles

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Categories: Attitudes to death, Good death, what does dying feel like?

A very good account here by Ann Hulbert of her mother’s response to being told she had an incurable cancer:

Two years ago this coming June my mother—“an 80-year-old in a 60-year-old’s body,” the pulmonologist told her—was ambushed by a diagnosis of Stage IV adenocarcinoma of the lungs … In the windowless examining room at the hospital in Brooklyn, my mother said sadly yet matter of factly, “Well, I guess that’s pretty much what I’ve been expecting to hear. We’ve all got to go somehow, don’t we?”

In her case, facing it meant ruling out treatment—the chemotherapy and radiation that the pulmonologist urged to ease pain and eke out a few more months. “If geezers like me have lots of tests and treatments,” she told the doctor, “there isn’t going to be enough money to spend on the other end. This health-care mess isn’t going to be fixed if we aren’t ready to get out of the way.”

[S]he was a rarity—a grandmother in favor of having the plug pulled and ready to live, or rather die, by that all-but-taboo vision of the end of things. But right then, in that airless room, she needed most of all to rise above an abyss. Look at me, a very lucky old lady who has made it to 80; tell me it makes any sense to rack up huge bills trying to add on an extra couple of months (at best) to a life that isn’t likely to last out the year.

As soon as she’d gotten the cancer verdict, she wanted to dispense with the probing, so expensive and so intrusive. She wanted to escape the dingy hospital corridors, the endless waits, the nurses who dragged their feet and addressed her and my father as though they were dim children, the doctors who urged procedures knowing she was a patient with top-notch health insurance.

All of us wanted what she wanted. Or so we had been saying. We had mostly been believing it, too, and admiring her consistency in sticking to her pull-the-plug approach. How it cut through the confusion, the indecision about competing options, the intimidation in the presence of doctors who had plainly never paused to consider that a patient might simply opt out of their white-coated realm. How it pulled us together—that alone recommended her way, we had been saying, anxious to reassure ourselves that respecting her desires wasn’t just right, but wise. Her clarity didn’t come so clearly to us four. Reared on more than our mother’s staunch Swissness, we were baby boomers, accustomed to intervening and only distantly acquainted with death.

Read the rest of Ann Hulbert’s account of her mother’s dying. It’s a wonderful piece of writing full of things to reflect on. Click here.

Materialism gone mad and the what’s-it-all-about question

26 November 2010

Charles

6 Comments

Categories: Assisted suicide, Attitudes to death, Death; Good death, Good death, medical interventions in dying, what does dying feel like?

Here’s an interesting piece by Peter Popham in the Independent, first published in May. I’ve only just found it.

He begins by talking about Christopher Hitchens, who has oesophageal cancer, and how impending death has reconfigured his identity:

“…when the bitter laughter dies away, there is Hitch, locked away from healthy us, in a land where, he discovers, the powers of argument and invective that have made him so widely loved and feared and admired are no longer of any relevance.

“That will be a massive but passing frustration for him, because he has other, more weighty problems on his plate. But it should be a matter of reflection for the rest of us, because we have made of Hitch a modern sage, one of the people we turn to to put us right about things. And suddenly, with death breathing down his neck, what he has to say is of no use to him, and is no use to us, either. He has failed us, and in his blunt way he comes clean about the fact. We treated him like a wise man, but it turns out he was just a clown.”

Which brings him to his point:

“Death is a problem for our age as it was not for ages past, precisely because (speaking of the non-religious majority) we behave as if it were a problem we had already solved.”

But we haven’t, of course.

“Church-goers are confronted week in week out with images of agonising death, talk of the “mystery” of death, exhortations to prepare for it, prayers for those approaching it … But in spurning all that we also spare ourselves the weekly dousing in the fact of mortality. And this allows us to go through life as children and animals do, giving the ugly fact that we won’t be here very much longer only the occasional fleeting glance. Then comes the stroke, the aneurysm…”

He then considers those unbelievers and atheists who confront their own demise with equanimity and courage,

“who face the fact of their dying calmly and soberly and treat the disposal of their own life as if it were merely another item in the will … But there is a delusion at the heart of this activity … And the delusion lies in believing that the self is a fixed, unchanging entity, while one’s life is something distinct and separate from it which we can enjoy like an ice cream when it is in good shape but may discard like poison when it turns bitter.”

He quotes the example of a woman who tried to kill herself rather than suffer a long and horrible death. She failed. Popham draws this conclusion:

“Her error lay in having arrived at a commodified view of life, as if it were a piece of property whose disposal was entirely her own business: exactly the sort of mad idea that our materialistic society breeds. Whereas the truth is that the self, to the extent that one can speak of such a thing, is in constant flux, one’s expectations from life are in constant evolution, and nothing we do is “our own business” – everything impinges on everything else in the universe.

We needed to rouse ourselves from the sleep of superstition, but in doing so we have collapsed into the narcosis of materialism. And waking from that to the reality of death is a far nastier matter.”

Read the whole article here.

Normalising death

23 November 2010

Charles

2 Comments

Categories: Attitudes to death, bereavement, Books, dying, End-of-life issues, what does dying feel like?

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.

Demos report: Dying for Change

15 November 2010

Charles

2 Comments

Categories: Attitudes to death, Care homes, Dead people's rights, dying, End-of-life issues, euthanasia, Good death, Secular approaches to death, what does dying feel like?

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.

One man’s date with death

19 August 2010

Charles

3 Comments

Categories: dying, Humanists, Secular approaches to death, what does dying feel like?

You saw the news that Christopher Hitchens has cancer? I suppose we all wonder how we would feel and conduct ourselves were the news to be broken to us, so there is something compelling about listening to and observing someone else for whom the dread summons has come. Here are some extracts from what Hitchens wrote for Vanity Fair:

I have more than once in my time woken up feeling like death. But nothing prepared me for the early morning last June when I came to consciousness feeling as if I were actually shackled to my own corpse. The whole cave of my chest and thorax seemed to have been hollowed out and then refilled with slow-drying cement. I could faintly hear myself breathe but could not manage to inflate my lungs. My heart was beating either much too much or much too little. Any movement, however slight, required forethought and planning. It took strenuous effort for me to cross the room of my New York hotel and summon the emergency services

…

The notorious stage theory of Elisabeth Kübler-Ross, whereby one progresses from denial to rage through bargaining to depression and the eventual bliss of “acceptance,” hasn’t so far had much application in my case. In one way, I suppose, I have been “in denial” for some time, knowingly burning the candle at both ends and finding that it often gives a lovely light. But for precisely that reason, I can’t see myself smiting my brow with shock or hear myself whining about how it’s all so unfair: I have been taunting the Reaper into taking a free scythe in my direction and have now succumbed to something so predictable and banal that it bores even me. Rage would be beside the point for the same reason. Instead, I am badly oppressed by a gnawing sense of waste. I had real plans for my next decade and felt I’d worked hard enough to earn it.

…

Against me is the blind, emotionless alien, cheered on by some who have long wished me ill. But on the side of my continued life is a group of brilliant and selfless physicians plus an astonishing number of prayer groups.

Not that Hitch is turning to God, of course. Not all Christians are praying for him, either. And a lot of his political enemies are delighted. One of them concluded a blog post thus: “Happy dying, Hitch, you sick, seedy, disreputable fucking bastard.” No stranger to controversy, our Hitch.

Read the entire article here.

Thought for the day

24 May 2010

Charles

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Categories: what does dying feel like?

From Rebecca Solint’s A Fieldguide to Getting Lost:

All through childhood you grow toward life and then in adolescence, at the height of life, you begin to grow toward death. This fatality is felt as an enlargement to be welcomed and embraced, for the young in this culture encounter adulthood as a prison, and death reassures them there are exits. “I have been half in love with easeful death,” said Keats who died at twenty-six and so were we, though the death we were in love with was only an idea then.

The D-Word

27 January 2010

Charles

No comments

Categories: bereavement, dying, Grief, what does dying feel like?

There’s a new book out about dying and death. It’s called, appropriately, The D-Word. Now, there’s a heap of books out there about long-term care of the very ill; there’s another heap about bereavement. We don’t urgently need more of them. But there’s hardly anything out there about grim D. We do urgently need more D-books.

I didn’t feverishly tear it free from its Amazon packaging. Two reasons. I know the author, Sue Brayne, slightly. On a personal level I like her a lot. She’s absolutely not one of these too-nice-to-be-true people you can meet too many of in the death industry. She tells it as it is. We met at a conference of conjoined quangos which has now re-badged as Dying Matters. I blogged about it intemperately at the time. I sounded off in the street afterwards as I walked with Sue to the station. She made no objection to the f-word, either. I honour her for that. I very, very much don’t want to not like her book.

Second reason? The father of a good friend went to hospital a fortnight ago. After conducting batteries of tests, the people who work miracles, the doctors, had that conversation with the family where they make it gently clear that, this time, there’s no cure, just care. He’s going to die. Probably quite soon. Unthinkable? No, they all knew it would happen sometime; he’s been getting old fast recently. But thought about? Not much. Some things you don’t think about till you have to.

So what my friend, and his family, and his dad all need is somewhere to go where they can find out about this business of dying. They need information. And because news like this can make you feel very lonely, very disconnected, they need to know how it felt for others, too, so that they can set their experience in a broader context. And for all the well-meaning advice I have been able to offer them, and not very much at that, it’d be so much better to have a book to recommend.

Come to think of it, I need some advice, too, on how to conduct myself towards this dying man and his family. I like them all very much. I’ve known them for years. They are good people. It’s going to be really hard.

So: reviewing Sue’s book isn’t an exercise in judicious objectivity. Bluntly, it had better be very good or I’m going to feel badly let down.

And the good news is that it is superb.

Sue sets out her stall: “The D-Word is based on the lived, felt, human response of what it’s like to die.” Her method? To tell it “through the personal narratives of relatives, friends and carers”. Sue draws conclusions from these stories. She also gives us lots of useful information and, by doing so, a language of dying. Literally. A vocabulary. So that we can talk about it and understand the hazards of not talking about it – and the hazards of talking about it in treacherous euphemisms.

Sue covers the ground. A little potted history tells us how we got to be so death denying. She examines the value of an existential explanation – a faith (though she doesn’t cover atheism). She examines how professional carers regard dying. There’s an excellent chapter about survivors of violent or sudden death, what helped and what didn’t. She talks about both where to find support and how to give it. She tells us how to support the dying. And she tells us what dying feels like, much of which is the fruit of her years of research with Peter Fenwick. She does all this in just 165 pages. She has interviewed the best possible people, and must be congratulated on finding them. She has even tracked down one of the UK’s best and nicest undertakers, James Showers, whose definition of a funeral is, I think, both moving and brilliant. A funeral, he says, transforms “a fact – that someone has died – into a ritual that is authentic and relevant to those who were close to that person, to help them say goodbye in public and with meaning … to turn their grief into something beautiful.”

I don’t know how many copies Sue has sold yet – it’s early days. She’s just sold another. I am sending one to my friend as soon as I have posted this. Thank you, Sue.

You can buy the book from Amazon. As recommended as it gets. Find it here.

11 January 2010

Charles

No comments

Categories: what does dying feel like?

Eighteen months ago Tony Judt was, by his own description, “a 61-year-old, very healthy, very fit, very independent, travelling sports-playing guy”. He had a slight shortness of breath walking up hills and found himself hitting the wrong keys when he typed, nothing more.

Then in September 2008 he was diagnosed with motor neurone disease, a progressive degenerative illness that causes the cells which control movement to die.

Read the full and excellent article in the Guardian here.

Thanks to Carla.

Carla

10 December 2009

Charles

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Categories: what does dying feel like?

I don’t know if you follow Carla Zilbersmith’s blog. It’s not an easy read. She’s very clever and talented and funny, a brilliant writer, the kind of person you like and admire a lot, and she’s dying of amyotrophic lateral sclerosis (ALS), which in the UK we call motor neurone disease (MND). She writes about this in all the moods that strike her, but never self pity. Never. This is how she begins her most recent post. It’s entirely typical:

I was in the hospital last week. I went in with completely unrelated symptoms, but was diagnosed once there with walking pneumonia. At the very least, this is an ironic diagnosis for somebody who can’t walk. At best, I believe I have an ADA lawsuit on my hands. Rolling pneumonia, fine. Boogie-woogie flu, maybe. But not walking pneumonia.

She’s made a calendar with other ALS sufferers:

Just in time for the holiday season comes a calendar that is guaranteed to put a smile on your face and inspire you beyond measure. Thirteen models with ALS in various stages in the progression of the disease have donned their sexiest garb (or in some cases have shed their garb) to show you that we are willing to bare our bodies for a cure!

The calendar’s theme for 2010 is the silver screen. ALS models reenact memorable moments from such movies as Basic Instinct, Braveheart, Risky Business, and Cabaret to name a few. Each picture prominently features the medical equipment of the model in question.

The models in this calendar range in age from 23-69. We are both male and female. We are grandparents, aunts and uncles, parents of children too young to lose us and we are children too young to be lost. We want to show the world that people with ALS are just like them and that ALS can strike anyone anywhere. We want to help ALS-TDI raise badly needed funds for ALS research. Here’s how you can help: Buy this calendar. Buy ten! Give them to friends and family and tell them about us.

And I tell you about this because Carla says I must:

You guys have to get off your butts and order the calendar. You also have to send the link to all of your friends. Even if they just read your e-mail and don’t buy the calendar, the way I typically read chain e-mails and break the chain, they will still know something about ALS.

Check it out here.

Carla has also released her latest and last album, Songs About Love, Death and Wings. Check it out here.