The Good Funeral Guide

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!

“Now deep in my bed I lie
and the world turns on the other side”

John Hirst

Philip Gould, one of the architects of New Labour, is dying of cancer.

In a way, he says, it’s a privilege to be in his position – to have a deadline, to be given a chance to sort everything. “I do really feel I know where I am now.” Don’t get me wrong, he says – he has loved his life, wishes he could have enjoyed pottering about in old age, hates the chemotherapy, but it’s not all negative. He’s writing a book about his cancer – the initial diagnosis, its recurrence, and now he’s in the final stage. “Death is not discussed very much, but I will write about this. I’ll finish the book.”

Is he scared of dying? He shakes his head. “From the moment I resolved and reconciled things with Gail the fear went. I don’t feel I’ve got any fear now. I think acceptance is the key. If you accept death, fear disappears.” 

“I live by the day. Just sitting in the park, looking at the flowers thinking how beautiful they are. It’s almost … not hallucinogenic but it’s a much stronger feeling than previously.”

Full article in the Guardian here. 

Cancer has taken Christopher Hitchens’ voice. Read his beautifully written essay about it 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.

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.

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.

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 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.

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.