End-of-life issues – Page 6 – The Good Funeral Guide

Wish me luck as you wave me goodbye

5 January 2011

Charles

8 Comments

Categories: Books, celebrants, ceremony, Dead people's rights, End-of-life issues, Formality vs informality, funeral plans, Good books, Plan your own funeral

Me and the missus are getting down to some serious death planning. There’s no best time of life for doing this, of course, so long as you get it done afore ye croak. And the more I think about it, the more clearly I can see that it’s not an activity whose end result is, phew, done it. No, I think that once you start you need to, want to, keep at it, continuously revising, adding, elaborating. Which is why I’d now have all children start making death plans at the age of 8, and do something useful in their PSHE lessons. When’s too soon to introduce Mortality to the curriculum?

The process is going to be interesting and tedious. We are impelled by necessity mostly, of course, or thoughtfulness to put a positive spin on it: we don’t want to be remembered by higgledepiggledness and fly-blown filing systems. So there are the who-gets-what decisions to make, the legal stuff, and also the horrible physical phase towards the end to strategise – the advance decision to refuse treatment, powers of attorney, then, when we’re done, organs, tissues and carcass disposal. And that’s not all.

Our relicts will want to commemorate us, we reckon, in their own way, and we shall encourage them to think about the myriad ways they can do that, giving not a fig for convention. I really don’t know that any of those ‘what he/she would have wanted’ considerations apply when you’re dead, bar the religious/superstitious ones, and we don’t have any of those.

So we’ll leave it to our relicts to decide if they want or need to have funerals for us. That’ll probably depend a lot on the nature and duration of our separate demises and how they feel about us after we’ve been wheeled away with a sheet over our heads – a matter, for us, of just deserts.

What, after all, is the value of a formal secular funeral shorn of all theological rationale? It is but a symbolic farewell event and also a commemorative event. Well, there are lots of ways of saying a one-off last goodbye, just as there are uncountable ways of commemorating someone. In any case, commemoration is ongoing, lifelong, both solitary and communal. It is about contemplation and recollection with added celebration or denunciation. We start doing that when people who mean something to us are still alive. When they’re dead it’s the type and degree of missing that makes all the difference – or the type and degree of animosity.

It’s a tendency of secular funerals to try to get too much done. Done, I suspect, and dusted. Some funerals resemble holiday suitcases, bulging, straining at the zip, bursting with biography and favourite tunes. Secular funerals are best when they’re not busy, when they’re not trying to get everything tidily, comprehensively bundled; when they’re reflective and contemplative and touch on the essence of somebody. Most of them need to leave more out.

Having in mind that when the history of the world is written neither my wife nor I will get a mention, not even in a footnote, we don’t feel a great debt to posterity. It’ll be nice, though, to leave behind letters to people. Nice and necessary.

Where my two nieces are concerned my exemplar is going to be Richard Hoggart’s Memoir for our Grandchildren, published in Between Two Worlds. It’s not a grandiloquent memoir. Far from it. It is an account by a working class orphan of those members of his family that he knew in childhood. It’s family history. It tells his grandchildren where and who they came from – it’s genetic geography. And it’s important, because what we learn about blood relatives tells us a lot about ourselves and it’s necessary knowledge, as any adopted person will attest. Hoggart writes beautifully in a plain, objective style and I recommend this book to you.

Hoggart writes formally and chronologically. This morning I stumbled on a less formal sort of memoir, the nang seu ngam sop. Nang seu ngam sop? The traditional Thai funeral ceremony book. In the words of the Wall Street Journal:

In Thai funeral tradition, books about the deceased are printed and distributed to people who come to pay their respects. Some are thin pamphlets, others, large volumes. The practice, mostly for those in the middle or upper classes, gained popularity in the 1880s and reached its peak in the mid 1900s. Within its pages are poems, personal writings — and recipes.

I really like the idea of this sort of ragbag miscellany. A fine commemorative and biographical item easily bashed out on a home printer. Greatly to be preferred to the sound of a celebrant revving up to 180 words a minute then blurting “XXXX was born on…”

End of life care for the homeless

17 December 2010

Charles

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Categories: End-of-life issues

The NHS has just published this booklet: End of life care – achieving quality in hostels and for homeless people. It is “designed to provide a practical guide to support hostel staff in ensuring that people nearing the end of their life receive high quality end of life care.”

The average age of death among homeless people is around 40-44.

Download it if you’re interested here.

Famous last moments

6 December 2010

Charles

5 Comments

Categories: Attitudes to death, dying, End-of-life issues, medical interventions in dying

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.

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.

Broken survivors

13 November 2010

Charles

1 Comment

Categories: Attitudes to death, End-of-life issues, euthanasia, Good death

Superb if gruelling documentary examining end of life issues from PBS.

One of the contributors is Judith E Nelson, professor of medicine at the Mount Sinai School of Medicine and associate director of Mount Sinai Hospital’s Intensive Care Unit:

The burdens of intensive care can be very, very heavy, and the outcomes are often not good. So we have to face this extraordinarily difficult challenge of knowing when to use this miraculous technology and for how long and knowing when to try to preserve for people a peaceful and dignified process of dying. Walking that line is the very hardest part of my job, and constantly recalibrating myself from one side of it to the other.

Although we can never be 100 percent certain until the moment of death that someone is dying, there are clinical situations where the odds are so overwhelming that someone can[‘t] survive the hospitalization in a condition that they would find acceptable, that we can see that outcome and compare that with the burden of the treatment. When it is virtually a foregone conclusion that that unacceptable outcome is going to occur, then using this technology to support the physiology of the patient doesn’t make sense. And it is invasive, and it’s burdensome.

It’s a situation in which a person is completely dependent for all of their care on a nurse and a physician; where the patient cannot even attend to their most personal care and has to be cleaned from head to toe and every buy cialis new york place in between by another individual; when they’re not even awake. And our nurses do that in the most unbelievably respectful way, but still, it’s a part of this experience. It is being attached to machines with constant noise from alarms and signals. It is being surrounded by electrical devices and monitors, with no control over any of your bodily functions, quite literally. And although we strive as hard as we possibly can to prevent discomfort, it’s probably impossible to prevent it at every moment. So there are discomforts, and one hopes rare but occasional pain and other kinds of distress, fear, delirium. All these things are occurring for people.

In addition to that, you’re in a bed that has side rails to protect you from falling, but also may make it more difficult for the people who love you to get close to you. Even if there’s open visiting in an ICU, which some ICUs have and some don’t, it is not a place where loved ones move about freely. They’re uncomfortable and unhappy and fearful. And all of that is part of the surrounding. So it’s a very disconnected, depersonalizing and occasionally even painful and frightening experience. I don’t think anybody wants to die that way. I think most of us, not everybody, but most of us would be willing to go through it for a good outcome, but nobody wants to be like that if nothing good is going to come of it.

Full interview transcript here.

It’s what she would have wanted

4 November 2010

Charles

9 Comments

Categories: Attitudes to death, death and funerals, End-of-life issues, funeral plans, funeral poetry

Here’s a new poem by Wendy Cope published in the current Spectator. I hope she’ll forgive the flagrant breach of copyright and see this instead as a promo. Its sentiments are very contemporary.

My Funeral

I hope I can trust you, friends, not to use our relationship

As an excuse for an unsolicited ego-trip.

I have seen enough of them at funerals and they make me cross.

At this one, though deceased, I aim to be the boss.

If you are asked to talk about me for five minutes, please do not go on for eight

There is a strict timetable at the crematorium and nobody wants to be late

If invited to read a poem, just read the bloody poem. If requested

To sing a song, just sing it, as suggested,

And don’t say anything. Though I will not be there,

Glancing pointedly at my watch and fixing the speaker with a malevolent stare,

Remember that this was how I always reacted

When I felt that anybody’s speech, sermon or poetry reading was becoming too protracted.

Yes, I was intolerant, and not always polite

And if there aren’t many people at my funeral, it will serve me right.

Lifed off

3 November 2010

Charles

2 Comments

Categories: End-of-life issues, prisons

As you read this Big Rinty is dying in Shepton Mallet prison. Big Rinty? You wouldn’t know of him unless you’d read Erwin James’ columns in the Guardian or his books. Big Rinty is one of the long-term prisoners with whom James became friends during the twenty years of his life sentence. Here’s James:

Rinty was sentenced to life in 1976. He served 18 years and was released in 1994. After three years, during which he worked and lived an honest, industrious life, he was arrested and charged with assault.

The jury at his ensuing trial returned from their deliberations after eight minutes. “Not guilty,” said the foreman. Any other defendant would have walked free. But Rinty, on “life-licence”, was recalled to prison, requiring “psychological assessment”, said the official blurb on the paperwork. He played the game for a while, completed a couple of “offending behaviour” courses. But eventually grew tired of the dishonesty of it all.

“That psychologist is nuts,” he proclaimed after several consultations. Finally, he withdrew from co-operating with her schemes and programmes. [Source]

And now he’s dying.

I went to see him at the time in the hospital where they had put him in his own little room. He was a pathetic sight. He was laid on his back with tubes in his mouth and up his nose attached to bags of liquid hanging from a frame above his bed. Most pathetic of all was the chain attaching his wrist to the wrist of the prison officer who was sat next to him engrossed in a dog-eared copy of Hello! magazine. Another prison officer sat on the other side of the bed twiddling his thumbs and thinking about the overtime money this extra guard duty was earning him. The Gambler was already there when I arrived. We shook hands and then I leaned over and held my poorly friend’s hand tight. He smiled a painful smile and said, “For fuck’s sake don’t make me laugh…” I think he thought I was smiling, but I turned away and looked at the Gambler – we had both welled up. ”Hey,” Rinty said, “it’s me that should be crying.” … A few weeks ago he was taken out to the outside hospital again for “tests.” He calls me once a week [from prison]. The past couple of calls started with the same question. “Any news on the test results?” The medics seemed to be taking their time. Yesterday I had a message on my answer machine. “Rinty here, just checking in. I need to speak to you.” The tone of his voice was ominous. I phoned the prison and asked the chaplain to go and tell Rinty I was waiting for his call. Half an hour later the phone rang. “It’s not good mate,” he said. “I’ve got pancreatic cancer – inoperable.” [Source]

I asked him about chemotherapy. “What, so I can live longer in here?” he said. He said he has decided he is not going to have chemo – but then when he asked about compassionate release he was told he couldn’t have that if he refused chemo as he might get out, undertake chemo and end up living more than the prescribed three months maximum allowed. [Source]

Find other GFG posts about death and dying in prisons here, here and here.

Letting go

22 October 2010

Charles

3 Comments

Categories: Attitudes to death, Death; Good death, dying, End-of-life issues

Rhoda Partridge took up painting when she was 70. Now 90 she’s still hard at it. Her spirited life has also embraced scuba diving, gliding and ceramics.

In an interview in this month’s Oldie magazine she is asked:

Do you find that after 70 years you live in the shadow of death?

She replies:

Oh pouf! Pocket full of crap! I think it could even be a good experience. We are beginning to be better about death, allowing people to die quietly, not to stick needles and drips in them. It’s important that the person who’s dying is allowed to die, that you hold their hand, tell them you love them and let them go. One of my sons has promised to look after me through my death. I would like all my children to come and talk to me one at a time. But I don’t want them all moaning around me.

Blessed are the risk-takers

30 September 2010

Charles

16 Comments

Categories: End-of-life issues, Plan your own funeral

There’s a strong feeling among funeralistas that making money out of death is wrong, naff, reprehensible. This is good news for consumers. I’ve met a good many vocation-driven undertakers who could charge far more than they do but they won’t because they think it’s… wrong. Ironically, even the greediest, porkiest undertaker will lend his or her voice to indignantly and righteously denounce a celebrant who charges much more than a retired priest.

My own credibility (such as it is) is founded in the fact that I can’t make what I do pay. In any other industry this foolhardy indigence would earn me derision. In Funeralworld it is my indispensable calling card, my most disarming attribute.

I don’t buy all this. I think that the labourer is worthy of his or her hire. If you can be of use to someone, send them a bill which reflects your value and their ability to pay. Wish I could.

The newly-launched end-of-life planning service Lovingly Managed has attracted some tsk-tsk-ing. But it serves a need which no one else is serving, a need which is going to grow as the population ages, grows spectre-thin and dements. There are aspects to end-of-life planning which, to many, will be either difficult to get your head around or just plain tedious. Necessary, though. Will writing. Lasting Power of Attorney for the time when you lose your wits. An ADRT for the time when you want them to leave you alone. Information and guidance about body donation, assisted dying, tissue donation, financial planning, funeral planning. Who’s going to look after the dog? There’s a lot to it. Lovingly Managed sit down with you, take you through it and fill out the boring paperwork – just like my accountant and, recently, my brilliant mortgage person. “Sign here.” Done. Worth every penny. You love people like this too.

Lovingly Managed is run by expert, ethical people headed by a solicitor. They present no threat to anyone else in Funeralworld: they are plugging a gap. Have they got the tone right on their website? Not yet, perhaps, in places, I don’t know. No worries. They’re bright so they adapt. I’ve spoken to Denise Jones who heads it up. I like her. A lot. People need what she and her team are doing.

Another busy bee in this emerging niche market of end-of-life planning is Paul Hensby at MyLastSong. This is one of those sites where you record your plans and wishes – you buy yourself a virtual box and fill it up. When I first saw the site and detected its commercialism I tsk-ed a bit. It gets to you, this sniffiness, doesn’t it? Well, he’s working bloody hard to make it work. He’s a nice guy. Is MLS what people want? Don’t know til you try, do you? I really don’t see why not.

To do something new requires vast reserves of self-reliance and stubbornness and reckless optimism. You think you’ve got a winner, that’s what sustains you through the dark days. The best ideas and the worst ideas, we remind ourselves, are greeted equally by cries of “It’ll never work!” You never know til you try. Let’s acknowledge the courage it takes to take risks.

Check out their websites. While you’re at it, vote in the poll on the MLS website – top right on the home page.