Regrets of the dying

 

Over on Inspiration and Chai Bronnie Ware describes how, working in palliative care, she would often find herself listening to people’s regrets – all the things they wished they had done in their lives. Some common themes emerged. This is her top five:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

Bronnie’s written a book based on her experiences. You can find it here.

Bereavement Counselling in the NHS (Taking the sting out of death)

Posted by Vale

Pat is a Bereavement Counsellor working in an NHS Trust hospital. Her job is to help people affected by a death in a hospital, supporting them through their grieving. Pat is the subject of a long article inSaturday’s Guardian. It can be found here.

It’s a heartening read. Death in a hospital can be a very fraught business. Treatment, perhaps in intensive care, is hard to comprehend, and the workings of the institution are often alienating and frustrating to people who want to support someone they love at the end of their lives. And death comes in so many forms that it’s sometimes difficult simply to come to terms with what has happened.
Pat’s role – carried out, it is clear, with great love and understanding –  is to help people come to terms with what has happened. Sometimes it is a matter of looking at notes, talking to doctors and taking time to explain why someone died. Sometimes it is just about making space for grief. Pat:

“has a mantra that “nothing is wrong in grief”. She almost always honours requests from bereaved relatives, however unusual. A common wish is to touch the body of a loved one: hold their hands, or kiss their foreheads or even wash their face. One woman asked Pat if she could help her retrace the journey her 15-year-old daughter’s body made from the hospital to the mortuary, after she died from a very protracted illness. She then wanted to see where she had been blessed in the mortuary. “And there’s nothing wrong with that,” she says.”

It’s good to know that hospitals are recognising that the death of a patient is both an ending and, for bereaved family and friends, the beginning of another vital process – the need to grieve, mourn and say farewell. Important too that they recognise that their role in this next stage is crucial. Reading about the work that Pat does, however, did make me want to ask more questions about the way that the NHS treats people at the point of death.

If there is recognition of these human issues after death, is there the same concern for people as they die? How well are patients supported at those last moments? How easy is it for people to sit with the person they love; hold them and comfort them; share in the business of dying?
I’ve tried to find the relevant NHS guidance, but with little success. I did, however, turn up a Scottish NHS report called Shaping Bereavement Care – a framework for action. It has 14 recommendations, some of them recognisably relating to the good work that Pat does. The recommendation relating to the process of dying though is this one. It is a commitment to:

“undertake a review of all current policies and procedures relating to care of the dying patient, and care of the deceased, to ensure that they reflect good quality care and to assess and reduce any real or potential negative impact of these processes on those who have been bereaved.”(Recommendation 3)

It suggests that there are important connections yet to be made in this area – in the Scottish NHS at least. Although, surely, it’s not hard to join the dots between the way that people feel when they are not involved in a death and the need to involve them more in the process of dying itself? It seems clear enough to me that if the humanity, care and understanding that Pat so clearly brings to her work after a death could be brought into the hospital itself and allowed to take their place at the bedside of the dying patent, then acceptance, understanding and the grieving process itself would be immeasurably improved.

But maybe the NHS in England is already there?

The Letting Go

First published in the New York Times by SIDDHARTHA MUKHERJEE

It had rained heavily the night before. The steep stone steps of the ghat are slick and slippery, and when my father pulls me onto the boat, the water feels more stable than the ground. The boatman rows out toward the open river, and the city of Varanasi swings into full view.

On the bank, wrestlers are performing calisthenics; a vendor is selling marigolds; a man is throwing birdseed at pigeons. The river moves sluggishly at first — but then a current forces the boat around the bend, and we are floating silently by the Manikarnika ghat, where the dead are burned.

I am 8 or 9 years old. Save a distant uncle who has died of renal failure, I have had no personal experience of death. I imagine it as little more than a corporeal exit from the world.

It is an unforgettable sight: row upon row of burning bodies on wooden pyres by the river’s edge. There are dozens of pyres lighted at the ghat, like lanterns along the river. Around them, a circus of death unfolds. There are sons waiting for a professional barber to shave their heads. Men carry the bodies down to the water.

The bodies, swathed in white cloth and strewn with flowers, are bathed, washed and then taken onto a bedlike pile of wood and set alight. The fires burn sometimes for hours. When the flames begin to sputter, the priest shovels the ashes, still smoldering, into the river. The melodrama of the scene is nearly perfectly offset by the glum, mechanical matter-of-factness of its participants. Mounds of ash and marigold and wood chips are floating all around the boat.

There is a man standing by one of the fires and facing the boat, with his arms still taut, as if holding the body — except he is holding air. I bury my face in my father’s lap, but curiosity, literally morbid, forces me to look and to look again, as we drift past. The scene on the bank is mesmerizing. Then the boat rounds another bend, the haunted tableau vanishes, and we debark at another ghat.

Decades later, having trained as an oncologist in Boston, I attend the funeral service of a woman who has died after a long battle with cancer. I remember approaching the coffin, and then registering something odd: the woman has been coiffed and dressed up, and there is the faintest blush of lipstick — lipstick? — on her mouth.

The eulogies at the service are moving and emotional. But the funeral itself seems cleansed and sanitized into a clinical, nearly forensic, ethereality. There are children in dark suits sitting on the aisles looking like miniature adults. I wonder if any of them will be haunted by this funeral, or dream often about it, as I did after that disorienting vision decades ago.

At medical rounds a few days later, I ask some residents and interns about death: how many have carried the body of a parent? What does the weight feel like? And what about the ritual of bathing and cleansing?

In the United States, most terminally ill men and women die in hospitals or nursing homes. The death is typically “pronounced” by an intern on call. The body is lifted out of its bed by an attendant and wheeled to a morgue by another shift worker in scrubs. Undertakers clean and dress it.

Before a cadre of professionals took over the job, people of many faiths took part in the care of the bodies of the dead. Early Christians typically prepared their dead for burial themselves. The novelist Catherine Madsen writes about the Tahara, a Judaic rite in which bathing the body in warm water is accompanied by the reading of ecstatic love poetry to the dead man or woman. If the ritual were revived today, Madsen predicted that “there would be nervous giggling about . . . necrophilia; the plan would be . . . declared inappropriate and quietly dropped.”

Indeed, when I recount Madsen’s description to the residents, it makes them nervous. Our experience of death has become disembodied. The corpus has vanished from the most corporeal of our rituals — and we are left standing with our hands outstretched and taut but with no counterweight to bear, like the man on the riverbank holding air.

Siddhartha Mukherjee is an assistant professor of medicine in the division of medical oncology at Columbia University. He is the author of “The Emperor of All Maladies: A Biography of Cancer.”

Hat-tip to Beth Knox of Crossings

Death in the community

 

Beyond the unappetising business of flogging pre-need plans to the tottering classes, undertakers do next to nothing to educate the public about funerals. They seek to be seen as public-spirited. They do good stunts, raise money for the hospice here, the air ambulance there. But how many stage events to raise awareness of the immense emotional and spiritual power of a funeral to transform grief?

Expectations of funerals are so low that most people are just relieved to get the whole horrible business behind them. They are so low that they bitterly resent the cost. So there have to be very sound commercial reasons for all undertakers to get out there and talk up their product.

Two recent events have brought death into the community in original and effective ways. Both were, for the apprehensive, welcoming in their informality; both set out to inform rather than sell.

The first was the Six Feet Under Convention held in Bournemouth on 12-14 August. It was a brave venture, which attracted 20 or so delegates to a series of talks by eminent funeralists and others. Alongside it was an open-air coffin display organised by the Natural Death Centre, complete with a coffin to paint and another to pose dead in. There were sporadic outbreaks of musical performance. It was reckoned to be the first-ever public display of coffins. So wary was Bournemouth Borough Council that it insisted on warning signs. It was notable that some foreign visitors were discombobulated. Brits loved it.

The second was ARKA’s Bringing Death to Life show in Lewes. An atmosphere of cheerful informality was inviting to the casual visitor, and a good number of people in the locality had made a very deliberate bee-line. They weren’t disappointed. There was an afternoon of excellent talks from Cara herself; from Julie Gill, who’ll be running the new ARKA branch in Lewes; from Hermione Elliott, a doula from Living Well Dying Well; and from Peter Murphy of Light on Life Ceremonies. Peter and his wife Belinda have a ceremony shop in Brighton, and work very closely with ARKA. How good to see a funeral director with an understanding of the vital importance of collaborating with ritualists. Cara certainly knows how to surround herself with brilliant people. A highlight of the day was hanging out with Jean Francis, author of the excellent Time to Go.

Timing your exit

Posted by Charles Cowling

Extracted from an article in yesterday’s New York Times: 

I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life”. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.” 

Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do. 

But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months. 

Years ago, people hoped that science could delay the onset of morbidity. We would live longer, healthier lives and then die quickly. This is not happening. Most of us will still suffer from chronic diseases for years near the end of life, and then die slowly. 

Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside. We are never coercively going to give up on the old and ailing. But it is hard to see us reducing health care inflation seriously unless people and their families are willing to do what Clendinen is doing — confront death and their obligations to the living. 

My only point today is that we think the budget mess is a squabble between partisans in Washington. But in large measure it’s about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon. 

Lessons applicable to the UK, obviously. Read the whole article in the NYT here. If you missed Dudley Cleninden’s piece, read it; it’s brilliant and important. Here

Home Death by Nell Dunn

Posted by Pippa Wilcox

I wish I could tell you that the real-life stories portrayed in Nell Dunn’s play Home Death are over-dramatised.  But they aren’t.  

It seems to be a terrifyingly random lottery out there in terms of whether or not you will stumble across the sort of care package which will result in a ‘good’ death at home – which is the aim of each of the characters we are introduced to in this beautiful, moving, unflinchingly honest 90-minute piece.  

Such a thing as a good death does exist and when someone dies, if they and the people who love them believe it to be as positive an experience as is possible in the circumstances, the difference it makes is profound.

A ‘bad’ death leaves a gnawing, corrosive legacy for those left behind.  A good death results in a sense of pride and — amongst the complexities of grief — a thankful absence of guilt, remorse and torment about the decisions made in the approach to those final breaths.

I know this from speaking with the 200 or so families I’ve worked with in my role as a humanist funeral celebrant.  I’m inspired by hearing about those endings which we would all wish for ourselves and the people we love; and I’m haunted by the ones you wouldn’t wish on your worst enemy.

In Home Death we hear of 7 deaths following cancer and we are spared no detail, no matter how uncomfortable.  We learn of the sense of loneliness and abandonment experienced by the friends and family of the dying; of the steel that appears to have replaced the heart of a doctor attending a dying man; of the desperately chaotic, disorganised and interminable scrabbling around for morphine; of the blood-spattered hospital ward; of the women who might be sent to sit with you in the night and whose only contribution to your well-being is to silently dispense medication and note in a book that they have done so; of the ridiculous insistence that you cannot die in your own home without a “horrible, scary, cold hospital bed.”

We learn that to organise a good death at home for someone we love often requires near-superhuman levels of determination, tenacity, time, energy, courage and an ability to rage against the machine.  And it would seem that above all else, access at the right time to morphine and anti-nausea medication is fundamental and all too often absent.  The NHS does not come off well in this piece.

Nell Dunn, now in her 70’s and renowned for giving a voice to ‘ordinary’ people in her work has assembled this play from her and her lover’s own experience and the experiences of others who had cared for a dying loved one at home. These true stories are told with commitment and integrity by the 11 strong acting ensemble.  There isn’t a weak link amongst them.  The production and performances are pared down, stripped back and utterly convincing.  

It is not wall-to-wall bleakness.  Although it is not so much the more positive stories that you leave the theatre dwelling on, there are some good deaths here as well as some air and light breathed into this piece.  The George and Diana Melly pairing and the trio of Mick, Lisa and Mary in particular provide some welcome laughter and the exchange between Juliet and James lets us off the hook for a while – the other five stories are told directly to the audience.

The Finborough seats might not be the most comfortable but this is one of those venues that makes me feel proud to be a Londoner.  The shamelessly intimate space, the courageous programming choices, the exceptional performing talent which it attracts, the hip and truly sweet theatre and bar staff, the very respectable loos, the (new) air-conditioning, the Firezza pizza which you can have waiting for you when the show’s over and the brilliant array of wines you can order by the glass… what’s not to like?

If you are a stakeholder in palliative care you must see this; if you believe that forewarned is forearmed you must see this. It’s hard to imagine a more effective means of highlighting the issues we all need to be aware of if we, or someone we love, would like to die well at home.

Home Death is currently playing at the Finborough Theatre for only 6 performances over 3 weeks.  Further performances may be added: http://www.finboroughtheatre.co.uk/productions/2011/production-home-death.php

Pippa Wilcox is a humanist celebrant who conducts funerals and memorial services for those who have chosen to live without religion:  http://www.humanistcelebrant.com

The Home Death Movement

 

I’ve been reading an interesting research report published last month in Australia. Its title: Bringing our Dying Home: Creating community at the end of life.

It examines how networks of unpaid carers can supplement the services of professional carers and enable dying people to die at home. It shows that the lot of unpaid carers need not be one of drudgery, anxiety and isolation, but an experience which enhances bonds in families, among friends and within the wider community. It asks this important question: What if the Home Death Movement (of which there is undoubtedly a global one), named itself as such and claimed a place at the decision-making table?

The report begins by stating how things are now: Most people die in institutionalised care – usually a hospital – resulting in the modern death becoming “cellular, private, curtained, individualised and obscured” This type of death can mean that people “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.” That most people do not experience dying and/or death in places of their choosing is an astonishing fact; a fact that, collectively, we are either ignorant of or just silent about. It is a fact that speaks to our failings as a society at a time of life that occurs for each and every one of us. [P7, refs omitted]

The report concludes: In the research reported here we found that people can and do care for their dying at home with the help of informal networks of community members. And they do it well. This is not to say that it is easy: it’s not. However, people overwhelming felt privileged and honoured to be involved in a caring network at EOL. Participants successfully mobilised and negotiated complex webs of relationships and engaged in acts of resistance to the Western, expert-based approach to EOL care. The knowledge and skills they developed as a result of the experiential, embodied learning about caring at EOL contributed to the development of social capital and community capacity for the people in this study. People’s relationships, on the whole, increased and intensified and these changes were maintained over time. [P8. EOL = end of life]

Importantly, the report adds that the professionals have a duty to support unpaid carers: In order to make sure that these networks are sustainable and that people who provide unpaid caring are not exploited and isolated, informal carers, and networks, need supporting. Carers need permission and practical hands-on help to gather caring networks together and to negotiate the type of help they need … We would also like to see organisations that provide paid care at EOL take on an active role in promoting death literacy and facilitating and supporting informal caring networks from a community development – or health promotion – perspective.

A Home Death Movement. Yes, we need one of those. This excellent report shows us that, far from being an anxiety-raddled ordeal, the experience of caring for our own as they lie dying offers rich rewards both to individuals and to society.

I am indebted to Hermione Elliott, director of LivingWell, DyingWell, who are, later this year, piloting a similar project in East Sussex, for sending me a pdf of the report, which I can’t upload because the filesize is too big. Email me and I’ll send you a copy: charles@goodfuneralguide.co.uk

Roundup

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

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

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

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

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

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

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

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

DeathRef Death Reference Desk

by GoodFunerals

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

StNeotsFunerals Andrew Hickson

by GoodFunerals

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

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

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

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

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

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

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

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

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

A time to die

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

He begins:

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

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

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

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

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