Category Archives: Good death

Die-alogue Cafe

Friday, 11 April 2014

Diealogue

 

First there was Death Café. Then Let’s Have Dinner and Talk About Death. Then Death Salon.

Now there’s Die-alogue Cafe

Die-alogue Café has been developed by an Australian academic, Stuart Carter. We’ve been talking to Stuart for some time. We like and respect him very much. His purpose is not to upstage other formats, but to offer an alternative.

His starting point is pretty much the same as the others:

Living in a death denying time in human history is not delivering the good deaths we say we would like to have … in the company of like-minded people: we don’t feel so alone, we can create a good death road-map.

Self-empowerment is the thing:

We choose to not sit around and wait for someone else to do what we can do, ourselves — when we have the know-how (knowledge), the where-with-all (tools) and the friends who are willing to lend a hand (help).

So the format is purposeful, the discussion focussed so as:

* to be of practical assistance to each other;
* to build a body of knowledge and expertise that will, by extension, strengthen our families and communities;
* to build bridges across cultural divides;
* to empower people to act wisely and face the future with a positive outlook;
* to raise awareness about injustices and
* to provide a gentle nudge of encouragement as we face our fears.

Die-alogue Café is not for children, people seeking grief therapy; or people who are not prepared to use the plain English words that describe our end-of-life realities. It is not everyone’s idea of a good way to spend a couple of hours.

Meetings are themed. They comprise ‘ordinary’ people and professionals – care home staff, nurses, doctors, undertakers, estate planners, etc. Outcomes may be various: Do research, take on projects, write letters, practice meditation, play games, create art, visit, invent; in other words practice the principles and report back.

The overriding purpose is to enable people to have better ends and better funerals:

While the location, the time, the group may be different the underlying sentiments remain… open, honest dialogue as a backdrop to creating a dance with death that when played out in daily life, will reveal treasures untold and enrich all who stumble across its stage.

You can find out more about Die-alogue Café here. You can find Stuart’s dedicated website and blog here.

Fight to the death

Friday, 12 April 2013


 
 
One of the things that’s changed is that ever so many people end up falling into the clutches of technology at the end of their lives. Something happens to them and the emergency response is to admit them to hospital – because the traditional view is that doctors are in a fight against death – that you have to ward off the evil death with everything you can.

But when death is coming, when it is inevitable, if you can actually help a person and a family to achieve a good death you’ve done a wonderful thing.

I think that there’s a lot of people who fear death. I don’t fear death at all, I just don’t. The idea for me of death is good, I can go to sleep. 

Dr Chris Abel, Islay

Watch it here.

Hat-tip: Mary Robson

Bad death, bad memory

Friday, 4 January 2013

hospital-bed

 

Pain that is not relieved in a person’s life continues after they are gone, held as a sordid memory by loved ones.  Just as we retain treasured thoughts of joy, wisdom and warmth, we preserve images of pain.  Unrequited suffering contaminates memory, preventing healing, healthy grieving and closure. This pain in turn flows across our communities, touching many who may never have met the patient.

A poorly managed end-of-life experience can transform families for generations.

Source

 

 

Time’s up, take yourself out

Monday, 16 July 2012

 

A theme that we like to explore on this blog is the way in which longevity has reconfigured the landscape of dying. The blessing of long life has its downside: protracted decline. We are likely to linger longer, much longer, than our forebears. There’s a physical cost in chronic illness and possibly, also, mental enfeeblement. There’s the emotional cost to the elderly and their families. And then there’s the financial cost, which the government has wrestled with and now kicked deftly into the long grass.

In the Sunday Times Minette Marrin wrestled with it, too. I’ll have to quote a lot of it because the ST website is paywalled. She suggests some interesting solutions:

Last Thursday the Office for Budget Responsibility (OBR) announced in a chilling report that the escalating costs of an ageing population will mean yet more national austerity. Pointing out that the proportion of people over 65, who now make up 17% of the population, will rise to 26% by 2061, it estimates many increased costs, in care of the elderly, health and pensions, amounting to an added £80 billion a year in today’s money.

In the next 20 years, the number of people over 70 is set to rise by 50%, reaching nearly 10m, according to the Office for National Statistics.

The OBR states that Britain’s public spending will be “clearly unsustainable” over the next 50 years, despite the spending cuts. So, far from care for the elderly rising above today’s inadequate standards, it is almost certain to fall further below them. There’s no money now and in future there’s going to be even less. 

Universal bus passes (which cost £1 billion a year), winter fuel allowances (£2 billion) and free television licences must go. 

Everyone must accept that their savings, including their homes, may have to be spent on paying for care in old age. There’s no universal right to leave one’s property to one’s children.

Taxes of all kinds must rise hugely, or else there will have to be a large hypothecated tax upon people reaching old age. Services to old people must be reduced … Health service care must be rationed for the very old. Palliative care of every kind should be available, but not ambitious treatments.

There should be fewer old people. I’ve often felt the best thing one can do for one’s children is to die before real infirmity sets in. The taboo against deliberately shuffling off this mortal coil, as people did in other cultures in the interests of younger people, is wrong. Most people say they never want to be a burden to others in old age; it would be good if more of us felt able to prove we mean it, by taking a timely and pleasant walk up the snowy mountain. Especially since there’s no money left. [Our bold]

Source

How to Talk End-of-Life Care with a Dying Patient – Atul Gawande

Thursday, 26 April 2012

 

Four questions a doctor needs to ask a person who is dying:

1.  Do you know your prognosis?

2.  What are your fears about what is to come?

3.  What are your goals? What would you like to do as time runs short? 

4. What tradeoffs are you willing to make? How much suffering are you prepared to go through for the sake of the possibility of added time? 

 

There were six of us in the house. Seconds ago there had been seven.

Monday, 23 January 2012

Fran and her Mum on her 70th

 

Fran Hall, a funeral industry practitioner of many years’ standing, much admired by the GFG, now works as a consultant. She is also the newly-appointed Chair of the Natural Death Centre. For years Fran successfully managed to balance detatchment and empathy in her professional life, so how did it feel when one of her own died? Here, she tell us. 

 

It’s a rum thing, this death business. You can familiarise yourself all you like with the subject, read every book, article or blog there is to read, immerse yourself in working daily alongside the dying or the dead, consider yourself an expert on the ‘D’ word, and then suddenly you find yourself wrong-footed, knocked sideways out of theory by a swipe from the cold bony finger of the grim reaper.

For years I have grown a reputation for knowing all about death. From humble beginnings as a (completely untrained) funeral arranger, through qualifying with a diploma in funeral directing and then veering slightly sideways to participate in the fast expanding world of natural burial as a marketing manager, I have explored many avenues, and gained some notoriety within the business at the same time. I have sat with stunned, weeping families, bathed cold stillborn babies, collected broken bodies from the roadside or train tracks, cut decaying corpses down from loft hatches with white faced police constables standing by, dressed little children in their pajamas or favourite outfits, coordinated plans for huge ceremonies that needed roads closed and police escorts, conducted hundreds of corteges, written and delivered numerous ceremonies, and been intimately involved every time with the people I served.

I considered myself pretty sorted when it came to dealing with the emotional stuff, checking in with how each contact was impacting on me and those around me, crying sometimes, but not often – you find a way of assimilating some of the worst things you see, and you support each other, because people outside the hidden world of undertaking just don’t get it. Nothing really got through the defence system I created, not enough to impact on me. I was on top of it, cool with mortality, and therefore cool with the fact that at some point it would be my body on the tray in the fridge, or the body of someone that I loved…

And currently, the body of my mother is lying in a fridge somewhere within Kings College Hospital. She’s been there almost exactly a year. She died on January 23rd 2011, and what remains of her will probably be cremated sometime in 2014 in some godforsaken crematorium in South London. Her decision to leave her body to medical science was something we all applauded when she produced the paperwork back in 1999, such a thoughtful, generous thing to do. I had no idea of the actual effect it would have when the time came and we were left without the comfort of a ritualised farewell to her existence. That’s what I mean about being wrong-footed. 

Let me go back. It was a mercifully brief illness that snuffed out the bright light that was our mother. Always the centre of attention, glamorous, bossy, difficult and charming, she was a true Leo, a powerfully dominant matriarch at the heart of our family. The drama of being the hostess of a Grade IV glioblastoma multiforme – the most deadly of brain tumours – was only fitting for someone who shone so brightly and who numbered her friends in the hundreds. She was fit and healthy in the August, and dead four months later – sixteen weeks exactly from diagnosis. In those sixteen weeks I realised that all my years of being alongside death had been just that, a journey beside others, a second hand experience. My practical knowledge was useful – I knew how to talk to the professionals, what questions to ask, how to get the help we needed, I was able to do stuff that my brothers couldn’t, because I knew my way round the system. Emotionally it was easier for me too, I had learned how to deal with grief over the years, knew what to expect – and yet being immersed in the swirl of feelings that ebbed and flowed during those four months was something quite new.

 

Walking on Epsom Downs on the last all-family day out

 

We were incredibly fortunate, the planets had aligned themselves in such a way that we were able to give our mother the best gift, a death at home in the house where she had lived for fifty years. Not that she discussed it at all – she never once spoke about death, she refused to be drawn into any conversation about her deteriorating health, somehow complying with hospital appointments, radiotherapy sessions and visits from the Macmillan Nurses without ever acknowledging the unspoken fact that everyone knew. Out of earshot my brothers and I had long conversations, each of us at different stages of acceptance of the inevitable, but in her presence we took our cue from her and kept conversation light and easy.

The cruel indignities of a failing body are very basic, very simple things that signpost the shortening path ahead. Gradually, gradually the world closed in – in October we walked as a big family group on the Downs, by November she could no longer walk up the stairs, by December she couldn’t raise herself from a chair. The hospital bed and commode arrived, furniture was shifted and a boudoir created in part of the living room, complete with ambient lighting, feather boas and beads, candles and flowers, and drapery over the mirror so she didn’t catch sight of her features bloated by drugs. Pleasures became little and intimate – no more grand dinners or shopping for bright coloured clothes, she was happy to have her nails painted and perfume applied and to gaze for hours out of the window. We didn’t know what she was thinking, but she seemed content with her thoughts, whatever they were. And while she passed each day quietly and comfortably, we three journeyed with her towards the end, each of us in the experience, part of it, not just observing it.

We were blessed with the kindest of carers to help us in the last few weeks, wonderful ladies who arrived every few hours with gentle hands and loving hearts. They bathed her and changed her, spoke softly and cheerfully to her, marvelled at her grace and serenity and shared jokes with us while they wrote their notes before slipping away. We were able to just be with her, offering food and drink, sitting with her while she slept, changing places with the various friends and family members who came every day to see her. It was a wonderful, dreadful time, a time in which we were able to contemplate what was coming and reach a kind of acceptance, safe in the familiar surroundings of the house we had all grown up in. I know how lucky we were, so many other families aren’t able to have such a softened approach to a death.

 

 

The day before she died all of her grandchildren were together in the room – separated from the bed where she lay semi-conscious by a DIY partition, nine of them sprawled on sofas and chairs, playing cards, eating pizza, fooling about quietly to the accompaniment of ‘Nan’s music’. Probably the last sound that she heard was their laughter – it was surreal, and yet so right to have them all being normal just feet away from their dying grandmother. Each of them came and went as they wanted to her bedside, holding her hand, stroking her hair. When the older ones left that night, they all knew they wouldn’t see her again and this was one of the hardest things, seeing my children leave the house stumbling with grief and tears and holding each other tightly. The little ones wanted to stay, so we made beds for them on the floor, and they slept as we adults sat vigil with our mother as she died.

You don’t get much preparation for what to do once someone has died. I don’t mean the immediate practical stuff, like closing their eyes, laying them back onto the pillow, wiping their mouth; I mean you don’t really know what to do with yourself. She had left us irrevocably, gone. Completely gone. There were six of us in the house, my brothers and sisters in law, my mother’s dearest friend and me. Seconds ago there had been seven. It was the opposite of being in a delivery suite when a baby enters the world. Bizarre thoughts like that arise unbidden as you experience the profundity of what has occurred. Someone made tea, someone else went off upstairs to be alone, my nephews were gently woken and told, as we had promised them we would, and the adults then had to look after them and try and assuage their grief – a welcome distraction I think.  After an hour or so I went out and walked in the freezing January night to an ancient oak tree a mile or so away and just sat at the foot of the huge trunk and looked at the stars, without thinking. It was beyond thoughts, that night. And beyond feelings too – it was just elemental and unconstructed and without boundary, it was death.

In the morning my sister in law and I laid my mother’s body out, washing her and dressing her and making her look lovely again after the ravages of the night before. We hadn’t rushed to call a doctor to certify the death, and we didn’t rush to call a funeral director either, choosing to keep her body at home all day to allow other family members and friends to come and be with her. This was in direct disobedience of the ‘donation to medical science’ rules, but we judged it cold enough to take the risk, and fortunately for us we got away with it (I wouldn’t recommend it to others though if they needed to ensure the donation is accepted, I had to be somewhat economical with the truth on the phone the following morning!)

 

 

Eventually, on the Monday afternoon, an undertaker friend of mine came and collected mum’s body and drove her off to her new role as a cadaver for medical students to practice their skills on. This was yet more uncharted territory, and something that I found really difficult to accommodate. I felt denied the opportunity to ‘lay her to rest’, and really struggled to get my head round the absence of a funeral. After all, that was what I did, I made funerals happen – and I wasn’t to be allowed to for my own mother – that was a real tough one for me. I ended up by substituting a funeral with what was to become the most extraordinary memorial service for her a couple of months later.

It’s been a strange journey, this one from ‘knowledge’ through experiencing to where I am now. Probably the best summary is that I am older and a little wiser – an orphan has more insight than a funeral expert. I’m still buying books on death and learning all the time from others, but the process of being alongside my dying mother has taught me more than anything.

 

Today is the anniversary of Fran’s Mum’s death.

Contact Fran at franhall [at]sky [dot] com

 

 

Home Death by Nell Dunn

Wednesday, 13 July 2011

 

 

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

Can you help?

Thursday, 30 June 2011

By Caroline Iandoli

Living funerals are gathering in popularity as more people are approaching death with a more positive frame of mind, taking the opportunity to celebrate with the people they love and have been important in their lives. It also means friends and relatives who might not be able to attend the funeral at short notice can say goodbye. This kind of celebration often has a positive effect for those coming to terms with illness and loss.

We aim to reflect this shift in attitudes by making a documentary celebrating life through the lens of the deceased apparent. The film will confront the traditional way of dealing with death, and demonstrate that planning for the end of your life doesn’t have to be morbid. It can be – and for many people is – positive and uplifting.

We are looking for people who are thinking of planning a life celebration to contribute to the film. For more information please contact Paisley Randell: 07554009286 or email us at forgetmenotfilms@mail.com

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