Politics and funerals

A topical post from our religious correspondent, Richard Rawlinson

Timed to counter the low turnout of voters at the mayoral and local council elections last week, did you catch the BBC advertisement challenging political apathy by chronicling how so many everyday activities–from the fat count in our sausages to the safety of cyclists on the road–are politicised?

Despite the mid-term anti-Government vote that brought some good news for Labour and disappointment for the Tories, and especially the Lib-Dems, Londoners of my acquaintance are relieved to see Boris returned, and the defeat of tax-avoiding, gaff-prone has-been Red Ken.

But how does politics–local and national–impact on the funeral business? Healthcare clearly affects death tolls, and the economy the lot of small businesses such as independent undertakers. Here are five more, big and small, issues with which local councillors might perhaps busy themselves:

How shall we avoid traffic disruption by town centre funeral processions?

Can we empower the police to hose down those awful ‘God Hate Fags’ protesters who upset the bereaved at private funerals?

How can we secure more land for cemeteries?

How can we placate believers in man-made global warming by making cremation more eco-friendly?

How can we tackle the class war issue of inheritance tax and death duties?

Please add some meat to the bone of this shamefully skeletal list.   

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

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? 

ADRTs — who does and who doesn’t

From a letter in the New York Times:

Older adults who do not formally convey their treatment preferences to loved ones create a distressing situation in which children and spouses must make emotionally draining (and costly) decisions about whether to continue or stop life-extending treatment.

As Ms. Jacoby points out, one obstacle to planning is a reluctance to discuss and confront one’s own demise. Yet my research, based on interviews with more than 7,500 Americans, points to another important obstacle: money. Many people complete their advance directives as part of their estate planning; the living will is written up along with one’s will and other documents to protect one’s assets.

But many people with few financial assets to protect do not take the important first step that often kicks off the advance care planning process. People in the lowest quartile of assets are only half as likely as those at the top of the assets ladder to have a living will, to appoint a health care proxy or to discuss their treatment preferences with loved ones.

Source.

Three ways of talking to the dying

Virginia L Seno of the Esse Institute here proposes three ways of addressing a person who is dying. Here they are in stark outline:

  1.  Ask the question,“What is most important to you right now?”
  2. Do what needs doing
  3. Be quiet and open-minded. Be present. Be available. Be willing to ask and hear and do.
Read the whole article here

Is Fear Killing Compassion for Older People?

Posted by Jon Underwood, founder of the Death Café project

“In this case, ignorance is not bliss. With death, ignorance is fear.”

Caitlin Doughty – The Order of the Good Death

The UK Commission on Improving Dignity in Care chose the 29th of February to drop their bombshell in the form of a draft report on how to improve care for the elderly. Their recommendations were dry and sensible but the Commission used their moment in the spotlight to prod at a shadowy part of our national psyche. When splashed across the media nuance was lost to the big message – we’re not compassionate enough, we need to care more. Their implication was clearly that we don’t care enough. 

Though it was NHS staff that were labelled as lacking compassion there were a lot of us who felt, deep down, that we might not care enough too. If we did how would we allow incidents like those that set this Commission in motion continue to occur. Some of these were documented by the Health Ombudsman in a migraine inducing report, the kind that you have to steel yourself to open.

And when you do you learn of Mr. D whose family arrived at hospital on the day he was due to be go home and found he had been waiting for several hours. He was in pain, desperately needed the loo and couldn’t ask for help because,  he was so dehydrated. His daughter said that ‘his tongue was like a piece of dried leather’. The emergency button had been placed beyond his reach, his drip had been removed and the bag of fluid had fallen and had leaked all over the floor making his feet wet. When the family asked for help to put Mr D on the commode they reported that he had ‘squealed like a piglet’ with pain. Truly a  horrific experience for any family.  His daughter said that ‘From the moment cancer was diagnosed my dad was completely ignored. It was as if he didn’t exist – he was an old man and was dying.’

The report continues in a totally dreadful way. You read about Mrs. H who was transferred from hospital to a care home. When she arrived the Manager found she had numerous injuries, was soaked with urine and was dressed in clothing that did not belong to her and which was held up with large paper clips. Or you read about how staff at Ealing Hospital left Mr. J forgotten in a waiting room, waiting to be told he could come in now,  while his wife died in the ward nearby. Or about how staff at Oxford Radcliffe Hospital turned off Mr C’s life support despite his family’s request that they wait until they got there. 

Can you imagine equivalently painful situations would be allowed to occur and reoccur if they concerned children rather than older people? Its convenient to blame medical staff but there is evidence of a much more pervasive problem. According to the European Social Survey Britain has one of the worst records in Europe on age discrimination. Age UK, our loudest voice on behalf of older people, says “Undignified care of older people does not happen in a vacuum; it is rooted in the discrimination and neglect evident towards older people in British society. Age discrimination is the most common form of discrimination in the UK.” 

Abuse and neglect is a crime. Horrible incidents like the ones described above are much more likely to happen to older people. These things together, I firmly believe, constitute hate crime. In the face of them it’s hard not to feel we have some questions to answer, like why these things happen and what can we do about it.

The explosive reaction following the publication of the Dignity in Care commission report was unsurprising because they almost dared to point the finger of blame at the general public. The tone of this debate is shrill and pervaded with unease. Commentators seem happy to skip the bit about what the problem actually is and focus on what should be done about it, and about this there is almost a complete lack of clarity and agreement. 

Some suggest banning the use of the word ‘dear’ to describe older people. Many say that nurses pay and conditions do not allow them mental space to be compassionate and when they are improved standards will improve too. Others suggest that NHS privatisation will only make things worse (a view one suspects they had before the report was published). Esther Rantzen is proposing Silverline, a 24-hour phone service where older people or their families can blow the whistle on cruelty or neglect. Virtually no one suggests that the Commission’s own mild and unthrilling recommendations will amount to much more than a cursory step in the right direction.

The most entertaining commentary I’ve seen was a teeth-grindingly awful piece by Allison Pearson in the Telegraph called ‘Listen darling you can’t legislate for compassion.’  Pearson thinks that “Caring is a vocation, empathy a gift”, conveniently letting herself off from ever having to develop any compassion herself. She continues “Hospitals used to know as much, back when girls with big hearts and a small clutch of CSEs were recruited to do what they did instinctively: fetch a flannel and basin to give someone a nice wash, stroke a shaking, ancient hand, share a joke over a bedpan.” Ah! The harking for the mythical past! So comforting to invoke because it didn’t exist so there is no chance of us ever getting back to it. 

Pearson is wrong on so many levels but the idea that things were better then is just bollocks. This is because the issue here isn’t about reintroducing matron or even about older people. It’s about death. The people profiled by the Health Omdudman were dying. 9 out of 10 of them didn’t live to see the report get published. Things can often go to shit when people are dying and this is where so many problems lie. Key fact: 54% of the complaints that the Healthcare Commission receives are ‘bereavement related’.

It makes sense because many of us don’t do dying very well. We don’t even like to talk about it. And when we see people who are dying we can freak out, a bit or a lot, and sometimes not do the best things. It doesn’t take anything else to cause incidents like Mr. D’s. 

So the flipside of this, is that someone who is more OK about death (and all that is all associated with it) should be better at looking after a dying person than someone that who is scared. This makes sense and there is a surprising amount of evidence of this point. Its not just nurses that are afraid of death – count me in and probably you too – but they are the ones who’ve mainly been studied as far as I can tell. G. G. Eakes studied the relationship between death anxiety and attitudes towards the elderly amongst 159 nursing staff.  The conclusion was clear: “Nursing staff with high levels of death anxiety had significantly more negative attitudes toward the elderly than nursing staff with low levels.” Vickio and Cavanaugh found that the results of their study of 133 nurses “indicate that a connection between old age and death may underlie the relationship between death anxiety and attitudes toward elderly adults.” DePaola, Neimeyer, Lupfer and Fiedler’s comparison of 145 nurses with a control group found similarly that “increasing levels of death concern were associated with greater anxiety toward ageing, especially in the nursing home sample, and nursing personnel displayed significantly fewer positive attitudes toward the elderly than did controls.”

If our problem is fear of death then what should we do about it? The good news is that in many areas we’ve never been better at it  – another reason that Allison Pearson from the Telegraph is wrong to yearn for the good old days of matron. For example, the modern Hospice movement is a magnificent British gift to the world through the pioneering work of Dame Cicely Saunders. It is noteworthy that the word ‘hospice’ is completely absent from the Health Ombudman’s report. Britain is also a world leader in natural burial thanks in large part to two decades of effort by the Natural Death Centre. There is always compelling off-centre debate on this blog. The GFG has the courage to fire sharp barbs at the big funeral chains and is clever enough to lead on big tasks like redefining ritual for non-religious funerals. There are many fantastic undertakers and celebrants and lots of great stuff is happening, like my personal project Death Café and the brilliant Order of the Good Death

Saying that this is a debate about how we care for the elderly makes nurses, care homes and hospitals the things we need to change. No one would deny that changes to date haven’t been entirely successful. Saying this is a debate about how we die would bring the focus back to where it needs to be – on the dying person and their family with nurses, care homes and hospitals there to provide compassionate support.

[Death Café works with anyone who wants to talk about death. This includes those who are dying, those that support them and everyone else. Please do get in touch if you’re minded to.] 

My Southbank Deathfest

Posted by Vale

Some personal reflections on the Southbank Deathfest this weekend:

Imagine a wire and steel footbridge over the Thames: brown water lapping, St Paul’s, pale in the wintry light, downstream. Drop down to buildings, a collection of concrete and glass halls that were modern once but which, in the way of those brave 50s buildings, now feel curiously dated.

Inside, people. Lots of them. It’s like an arty concourse in a railway station. Not everyone has come for the Deathfest – though hundreds of them have – but it seems that the lobbies of the Royal Festival Hall are a gathering place for Londoners anyway. The mill of people – talking, drinking coffee, mooching about, characterises the whole of the Deathfest. The day is made up of different events – talks, Death Cafe’s, discussions, stalls, happenings. Each of them has a charge of energy – and, depending on the venue and what’s going on, this mill of people round about sometimes makes them seem open and dynamic and, sometimes, dissipates them so that it is impossible to concentrate.
Actually there was a general sense of mild chaos everywhere. 

Decorative coffins from Ghana

Through the door and, whoop! there are old friends and GFG regulars – Sweetpea, Belinda Forbes, Charles (whose phone rings constantly so that he is no sooner there than darting off again) and Gloria Mundi.There seemed to be friends of the GFG everywhere. Our religious correspondent Richard Rawlinson, Ru Callender, Fran Hall and Rosie Inman-Cooke at a very lively NDC stand, Tony Piper and then GFG heroes like Simon Smith from Green Fuse, Shaun Powell from the Quaker initiative in the East End, helping poorer families to a good funeral. James Showers, Kathryn Edwards too. Who have I missed out? Who did I miss?

If I am honest there was a lot that was interesting, some that was moving and a little that I thought was not really for me as a practicing Celebrant. But it wasn’t aimed at the likes of us and it was hugely exciting that so many there had come for themselves, to find out and start their own explorations. At the sessions I took part in – where the question was asked – I think 80%-90% were ‘ordinary’ people.

I enjoyed an NDC hosted talk about the need to prepare for death. It made me realise that, as a celebrant, almost all of our time is spent with families after the event. Wouldn’t it be wonderful to meet people earlier? I came away with a resolution to start to make a video recording as part of my own end of life preparations. Just, you know, to make sure a few good things get said. Met an inspiring spiritual midwife too!

After, off to the Beyond Goodbye session that began with Charles’ talk and closed with the film and questions about Josh’s extraordinary funeral. Well, extraordinary because of the film and the standard and quality of what was done, but, I wanted to call out, there are lots of ‘extraordinary’ funerals now. Any family can – should – have one. But that hardly needs saying here. Josh’s mum and brother though came across as pure gold. It really is worth watching it – find the GFGs original posting here. The website for Josh and for Beyond Goodbye is here.

I hung on to my seat (this was in the smaller Queen Elizabeth Hall) because after Josh came John Snow and the assisted dying discussion and lot’s of people wanted to see that.

At the end of a lively discussion I’m with Helena Kennedy on this: let’s, for goodness sake, have a proper commission about end of life issues. We’re mired in piffling debates in the Leveson enquiry and the doubtful (but surely unsurprising) morals of newspapers when there is an issue here that is both urgent and important and where popular feeling is pulling ahead of the current legal position. Society as a whole would benefit from open, reasoned, public enquiry and debate. I feel a GFG campaign coming on…

There were lots of things in the discussion that did make me think – especially the realisation that assisted dying has to be considered in the whole context of how we, as a society, treat vulnerable people. The whole debate would change – wouldn’t it? – if we could be confident that we treated the elderly and disabled generously, with respect and true consideration?

So much that I didn’t see. Paul Gambaccini’s session on Friday about Desert Island Death Discs, the poetry, Paul Morley and Sandi Toksvig – but I still came away with a sense that, maybe, in places like the pages of this blog, in the work of pioneers like the NDC and the Quaker Social Action project, and most of all in the energy and interest of the people who came and took part, we really might be able to bring death our lives. One thing is certain – we need more festivals like this one.

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

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

Going the wrong way

Roughly a third of family members of I.C.U. patients show symptoms of post-traumatic stress, according to research by the French intensive-care expert Elie Azoulay and his collaborators. If a loved one dies in intensive care after discussions about advance directives and patient wishes — that is, after the family has been made fully aware of the finality of the situation — the psychological fallout is even greater, approaching 80 percent. We do not always aid the living by inflicting high-tech ministrations on the almost-dead.

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