Category Archives: End-of-life issues

“It’ll save you the bother when I’m dead.”

Sunday, 15 June 2014

Jeremy_clarkson_april_2013_five

 

Jeremy Clarkson, writing in the Sunday Times about the death of his Mum:

Right in the middle of all that brouhaha about sloping bridges and Eeny, Meeny, Miny, Moe, my mum died.

So there I was, in Russia, in the middle of a Top Gear tour, trying to organise her funeral and tell the children and sort out all the legal stuff … and I knew that if I wept, which is what I wanted to do, because I was very close to my mother, the Daily Mirror would run pictures and claim they were tears of shame. It was a gruesome time.

And I knew that when I came home the BBC would still be bleating and the reporters would still be calling, and I’d have to go to her house and start sorting through her things. And where do you start with a job like that? Where did she keep her pension details, the deeds to her house, her insurance certificates? How do you cancel a Sky subscription? Did she have any shares? Premium bonds? And how do you find out if you haven’t got a sister who’s a lawyer?

Luckily, I do have a sister who’s a lawyer, but even though she could handle the paperwork, I’d still have to go through my mum’s things, and that would be a nightmare because I’m such a sentimental old sausage I even find it difficult to throw away an empty packet of fags. I think of the fun I’ve had smoking them and the people I’ve shared them with and I want to hold on to the wrapping as a keepsake, a reminder of happy times.

So what in God’s name would it be like in my mum’s house, surrounded by everything that made it hers, except her? And there’d be all those childhood memories. At some point it would be inevitable I’d find the egg cup I’d used every morning as a child and the cereal bowl with rabbits on it. That would tear my heart out.

At one stage I received a call from a middle-ranking BBC wallah saying they’d had a letter from some MPs, asking if I was going to be sacked, and I really wasn’t paying much attention because I was wondering what on earth I’d do with the mildly fire-damaged Dralon chair that my dad had bought for £4 in 1972.

Even by the standards of the time it was a truly hideous piece of furniture, and the years had not been kind to it. Any normal person would give it to charity or use it as firewood. But it was the chair my dad used to sit in. It had a cigarette burn in the arm from the time when he’d nodded off while smoking. I couldn’t possibly give it away, or burn it. And I sure as hell didn’t want it in my house. So what would I do?

There is no single thing in the house of anyone’s mother that isn’t infused with a gut-wrenching air of sentimentality. It’s not just her jewellery or her clothes. It’s the little things as well. Her kitchen scissors, her bathroom scales, her flannel. Every single thing in each and every drawer is as impossible to discard as a first teddy bear.

I would need a very big lorry to handle all the stuff I’d need to bring home. I’d also need at least two months to go through it all. And I’d need about 4,000 boxes of Kleenex.

However, here’s the thing. My mum did not die unexpectedly. She’d known for some time that the cancer was winning and had therefore had time to put her affairs in order. A job she had undertaken with some gusto.

I’d always assumed that “putting your affairs in order” meant writing a will and remembering to reclaim your lawnmower from the chap at No 42. But in the weeks since my mum’s death I’ve learnt that actually there’s a lot more to it than that.

First of all, she had left many helpful instructions about what sort of funeral she wanted. No friends. No flowers. And no mention of God or the baby Jesus. My sister and I didn’t even have to guess what music she would have liked because she’d told us: Thank You for the Music, by Abba.

All the financial stuff was in a neat box with everything clearly labelled. And she hadn’t stopped there. Before she became too weak, she’d had a massive clear-out. Pretty much everything she owned had been thrown into a skip. “It’ll save you the bother when I’m dead,” she had said.

But by far and away the best thing she did in those last few months was to sort out a lifetime of photographs, putting the ones that mattered into albums and, crucially, writing captions. So now I know that the time-faded sepia image of a stern-looking woman in a nasty hat is my great-aunt and that the blurred picture of what might be a corgi was my grandad’s dog.

Ordinarily, I’d have thrown away the endless pictures of what appear to be a building site, but thanks to my mum’s diligence, I now know it was the house in which I was born. And how it had looked when she and my dad bought it in 1957.

I don’t know how long she had worked on her downsizing and the clear-out and the organisation of her things, but it’s something we should all try to do when we know the Grim Reaper is heading our way. Because not only does it spare our loved ones from the hassle of going through every single thing we’ve ever owned but also it spares them from the grief of deciding that the horse brasses and the Lladro figurines really do have to go to the tip.

The only trouble is that there’s one thing my mum did not sort out. Back in 1971 she made my sister and me two Paddington Bears. They were the start of what became a very successful business and they were very precious, but over the years one was lost.

I maintain the sole survivor is mine. My sister insists it’s hers. And she’s the lawyer . . . so I have the cereal bowl with the rabbits on it, and the Dralon chair.

 

Imagine this: when someone dies we don’t hand them over to strangers

Wednesday, 11 June 2014

 

 

When the GFG, in conjunction with the Plunkett Foundation, announced a community funerals initiative back in 2012, we supposed that someone might pick it up and run with it. The Plunkett Foundation, far cleverer than us, was pretty confident they would.  They contacted all their community shops and community pubs and we waited with bated breath to see what happened next.

Absolutely nothing. Zilch. Squat.

So we are really pleased to learn of the emergence of a community funerals initiative on the other side of the world – in SE Australia in the steel town of Port Kembla, a place where, according to its community enterprise website, “no one wanted to live” until recently, but “now there is a change in the atmosphere”. It does look a bit like one of those unprepossessing places that brings out the best in people.

The purpose of the Port Kembla community funerals enterprise is to “empower people around death and dying, and offer a not for profit funeral service that is affordable and highly personalised to support healthy bereavement.” It is called Tender Funerals.

Tender Funerals will “offer affordable and flexible services and a transparent fee structure, to minimise the financial impact of funeral care. It will counter the idea that the amount of money spent on a funeral is a reflection of the amount a person was loved.”

“Tender Funerals will offer personalised services that demystify death and dying, and involve a model of community support, to assist healthy bereavement. This will include unique offerings of information and support, funeral services that celebrate and acknowledge both a person’s death and their life, and support and facilitation of active participation and community support in funeral care.”

They will also create an education programme to teach people about issues around death and dying: “We will develop and implement a community development model to provide ongoing support and community awareness … By providing a more open approach to death and the process around caring for the dead it is envisaged that people will become for familiar with death as an inevitable part of life.”

“Tender Funerals is re–imagining the way in which we as a community deal with death and provide a context within which the community is informed and empowered to ensure that the end of life process is one which is meaningful, authentic and good value.

“It will be a community resource and a funeral care provider that responds to shifts in community needs, attitudes, ideas and experiences in relation to death and dying.

“It will also develop a model for not-for profit funeral care that supports healthy bereavement, and empowered decision making at end of life, which can be replicated in other communities.”

The Port Kembla Community Project already has a scheme which offers no-interest loans up to $1,000.

Tender Funerals is presently crowdfunding to raise the money it needs to get off the ground. Check out the vision statement.

Its originators have had a film made about them – you can see the trailer at the top of the page.

Here at the GFG we’ve sent them a few bob to help them on their way. And we wish them every possible success.

Why go there?

Monday, 12 May 2014

Banner-720x320

 

“If we want the deaths our lives deserve, we need to start talking about it,” advises a Times leader today.

Yes, it’s Dying Matters Awareness week and all Funeralworld is a-flutter with wheezes to “start the conversation” and encourage people to make a will, jot down their end-of-life wishes and their funeral wishes, even sort out their digital legacy.

As ever, the narrative from Dying Matters is that “discussing dying and making end of life plans remain a taboo for many people.” A possible problem here is that the stats supporting this statement offer comfort to the ‘deniers’ by showing them they are with the majority. Most people, after all, want to be where everybody else is.

And, by gum, the deniers constitute a big majority: 83% of people say they are uncomfortable discussing dying and death. 51% say they are unaware of their partner’s end of life wishes. 63% haven’t written a will. 64% haven’t registered as an organ donor or got a donor card. 71% of people haven’t let someone know their funeral wishes. 94% haven’t written down their wishes or preferences about their future care, should they be unable to make decisions for themselves.

If you reckon it important for people to get their death admin sorted, the present state of affairs is dire. But Dying Matters reckons that 400,000 more people aged 5-75 are talking about this unappetising stuff now than 5 years ago. This, surely, ought to be the headline figure. No one wants to feel left behind.

The difficulty in chivvying people to ‘get their shit together’ is, of course, that it brings them face to face with the terrifying fact of their own extinction:

A week? or twenty years remain
And then–what kind of death?
A losing fight with frightful pain
Or a gasping fight for breath?

There’s this comfy consensus among people in the death business that if you can bring yourself to confront your fear of dying your fears will magically melt away and your life will be gloriously enriched. It ain’t necessarily so. On the contrary, thinking about death can magnify the terror – why wouldn’t it?

For the end is likely to be disagreeable. Sherwin Nuland, in his book How We Die, wrote: “I have not seen much dignity in the process by which we die. The quest to achieve true dignity fails when our bodies fail.”

Nuland wrote his book 20 years before his death in March this year. Did the contemplation of his own mortality induce equable acceptance? Here’s an extract from his obit in The Times:

It is not given to many of us to set the stage for our own demise. For the surgeon and medical ethicist Sherwin Nuland, author of the bestselling How We Die: Reflections on Life’s Final Chapter, the climax of his personal drama, with the audience watching intently and the curtain poised to fall, had been scripted years before and never needed revision. Yet when the time came, Nuland was reluctant to play the part, remaining in the wings, unsure of his lines, not ready to make his last entrance.

According to his daughter Amelia, he talked incessantly about what was happening to him. “I’m not scared of dying,” he told her, “but I’ve built such a beautiful life and I’m not ready to leave it.” Finally, as the end drew near, he seemed “scared and sad”, as if the morbidity of his lifelong preoccupation had, somewhat ironically, rendered him unable to confront the reality.

If only talking about it really did earn us “the deaths our lives deserve” and, in the words of Mayur Lakhani, chair of the Dying Matters Coalition,  “enable people to become more comfortable in discussing dying, death and bereavement.”

But if not talk, what else is there?

 

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.

Time to make way

Thursday, 27 February 2014

Pills

 

A letter in last Thursday’s Times tells us something, perhaps, about the evolution of society’s thinking about dying, death, the competition for NHS resources, futile care and the declining value life holds for the ageing and the elderly both in the eyes of society and in their own eyes:

Sir, It makes sense to limit some expensive drug treatments to the people who can best benefit society as well as improving the quality of life for the patient. I am an old person (73) and an ex-nurse and I do not understand why so many oldies are obsessed with getting every treatment available, to prolong their lives.

My mental and physical health are deteriorating. This is a fact of life, not a complaint. If I should become ill I will gladly forgo any expensive cure to allow someone younger than me to improve their opportunity of a better quality of life, and the chance of being more use to society. I ask only for palliative care and the chance of a quick release from life when I feel ready to go. I am not alone in this attitude.

The fact is that many old people are a burden on society. Like all nurses I have cared for the elderly as well as I could, but there were many occasions when I wondered why we were doing it. People who cannot accept this argument should work for a few months in a care home where many patients are demented, incontinent, unable to care for themselves, and have no visitors.

Like many of my friends I have made a living will to express my wishes in the event of acute illness. I would like to be able to apply for a prescription which could be used if I ever feel like a quiet and peaceful exit before things get too bad.

Gill Pharaoh — Pinner, Middx

Matthew Parris made this contribution to the debate:

I’m 65 this year and I wouldn’t dream of expecting the taxpayer to divert scarce funds my way for expensive drugs that would do more good for a teenager. My conscience even troubled me over the cost to the NHS of an operation last December to stop my right hand clawing up, as I can manage perfectly well without a couple of fingers.

My late father (a retired electrical power engineer) told me after the Chernobyl disaster that they should use oldies like him to go in and secure the generators. He was serious. I never admired him more.

Feasting on brains

Monday, 1 July 2013

P1010963

 

Beau Nash obelisk, Bath

Weekends? Ha! We don’t believe in them here at the GFG-Batesville Shard. Probably you don’t, either. Because, like you, I know that the number one regret of the dying is: I wish I had worked harder.

So on Sunday, noticing my bank manager had nodded off in a deckchair, I slipped my fiscal leash and zipped down to Bath for the second day of the annual CDAS conference: New Economies of Death: The Commodification of Dying, the Dead Body, and Bereavement. Snappy title. Forty-five quid, lunch thrown in. Thank you for letting me in at the last minute, Caron!

I’d obviously missed lots of good stuff the day before, because everyone was keen to rub it in. Not to worry, there was lots of good stuff on Sunday, too, much of it from hands-on people like Barbara Chalmers, and Shaun Powell and Lawrence Kilshaw. There were good papers on funeral costs and much talk of funeral poverty. A highlight was a very bright Australian undertaker, Anne Gleeson, who talked about the importance of joining up end-of-life care to the care of the dead body. She and her husband specialise in ‘individualised funerals on farms and wineries, traditional church services, small personal ceremonies in homes and community venues’. This very bespoke way of working doesn’t necessarily endear them to their fellow undertakers, better termed funeral directors. Yes, there’s a difference.

For me, the best bit was the session after lunch. Steve Gallagher, from the Chinese University, Hong Kong, lectures in law and specialises in trusts — an area of law, he told us, reckoned by lawyers themselves to be the most boring of all. He loves it, and managed to communicate that. He told us about Chinese customary trusts in the New Territories, and how they were adopted into the common law of Hong Kong by the British. The main purposes of these trusts are threefold: ancestral veneration; the provision of funeral costs for clan members; and the maintenance of clan graves. The richer trusts cover other expenses of clan members, too – education, for example. They are unique to China and incorporated into law only in Hong Kong. 

What an excellent model, I thought, for British funeral planning. I put it to Steve and he agreed that it would work. He named the English trust that would best suit (I wish I’d written it down). It needs to be renewed every 21 years, giving a family the opportunity to review and remodel. All good.

He reminded us that, when you arrange a funeral in China, you consult not only the wishes and needs of close family and those who knew the dead person but, also, the expectations of the ancestors. That’s quite a weight of responsibility and a considerable enrichment of a funeral. We could do with some of that here. 

There was a good spread of people from all areas of funerals. We all enjoyed swapping ideas, refreshing our thinking and learning new things. The people at CDAS are always very welcoming, and actively encourage ‘civilians’ to attend.

Regrettable, therefore, that not a single funeral director went. The debate about where funerals are going in an age of growing secularism and a rapidly changing landscape of dying is going to go on without them because it’s a debate that masses of people want to take part in and it’s urgent. Ideas are change agents, and the sideline, just now, is no place to stand. 

Sign up for the CDAS newsletter here

Twaddle rating: 6

When death is no longer the worst thing that can happen to you

Monday, 27 May 2013

76478-501-50_full

 

Phonobarbital — what they do you in with

 

It’s not the worthy efforts of the members of the Dying Matters coalition that have raised awareness of the need to talk about death and dying. What’s actually got more and more of us talking is our personal experiences of the difficult and protracted end-of-life suffering of members of our families. Alongside twenty-first century death agony, extinction is the least we have to fear. Bring it on, goes up the cry, as, just this week, the Falconer Assisted Dying Bill passed its first reading in the House of Lords, Vermont became the fourth state in the USA to legislate for assisted suicide (let’s call it what it is, shall we, Charlie?) and in liberal (if that’s the right word) Switzerland an 80 year old woman in perfectly good health appealed to the European Court of Human Rights to be allowed to go now rather than get any older. She’s had enough, thanks. 

Live issues in this debate are: 1) what constitutes suffering; 2) the right of the state to limit personal autonomy and an individual’s right to self-determination; 3) the duty of doctors to write a prescription for those who ask for a chemical exit; and 4) the protection of those going through a depressive patch or who are susceptible to duress from predatory relatives, etc.

Over time, of course, this is going to reconfigure attitudes to funerals. 

In the context of all this, I was struck by the following letter in last Sunday’s Sunday Times:  

It isn’t just dementia that thwarts our plans. I also dread the disease that robbed me of my mother, and the thought of my daughter changing my nappies and enduring tyrannical rages  and repeated conversations fills me with dismay.

So strong are my feelings that five years ago I wrote a detailed advance directive,  had it witnessed, shared it with my family and lodged a copy with my GP. I take little comfort from this as it  appears that some people — who do not know me but  have some religious or ethical opinion — are insisting they have more rights over my  body than me.

Why should the limited resources of this tiny planet be used on my dribbling, deranged shell when I’ve requested otherwise?

Sue Parkes, Halesowen, West Midlands

What taught Chuck about death?

Thursday, 23 May 2013

GRybus_WIM_ChuckLakin-6387

 

We like Chuck Lakin at the GFG. We’ve blogged about him here and here. Here’s his reply to the question ‘When did you begin learning about death?’

The precipitating incident was the death of my own father. This was in 1979 and he was home for the last six week of his life, and I’m glad to say I was there for the last month of that. And he was in his own bed with his wife and four kids touching him. It has been a very personal experience up until that point. And I didn’t know it before that, but I knew I wanted to be a part of whatever happened next. But I didn’t know what I could do. So, we called a funeral director. And he did what I’m sure he thought we wanted him to do, which was arrive promptly and zip dad in a body bag and take him away and mail us a box of ashes four days later. And that disconnect was very important to me. And it was almost 20 years later that I found the information that I needed that told me what I could have done at the point. I started giving people the information that they needed to have if they wanted the experience that I wanted to have when my father died. It has evolved past that. I started out just talking about home funerals. Now, I’m big on planning and making choices. It’s about thinking about it and making sure it is written down and you’ve had a conversation with the family. If you haven’t transmitted the information about what you’d like to have happen to your body to anybody, those people are going to have to make a lot of potentially expensive or contentious decisions. It’s a tragedy and it’s very stressful for everybody. If you’ve made the plans ahead of time, it can be a spiritual time. It can give them a chance to grieve.

Full interview here

Inheritance tax? LOL!

Friday, 22 March 2013

Old lady

 

Richard Rawlinson casts a jaded, end-of-life eye over this week’s Budget.

Boy George Osborne’s Budget did nothing to address the 40% IHT that clobbers so many after a death in the family.

There’s nowt to be done about the ridiculous significance of seven years but here are seven tips to avoid IHT:

1 Make your will sooner rather than later as there are exemptions available if they’re set in motion seven years before death. If you die intestate, you have no control over how your assets are distributed.

2 Gifts made seven years before death are free of IHT. However, if you reserve any benefit from a gift – such as continuing to live in a house you have given away – then HMRC may apply ‘gift with reservation’ rules to impose tax as if the transfer had never happened.

3 If you cannot afford to give large lump sums away, it makes sense to use smaller opportunities on a regular basis – such as the £3,000 per person annual allowance for gifts. There is also an allowance for each parent to give each child up to £5,000 to when they marry.

4 Family trusts can be set up to enable assets up to the IHT threshold to be sheltered from tax, so long as the donor survives seven years. Unlike outright gifts, these trusts let donors retain control of the assets, just in case your beneficiary has a penchant for fast cars, fast women and cocaine. 

5 On a sober note, where injuries suffered during military service are a contributory factor in anybody’s death, then that person’s estate may become entirely IHT-free. 

6 Some tax shelters cease to be effective after death. ISAs are popular ways of avoiding tax on income but they confer no protection against IHT. 

7 If retired overseas, one definition of domicile is the country in which you intend to be buried. If you are domiciled overseas, then only assets based in Britain will be subject to IHT, whereas IHT would cover your worldwide assets if you remained domiciled in Britain.

Cancer pain is uncontrolled in most of the world

Monday, 4 March 2013

Fergus-Ewing-visits-Glasg-006

 

To state the obvious: 1) most advanced cancer patients have pain, and 2) we have excellent pain medications which can effectively treat more than 90% of cancer pain. Therefore, most patients with cancer receive proper prescriptions for pain.  Obvious, yes?  True? No.

In Europe, Australia and North America narcotic analgesics are widely available, and frequently prescribed.  While there is access, many patients, particularly those in certain groups such as seniors and those with limited financial means, often receive insufficient doses and amounts, which only superficially address pain needs. Nonetheless, this partial success means that high income Countries use up to 95% of the world supply of morphine. 

Tragically, the remaining world population has its pain treated with the remaining 5%.

India is the world’s largest manufacturer of morphine, but the drug is almost unavailable in that country.  In much of the world archaic poorly designed laws designed to limit abuse fail to achieve that goal but instead limit access for patients in critical need.

The vast majority of narcotics prescribed to treat pain are not diverted from their therapeutic goal and do not contribute to dependence or addiction. On the other hand, ineffective, poorly designed efforts in global drug trafficking wars markedly reduce access for most patients, with cancer patients collateral victims of friendly fire.  This is a global problem and will require a world effort to stop the agony.

Read the whole article here

Page 1 of 612345...Last »