Category Archives: End-of-life issues

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

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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

Why doctors say no

Wednesday, 27 February 2013

CPR

 

Physicians see and treat patients who have undergone CPR. Those patients are usually paralyzed, swollen with fluid, and unconscious. Upon witnessing that, physicians might wonder what the differences are between “living” and “existing”.

This could explain why their end-of-life care preferences differ from that of the general public.

Source

 

Why doctors can’t talk about death

Tuesday, 26 February 2013

fortean_times_6142_7

 

“Psychoanalysts believe that emotional trauma in human life is because man is not really a god and is something more than just an animal. He is a demi-god and being a demi-god is hard.  He can create and appreciate goodness, enjoy the wonder and awe of each day; teach, learn, and dream, but at the same time, he can see into the future and knows his fate.  His mind can conceive flying through the air, staying awake for days or living to be 10,000, but he is denied by the limitations of his flesh.  This results in life long stress and in order to cope man uses various psychological strategies, including repression and denial, to focus on each day and each moment and not go truly mad.

When someone becomes ill with a life threatening illness such as cancer, their ability to deny the animal part of their existence may collapse.  Suddenly they are less god than ailing beast. This can cause terrible anxiety, confusion and depression, as their personality is threatened by physical deterioration and critical coping mechanisms fail.  At these critical times, the support of a physician who understands the core balance of the human condition can be most valuable.

“However, it seems to me that doctors do not talk about death to their patients, not because they do not care, but because doctors do not know how to deal with the god, they only understand the animal.”

Source

Afore ye go

Tuesday, 26 February 2013

RMN

 

We think you’ll agree with us that RecordMeNow.org is a Very Good Thing.

It’s downloadable software that enables you, using the little camera in your computer screen, to record your thoughts about your life, and other things besides, for your children, partner, family, you name it.

The creators especially had children in mind, because children can go through life with all sorts of unresolved questions about a dead parent — the sorts of questions which never go away and prevent them from living fully. One child said:

“Particularly after long illness followed by such family sadness, I had significant feelings of guilt about feeling happy in later life. Permission from him directly would have been really good.”

Another said:

“I felt that without my mum’s advice, we were somehow betraying her by accepting future relationships especially when dad found a future wife years later.”

Another said:

“I just want to see and hear her say she loves me, once more.”

So the RecordMeNow researchers interviewed more than 100 volunteers who had lost one or both parents before the age of 16:

They were asked a series of questions regarding their loss, their prior knowledge and their subsequent educational, social  and professional development. They were also asked what questions they wished they could have had answered about or by the parent who died. 

Using the RecordMeNow app, you work your way through these questions and create a DVD. 

RecordMeNow is a nonprofit founded by some incredibly nice, bright people. Do check it out. 

 

 

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