Archive for the ‘Planning for the end’ Category

I watched Harry die, and did nothing to stop it

Monday, February 20th, 2012

For the past 18 months I would call in to see my old friend Harry* on a Saturday or Sunday morning in his Clapham flat.

Our long friendship started when we were in our mid-20s. He and his first wife became very good friends to my wife and I, both fairly new to London, and they soon introduced us to their circle of friends.  Harry and I were particularly close thanks to our love of jazz and contemporary music which we listened to for hours two or three evenings a week.

The  seven or eight years of friendships, parties, holidays, dinners, pubs and clubs were the best years of our lives, ending when the ‘set’ drifted apart as kids came on the scene or couples split up.

Harry was even then, among a pretty hard living group, the heaviest drinker and user of recreational drugs.  He was also prone to attacks of depression which he put down to his childhood with a violent alcoholic father. It made Harry difficult to be with at times, irrationally angry towards those who loved him the most and prone to self-harm.

Following the failure of his first marriage, Harry’s life went slowly downhill, mainly due to his depression and alcoholism, though he and I kept in touch as he moved around London and then many years in Germany.

He had a zest and energy for life, when on good form, and gave wonderful parties always with new circles of interesting and delightful friends, and the rump of former social circles. Whether I saw him at these parties or just for a mid-day chat, he was always drinking, and he smoked 40 or 50 cigarettes a day.

This drinking and smoking continued throughout an unsuccessful marriage (his third I think) to a long suffering, warm German woman, and ten years of unemployed misery in Frankfurt. Unsurprisingly his physical and mental health deteriorated there and at the fourth or fifth attempt he finally came back to live first with a friend in Surrey and then on his own in a flat in South London.

I was shocked when I saw him, as the ravages of the drink and cigarettes had aged him terribly. One of the few things he brought back from Germany was a list of illnesses including emphysema, osteoporosis, myopathy and pulmonary oedema. The depression was far worse, sapping him of a will to live, to do nothing more than drink and smoke.

By this time Harry had fallen out with his two sisters (his only family) and most of his friends…so he asked me if I would visit him once or twice a week to get some shopping and clean the flat. As I was only a mile away, and still liked the old rogue, I agreed.

His shopping list always started with 200 Mayfair Smooth and three large bottles of gin and three bottles of tonic, a bottle of port and two bottles of wine.  There was not much in the way of healthy food.

After I put away the shopping we usually chatted, listened to some music before I made my excuses, coughing with the cigarette smoke and unable to bear any longer the sound of accumulated phlegm gurgling in his throat.

Recently the amount of food he wanted decreased…he was losing weight, getting more and more depressed.  He sought medical help but then refused to go to hospital or GP appointments. I, and one or two other friends who saw him occasionally, told him he was drinking and smoking himself to death, to which he replied ‘Good, that’s my business not yours.’

Harry started going downhill more rapidly two or three weeks ago. I was very worried this Saturday when I visited him as he had lost a lot of weight and didn’t have the energy to get himself out of his easy chair. I told him I was going to take him to hospital or call an ambulance to get him admitted. He got very bad tempered and told me not to interfere. I said that I was going to come round tomorrow (Sunday) and come what may ensure he got to hospital.

I was too late. I opened the door to his flat at 12.15 yesterday and he was curled up on the floor, stone cold dead, his head resting on towels he had by his easy chair.

I called the police, and then the ‘emergency services’ took over…did an excellent job, contacted the coroner and organised for Harry to be taken by a local funeral director to the nearest mortuary. On the advice of the police I left his flat before the fd arrived.

The police found a few numbers on his mobile, and I had the numbers of other old friends, so yesterday afternoon and evening was spent telling people and discussing the tragedy that was Harry’s last few years. His funeral will be sparse but not completely lonely.

It’s likely that I’ll be involved in the funeral arrangements…Harry refused to discuss anything to do with his funeral or death, in effect a focus group of one who saw no point in My Last Song.

Even so, I’ll spend some time going through my memories of the music we used to listen to endlessly when in our 20s and 30s. There will be an appropriate last song for Harry, and those who attend the farewell will know why it’s been chosen.

*Not his real name. Those who know ‘Harry’ will know who this is about. I’ve also not named the wonderful people who shared parts of his life and were not always appreciated by Harry for their love and friendship.

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Friends: a life or death matter

Friday, February 10th, 2012

Mark Easton, the BBC’s Home Editor, has rightly emphasised the importance of having friends or ‘company’ as an important factor in improving our health and increasing our longevity.

He decided to dig a bit deeper when the No 10 adviser said that loneliness is probably more dangerous to our health in retirement than smoking, to look at the research that underpinned that statement.

It is, as you’ll see if you clicked the link, pretty detailed and obtuse research which can be reduced to those with stronger social relationships had a 50 per cent increased likelihood of survival than those who lived more solitary lives.

Easton points out that research going back 30 years also showed that loneliness, or lack of social interaction, resulted in higher rates of mortality than expected.

These findings come under the heading of common sense. Humans have evolved as social creatures. Working and living together has enabled our survival and success. Being alone, not through choice but by circumstance we would rather avoid, makes us miserable, lethargic, demotivated and vulnerable.

He makes the point that if the evidence, not to mention our common sense understanding of our need for community and company, proves that loneliness is a ‘killer’, we should do more to prevent it.

Now whether it’s the job of the Government to try to make older people have more friends is doubtful. But they should give greater support to charities such as Contact the Elderly and Independent Age whose excellent schemes to reduce elderly isolation are underfunded.

They should also use the Big Society Network to create more intergenerational contact projects which will encourage young people to befriend older people and coach them to be more computer confident…and less lonely through use of the internet. The older people can impart their wisdom and knowledge to their younger friends who, in some cases, will be less likely to join gangs or participate in petty crime.

We at My Last Song are encouraged that the issues facing older people are now being seriously considered, whether it be funding their care, understanding how they want to die, giving them the send-off  they want and helping them living longer, healthier and happier lives.

Why is this important? Just look at the demographics of this country (and indeed the US where the research was carried out)…the 70 year old plus group is the fastest growing with almost 7 million people aged 70 and over by 2015 in England alone. There will be far more than this in the US. Their needs must be taken seriously.

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Validation for the My Last Song ‘Death Plan’

Thursday, February 2nd, 2012

Congratulations to the University of Nottingham, Dying Matters and the National End of Life Care Programme for producing the excellent Planning for your future care publication.

It is written in simple, positive prose and covers all aspects of Advance Care Planning including what is the most difficult aspect, ‘Opening the conversation’.  The tone for the leaflet is set in this telling phrase: ‘Not everyone will choose to engage in such a conversation and that is fine. However, talking and planning ahead means that your wishes are more likely to be known by others.’

I was particularly pleased that the leaflet covered wishes and preferences, and that these included some of the end of life experience defined in the My Last Song ‘death plan.’  Planning for your future care suggests where you want to be, who you want to be with, types of treatment, ‘how you like to do things,’ with examples such as sleeping with the light on or having a shower instead of a bath.

If you, or an ailing loved one,  want to have a ‘good death’ instead of a lonely, frightening end of life, then read Planning for your future care and act on its advice. To make the end of life experience as good as it can be,  fill in your own personal death plan, a template for which is available in the My Last Song Lifebox.

The wishes and preferences are more holistic, covering the music you want to hear; the smells you want surrounding you; the food and drink you wish to taste; the sensations you want your body to feel, such as caressing, massaging, stroking; what you want to see, such as a lovely view or your favourite photographs; how you want to look – clothes, make up, hair style; and ensuring the practical issues are resolved so you have no concerns.

By involving loved ones, doctors and if appropriate ministers of religion or spiritual advisers, having a death plan will go a considerable way to ensuring, if possible, the death is as comfortable and comforting as possible.

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The chances of having a ‘good death’ are still slim

Monday, January 23rd, 2012

There’s a lot happening in the normally quiet death and dying space.  Much of this activity is due to the London Southbank Centre’s courageous decision to put on a week’s events centred on death, in an attempt to reduce society’s reluctance to face mortality.

Part of this will be Sandi Toksvig’s memorial lecture, which she trails with her trademark endearing and engaging wit here.

I’m also looking forward to Paul Gambaccini’s Desert Island Death Discs event, as it will look at the top funeral songs and what they tell us us about our attitudes to departing this world. Will he, I wonder, have gone through the 130 or so lists of farewell songs sent in by visitors to My Last Song?

The Natural Burial Ground’s funeral survey results have also been released, and have some interesting if rather partial findings. The survey has clearly and unsurprisingly been answered mainly by those in or close to the funeral business. What we liked about the results was the large percentages of people who go online to get information about funerals and who have written down or told relatives of their funeral wishes.

Sadly as these wishes are often misplaced or disregarded, such admirable intentions are a waste of time. Which is why people should store their funeral wishes and the vital information required by close loved ones immediately after the death in their own Lifebox.

High on the news agenda today was the story that data from the Office for National Statistics showed that dehydration or malnutrition was linked to 25 deaths every week last year. This is the shocking and depressing counterpoint to the admirable efforts others are making, often out of benevolent self interest, to encourage a change in how the British in particular look at death.

Depressingly it is still true that the vast majority of people don’t think about death and don’t talk about death until it is literally too late. And so the chances of having a good death are still remote as we pointed out earlier, with almost 70 per cent of people dying in hospitals or hospices even though over two thirds say they want to die at home.

My Last Song has supported the case for the terminally ill and the ailing elderly to have their own personal death plans, rather as mums-to-be have birth plans. This way the issues surrounding the end of life can be addressed in as calm a way as possible, with the involvement of loved ones, medical professionals and if appropriate, ministers of religion or other comforters.

After some research we created a holistic death plan template which covers emotional, physical, medical, practical and spiritual issues to make the end of life as comfortable and comforting as possible.

Funeral wishes, death plans and the raising of the public’s consciousness about death and dying are pointing in the right direction, but there’s still a long way to go.

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At last, we’re talking about death

Monday, January 16th, 2012

When I started My Last Song four long years ago death, dying and bereavement were subjects rarely covered by media old or new. I had been to two funerals which were dreadfully inappropriate farewells and thought there must be a better way…from that My Last Song developed.

At one stage it had the strapline: Because a good life deserves a good ending, and that’s still our view.

Since then there has been an increasingly rapid change of attitude, highlighted by two or three events which, though small themselves, are significant because of what they signal.

But before that, mention should be made of organisations which have worked hard to change society’s view of how we end our lives. Dying Matters, set up in 2009 by the National Council for Palliative Care, works tirelessly to deliver its aim to change public knowledge, attitudes and behaviours towards death, dying and bereavement.

Dignity in Dying is hugely effective in educating the public in their rights to have a good death, including the option of an assisted death for the terminally ill.

The British Humanist Association has publicised the virtues of a humanist funeral for those who have no religious beliefs and the Institute of Civil Funerals have ensured that civil funerals, often a mix of religious and secular, are conducted to a high standard.

And no summary of changes to funerals would be complete without mentioning The Good Funeral Guide who recommends those funeral directors who are moving with the times, and whose criticisms of the Cooperative Funeralcare and Dignity chains are founded on their sometimes appalling failings in customer care standards.

What of the smaller events which confirm the trend towards taking control of the end of life is gaining momentum?

First, the blog posted by ‘grief specialist’ Kristie West entitled Can A Funeral Be Beautiful? This highlights the film, Remembering Josh Edmonds, a poignant tribute video of a 22 year-old’s life and extraordinarily personal funeral. Making this film was his family’s way of celebrating Josh’s life, something that would have been unheard of a few years ago when the only acceptable way of treating a young death would have been to emphasise the tragic grief of a life taken too early.

At the other end of life’s passage, the Chicago Tribune highlighted what they call ‘Dignity Therapy’ which takes the form of interviewing the dying patient to record their messages to their loved ones, transcribing it and then producing a leather bound ‘legacy document.’

In this country, a similar service is provided by A Giving Tribute, an excellent start up which deserves great success.

The ever growing popularity of green funerals and the ‘natural death’ movement also shows that people are discussing the end of life event they want rather than leaving it to the local funeral director.

More radical still is the Death Café, currently only in London, but planning to expand to other parts of the UK, where, in the words of their website, ‘strangers come together to discuss death and eat delicious food.’ I plan to attend the next Death Café day, and will hopefully add to the favourable reports.

Note too that the photographers specialising in funeral photography, something that would have been frowned up a few years ago.  Farewell Photos and Funeography deserve a mention.

As for My Last Song, the growing use of the Lifebox where people store their funeral wishes, life stories, details to help their loved ones cope following their deaths shows the idea is increasingly appealing as is the number of people visiting the page describing the benefits of having individual death plans to ensure, as much as possible, you can have a comfortable and comforting death.

So at last we are changing our attitude to death, dying and bereavement, influenced for too long by Queen Victoria’s lifelong despair at the death of Prince Albert, into something we should discuss and be in control of.

Our deaths should be just as important as the rest of our lives, and thought of like this, a good life will indeed have a good ending.

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How doctors want to die

Wednesday, January 4th, 2012

I would like to draw your attention to interesting content put on the internet recently by Ken Murray, a Clinical Assistant Professor of Family Medicine at the University of Southern California.

Entitled How Doctors Die, it is puts the case for non-intervention once death is inevitable.

It argues that advances in medical science and equipment combined with the professional requirements of doctors  to keep people alive as long as possible has increased the likelihood of futile intervention and unnecessary suffering.

Tellingly, he states that doctors themselves are horrified of the prospect of ending their lives in such circumstances and are choosing in ever increasing numbers to insist that their fellow physicians do not intervene if death is inevitable.

“They want to be sure, when the time comes, that no heroic measures will happen – that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (cardiopulmonary resuscitation).

“Almost all medical professionals have seen what we call ‘futile care’ being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs.

“All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery…I cannot count the number of times fellow physicians have told me, in words that vary only slightly, ‘Promise me if you find me like this that you’ll kill me.’ They mean it.”

My Last Song believes a good life deserves a good death, and that futile intervention and prolonging suffering is not a good death.

We also believe that we should be in charge of how we want to die, not leave it to our loved ones – which is unfair, or medical professionals – which is too random.

We have argued many times in the past that society should face up to death and dying in a more positive, emotion-free way than is currently the case, and that this will be more likely if people are encouraged to discuss how their own death should be managed.

We have created a holistic death plan template which includes medical, emotional, physical and spiritual issues to be agreed, as well as advice on things that need to be sorted before death to prevent stressful worries. 

Used properly, and involving the patient, their close loved ones, their medical professionals – and if appropriate a minister of religion, it will be a major step in achieving a comfortable, comforting death.

It’s the death that doctors want for themselves and that should be the norm for the rest of us.

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Gay funeral denial causes terrible hurt

Friday, December 30th, 2011

I was saddened to receive this contribution to the Gay and Lesbian Funeral Issues section of My Last Song by a contributor who asked not to have his identity revealed.

It is appalling that such cruel attitudes still prevail, and difficult to know how to counter them apart from being more honest and planning for the inevitable death of a partner in a same sex relationship and how the funeral will be handled.

I would like to hear the experiences of others in similar situations and any advice they have.

“My first, and only, partner died six months ago. We were together nine years, but we unwisely delayed getting a civil partnership and he was only ‘out’ to his close family and a few mutual friends.

As a result, I had no rights when it came to his funeral. All the major decisions were made by his grieving mother, who told me that it would break her heart to have someone stand up and talk about her son being gay.

I was allowed to attend the funeral, and as the only person able to use a computer properly I was tasked with composing the eulogy as it was dictated by her family. However, I was not allowed to be mentioned in it, and at the funeral the mourners were hustled out of the church quickly by his family to avoid me talking to them.

There is no point trying to explain how psychologically mangled this has left me, I leave it to your imagination.

Suffice to say, those you think these attitudes are a thing of the past are horribly, horribly wrong.  It is no exaggeration to say that the two worst events in my life were, in order, his death and his funeral.”

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Why we must respect our elderly

Monday, November 28th, 2011

Geraldine Beddel, editor of Gransnet, wrote a very thoughtful piece last week which argued that our society has unwittingly colluded in the mistreatment of old people by our widespread casual ageism.

Her thesis is that until we respect our elders, the pernicious cruelty towards old people will continue.

While I agree with her arguments I would like to make two observations.

The first is that these attitudes are far more prevalent in the indigenous, longer established population and much less in the families from Africa and Asia where the wisdom of age is much more valued and respected.

People from these continents are used to seeing their elders work hard, without the protection of a welfare state and pension schemes. In these cultures, a person is brought up and protected by the extended family, and as they get older they then look after those who’ve looked after them. 

There’s self interest and community interest at heart here, and it works well. Where this family/community protection is replaced by the state or other institutions, the appreciation of the human relationship is rapidly diluted. 

When transplanted into this country, such respect for older people remains for one or two generations. I know several African families very well, and respect for elders is a value that is instilled into the children. Any ageist remark or attitude is sometimes literally slapped down.

The second point is that we should value old people not just because they brought us up, but because they have so much to teach us. Again this is where communities from less developed countries can illuminate our failings.

Their idea of education was less through formal schooling and more from the passing down of wisdom, ideas, values and experience from generation to generation. The collective learning of old people was critical to the success or failure of a family, village or tribe.

In our more developed culture, old people may not play such an educational role, but their memories, life stories, achievements, attitudes make up micro social and family histories.

We should understand their worth and do all we can to keep them, because once lost they are lost forever.

This is why the Lifebox is such a useful service.  It’s an online secure area designed to enable personal histories to be uploaded and stored, then to be accessed by chosen younger family members.

It’s probable that many older people who will want a Lifebox will need the help of younger family members to populate it, and in doing so, the bonding between young and old will increase the mutual intergenerational respect.

This in turn will reduce our tendency, pointed out by Geraldine Bedell, to dismiss the value of our older family members.

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Lifebox will help intergenerational bonding

Wednesday, November 16th, 2011

Penelope Keith, now one of our ‘institutions’, has written in the Daily Telegraph that if younger people mixed more with older people they would be less inclined to break the law.

The star of The Good Life and To The Manor Born is president of a prisons charity which works to divert young people away from a life of crime.

She believes that teenagers and young adults would behave better if they spent more time with grandparents and other older people.

I hope she would like the idea of the Lifebox, the area in My Last Song where people can store and upload their digital memories so they are available for future generations. In effect it’s a digital time capsule.

The reason it should find favour with Ms Keith is that it is ideally suited to encourage younger members of the family to help older members use it. And in doing so, they will learn the lifestories and family history being imparted. This bonding might indeed make youngsters more law abiding. 

For in return, the young relatives will teach their grandparents and other older loved ones to use a computer with more confidence, the result being a unique and valued piece of family and social history which otherwise would be lost forever. The soft skills coaching of their elders will give youngsters a greater sense of purpose and self esteem.

If your family could benefit from all the features of the Lifebox, including drawing the generations closer together and older people being more computer literate, look no further than buying a Lifebox for the person whose memories should be safely stored, or for the youngster to show to his grandparents, ready to sit down and populate it every week or so.

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We’ve been paid too much for doing too little for too long

Friday, November 11th, 2011

During the past 40 years or so, a huge numbers of people in the poorer nations have been paid not much for doing a lot, while in the developed world many people have been paid a lot for doing not much.

And that, dear readers, is why there is now an irrevocable shift in the world’s economic order.

Those in the UK will be aware of the scores of thousands of jobs in the public sector, created by Labour and Conservative governments, which are not in the slightest bit productive. Many, but by no means all, are necessary to make our society run more smoothly, to help the disadvantaged, to regulate, to administer, to advise.

The private sector is also teeming with well paid overstaffed functions which produce little of value at one end of the scale, and hugely overpaid executives and directors at the other.

The service industries are particularly good at paying their staff a lot of money by providing services that might add value, but produce little that has a tangible long term worth.

In private and public sectors, the pay and conditions have been protected first by trade unions and later by the collective greed of workers and bosses scratching each others’ backs, unified by the shallow values of the baby boomers. Lots of people shouting ‘Me, Me, Me!’ soon becomes ‘Us, Us, Us!’.

Until only a short time ago, our pay increased every year, bonuses went up, pensions rose and our working life reduced.  As we live longer, our retirement extends and with it the time greater numbers of people are being paid for doing nothing.

We are now facing the consequences of an economy which has for decades been based on unproductive overpaid employment as our population grows increasingly old.

Meanwhile in countries such as India, China, Brazil, Vietnam, Korea, and increasingly in Africa and South America, vast and growing numbers of people have been working very hard from an early age until they expire making goods or harvesting food or extracting raw materials, all of which are sold for a profit. Their pay has been low, and kept low – talk of workers’ rights getting you imprisoned or laughed at.

In the UK, the increased income was used to borrow to buy property on the erroneous assumption that this would permanently gain in value. With our property as a safety net, we cheerfully got further in debt to buy more goods and foodstuffs, most of them made and grown by the millions upon millions of people in the by now fast developing world.

And so those countries grew richer as we got more in debt. That debt couldn’t be sustained once the property edifice started to shake and values dropped. Banks had huge books of toxic debt, interbank lending ceased and overstretched banks had to be bailed out by the government.

In many other developed states without a solid manufacturing base and without a well developed service sector, the situation is worse. In the southern European countries productivity per head is falling from a low figure, pensions are over generous, retirement age is in the 50s, working hours are low, unemployment high and tax payments a small proportion of what they should be.

Contradictions within the EU mean that a common currency is untenable; Germany will be able to make the financial rules, and enforce the austerity measures for a two tier Europe.

The electorates in these countries won’t like being told to accept reduced hand outs, pensions, to work longer and harder, but fundamental economic decisions won’t be influenced by the ballot box as much as by the markets and credit rating companies.

Funding the bail out of bankrupt economies are those countries in the developing world who have become very rich as money has flowed into their treasuries from the developed nations. China, India and the emerging economic countries will get us out of this mess, because it’s in their interest to do so, but the rules will be forever changed.

So the world is now one where in the west our lives are less influenced by democratic decisions than by the bond markets; Germany has gained economic and political hegemony in much of Europe, and countries such as China and India are more powerful than the UK, France, Italy, Spain and before long the US.

It was never supposed to be like this, but we had better realise that the old order, shaped by statesmen and industrialists after the second world war, has changed forever.

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