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.

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.

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.

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.

The review into Palliative Care, led by the chief executive of Marie Curie Cancer Care, Thomas Hughes-Hallett, has highlighted the fact that very many dying people don’t have the end of life experience they want.

Instead of a ‘good death’ with their loved ones by them, their emotional, physical and spiritual needs being met, they will be taken to a hospital where, quite often, a lonely, frightening and upsetting death awaits them.

My Last Song has produced an innovative and holistic ‘Death Plan’ template to encourage discussion about a person’s last days so that they have a ‘good death’.  The areas covered in the plan include medical treatment, physical comfort, emotional and spiritual needs and ways in which stress and fear can be reduced.

The questions are designed to involve the patient’s doctor, close family and friends and even professional advisers so that the person whose life is ending has no concerns about issues, such as their will or who looks after their pets, as the plan enables these topics to be addressed.

At the very least, death plans such as this enable death and dying to be talked about in an calm, unemotional and rational way. All too often talk of death is put off as it is too upsetting or awkward until it is too late.

At best, it means that the patient and loved ones are in control of the end of life experience, and the death is as comfortable, comforting and reassuring as possible.

The My Last Song death plan is easy to fill out, it can be edited at any time and stored securely in the Lifebox, along with all the other end of life information such as funeral wishes that close family members and the executor will need.

 The theme of this year’s Dying Matters Coalition Awareness Week (16 to 22 May) is ‘Why Dying Matters to me’ which is as good as any to get people to address the taboo surrounding death.

I fully support the aims of Dying Matters, a broad coalition headed by the National Council for Palliative Care, to raise awareness of death, dying and bereavement. This shouldn’t come as a huge surprise since My Last Song was established in the belief that more people would address their mortality on line, and use My Last Song to ‘Go out on a high note.’

I take heart in the increasing signs that society is more ready to address the subject of death in a positive way. This, I think, is because people are living longer and therefore most deaths don’t cause the terrible grieving such as Queen Victoria’s reaction to the early passing of her beloved Prince Albert.

So, does the ending of a long and fulfilled life mean that death is easier to address?  Is it also easier to accept given a medical diagnosis of a terminal illness that allows time to come to terms with a life that will end?

For many people the thought of discussing the end of life causes distress, anxiety and embarrassment, and they want to put it off. However, as Dying Matters understands, if you face the subject from a more informed and positive approach, the negatives are reduced.

My Last Song has produced an innovative and holistic ‘Death Plan’ template to encourage discussion about a person’s last days alive so that they have a ‘good death’.  The issues that are covered include medical treatment, physical comfort, emotional and spiritual needs and ways in which stress and fear can be reduced.

The questions are designed to involve the person’s doctor, close family and friends and even professional advisers so that the person whose life is ending has no concerns about issues, such as their will or who looks after their pets, that should have been resolved.

I hope that all those who support Dying Matters and who will use this week to raise awareness will also see the benefits of promoting personalised death plans as a way of reducing the fear of dying and increasing our control over how we end our lives.

I don’t have a television…when, on those rare occasions there is something I want to watch, I ask various friends and ex-partners if I can pop round. The answer is normally yes, and the added bonus is I get snacks and a decent glass of wine at the very least.

I felt unable to call on this resort last night as the programme I wanted to watch was Dispatches on Channel 4 which featured three people close to death who filmed the treatment they were given by the NHS.

I tried to watch it on my PC, but the broadband connection was playing up, so I only watched a little but what I saw was shocking, and this has been confirmed by comments, particularly those on the Dying Matters facebook page.

NHS end of life treatment is appalling, but this is to a large extent due to the client base having such low expectations and failing to demand better service.

Contrast it to the facilities and level of treatment provided to expectant mothers.

Mothers-to-be are given lots of advice, midwives and pre-natal specialists encourage questions, maternity wards are colourful, pleasant, uplifting places and individual birth plans are discussed. There’s a sense of well-being and an openness in facing the forthcoming event.

Death is as inevitable as the birth, but it’s treated very differently. Of course, one doesn’t expect medical staff to approach the end of a life with cheerful smiles. There needs to be a much more sympathetic and careful approach.

But as the Dispatches programme proved, sympathy and understanding are often sadly lacking when NHS staff deal with the dying, and it’s mainly due to the fact that families of the very elderly don’t address the forthcoming death.

Until people are able to look a doctor or nurse in the eye and say ‘I want to discuss how you will treat my loved one at the end of their life’ things will change hardly at all. While we continue to ignore death, find it uncomfortable to address, postpone the distress or just hand the consequences to others, we shouldn’t complain too much if the quality of its medical care management falls below our expectations.

I’ve gone on about it before, but a major step to improve this situation will be the acceptance of personal death plans which will involve the ailing patient, close loved ones and the appropriate medical professionals.

The My Last Song death plan is a holistic model, covering more than medical treatment but also the mental, emotional and spiritual needs of the patient so that at the end of life the dying person is in a state of comfort, peace, contentment and happiness.

There may or may not be a journey then embarked on, but if there is, it’s a good place from where to start.

Today’s damning review by the Health Service Ombudsman of the medical treatment of elderly patients will make frightening reading for hundreds of thousands of older people and their loved ones.

The ombudsman, Ann Abraham, said the patients whose cases she reviewed suffered unnecessary pain, neglect and distress.

Her review is even more chilling when one bears in mind the huge increase in the number of older people the NHS will be treating in the years ahead. Those who are 70 and older are the fastest growing section of the population and in 2015 will measure well over seven million in England alone.

It is a sad fact that many old people who are admitted to hospital then die there, against their wishes and those of their loved ones.

This desire not to end one’s life in hospital will be made stronger by the growing belief that the standard of medical care will not be of the expected level, highlighted by today’s findings.

So it is even more essential then to address the uncomfortable issues about end of life treatment, care levels and, yes, death.

People are entitled to a ‘good death’, not a lonely, frightening and sad ending.

Which is why I’m such a strong advocate of the introduction of personalised death plans. These will encourage the ailing, their close family members and their doctors to address issues such as the level of medical intervention and where they wish to die.

The death plan provided by My Last Song also includes decisions such as who the dying patient wants to be present, the spiritual needs of the patient and the issues that will, as much as possible, ensure a ‘good death’, such as the music or readings they want to hear, the aromas they want to smell, the way they want to be touched and the comforting mental state of knowing their affairs are in order, their loved ones, pets, possessions etc have been properly dealt with and their funeral wishes will be carried out.

Until our society takes a much more proactive and responsible attitude to dying, death and the way in which our elderly are treated when in hospital or indeed other places in which they receive care, we will continue to read reports of unacceptable yet avoidable cases of their poor medical treatment and unnecessary suffering.

Death plans must become more commonly accepted ways in which we take control of our ‘end of life’ experience, for the benefit of the old, their families and those whose task it is to provide treatment, care and comfort.

A ‘good death’ is becoming more discussed as more people get older. The increasing numbers of people aged 70 and over coincides with other societal changes including the breakdown of the family support system, fewer people with strong religious beliefs and reduced resources for a health service that will have to deliver more end of life care.

The previous Government, aware of the growing need to address the issues, launched an End of Life Care strategy in July 2008. The strategy is supported by National End of Life Care Programme and £286 million of Government money.

It’s informative to visit the website and look at the vast amount of work that is being done as part of the programme. The work, the goodwill, the case studies, the references to publications would be commendable if there was a clear focus on what the programme wants to achieve: high quality, person-centred care for all adults at the end of life and enabling more people nearing end of life to choose where they die.

However, the Programme has grown like topsy and the more it grows, the further it is from achieving these aims.

It is a good example of the wasteful cost and confusion of trying to find a top down solution to what is the most individual of any health care situation – caring for a dying person.

So far the mixture of academics, care workers, medical professionals, think tank researchers and other well meaning individuals have not found the solution and they never will.

The present government recognises that inflexible, bureaucratic, centrally imposed and expensive solutions to society’s complex problems are doomed to failure. It is redefining the state’s relationship with civil society by reducing the role and cost of the state and hoping to increase personal and community responsibility and participation.

The success or failure of this experiment will define society’s progress for the first half of the 21st century.

As far as the end of life care is concerned, delivering a good death requires more emotional capital to be invested than currently the case and less money than currently anticipated.

Planning a ‘good death’ must involve family, friends and appropriate medical professionals. Coming together to address the subject of death and dying will necessarily overcome the still common fear of discussing the subject until it is literally too late.

There is not a great deal of point spending large amounts of money on end of life care as death can’t be defeated only delayed. Of course, the pain, suffering and fear can be managed and reduced but this shouldn’t be expensive.

If GPs and palliative care specialists insisted that patients completed a personal death plan, and if family members felt comfortable in encouraging older loved ones to fill in their plans, a good death would be a far more likely outcome than anything that will emerge from the current hotchpotch of case studies and models coming out of the National End of Life Care Programme.

Important players in changing attitudes will be the excellent hospice movement and the Dying Matters Coalition which, if properly funded, could lead the move to rid our society of the taboo surrounding death and dying. If people talk about death and plan for it – their own or that of an ailing loved one, or in the case of the medical profession a patient – the more likely will be a ‘good death’ instead of a lonely and impersonal passing.

Currently just a small dot on the radar is the ‘soul midwives‘ movement which is a voluntary group of women who want to give spiritual, physical and existential comfort to the dying.  It will be interesting to see if this becomes a growing movement or whether friends and family will be able to administer the same kind of holistic end of life care.

Co-operative Funeralcare’s use of an industry trends survey to place the brand as ‘thought leader’ in their industry is a well worn marketing device.

But the survey doesn’t tell us anything we don’t know, and in reality highlights the Co-op’s attempt to catch up.  In short the survey of 2000 people and 850 of its funeral companies confirms that more people now want a celebration of their life, colourful events, secular songs, bespoke coffins, green funerals and personal input from mourners.

The Co-op have involved the country’s leading funeral historian, Dr Julian Litten, to opine that the funerals of Princess Diana and Jade Goody have changed the public’s view of how funerals can be delivered.

I think Dr Litten is wrong about this.  The British public can decide for themselves that a religious ritual isn’t appropriate for someone who had no religious beliefs and that as paying customers they will have the send off they want rather than a ‘choose one from three options’ offered by many funeral directors.

Similarly, there wasn’t much that was environmentally friendly about Princess Di’s and Jade Goody’s funerals, yet the demand for green funerals has risen hugely in the last 15 years as people become more concerned about the environmentally damaging aspects of traditional funerals.

No, organisations like the Co-operative Funeralcare have been slow to understand the change in demand whereas innovators such as My Last Song, One Life ceremonies, the green burial movement, suppliers of bespoke coffins and authors of guides such as The Good Funeral Guide have understood the requirements of the now ageing baby boomers and are meeting their needs.

The number of humanist officiants is increasing to meet the demands of atheists for humanist funerals, and I would like to commend the effort put in by one in particular, Simon Allen, who’s contribution to My Last Song has been invaluable.

The funeral industry is on the verge of a big change in how it operates, and this change is driven by consumer demand. Funeral directors are, inevitably, traditional and slow to change although there are notable exceptions.

But they must recognise that many new customers will be from the generation who, when in their teens redefined youth culture. During the next years of their lives they expected to get what they wanted and that’s going to be true for how their end of life (or their older relatives)  is treated.

The one statistic that is still disappointing if not surprising is that 55 per cent of respondents hadn’t discussed their funerals with family and friends.  Death and funerals are still taboo subjects, but the trend I suspect is for this to be reducing, helped by the growing number of online sources of support and information.

I will again plug the Lifebox facility of My Last Song which encourages and enables people to plan their own bespoke funeral event and store those plans and wishes safely for their loved ones to access.  In practice filling in the funeral wishes checklist and the individual death plan will mean discussing the options with close family members.

When death and funerals are more commonly discussed, the numbers of celebratory, colourful and individual ceremonies requested will increase…whether the larger traditional funeral companies are well placed to deliver them efficiently is questionable.