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.

There is a societal change taking place which the Farewell Innovators (My Last Song included) are part of, and which the Dying Matters Coalition is heading.

It is the belated recognition that the baby boomer generation born in the two decades following the end of the second world war is now reaching the latter years of their lives and that their end of life expectations will need to be met.

It’s becoming rather un-PC to call them old, or elderly, not least because they don’t think they are. Indeed, with more people living to 100, those in their 60s and 70s aren’t really old any more.

More acceptable terms are elders, which has a ring of wisdom attached to it, and seniors which connotes greater experience.

Unlike the generations before them, this group – let’s call them superior seniors – will take more control of their end of life experiences. Baby boomers have been criticised for being the ‘me, me, me’ generation who get what they want.  This attitude isn’t going to change as baby boomers become superior seniors.

They will want better health care so they lead longer and healthier lives. They will want to be independent as long as possible, and when looked after will expect a higher standard of service from care providers.

When the end of their lives is approaching, they will want to be involved in the decisions previously taken by family members or their doctors about how much medical intervention they want to receive and where they want to die.

And when they die, they will want their lives to be remembered positively and uniquely with a high quality farewell ceremony or service.

Superior seniors will have learned from the end of life experiences of their parents’ generation and not been impressed by poor quality care delivery, hardly reassured by the NHS end of life medical care lottery and disappointed by anonymous, dreary send offs.

We are at a point when the future tense is changing to the present…time is passing, years are being added to the ages of the baby boomers. If not old, they are no longer young.

The farewell innovators are those companies and organisations who want to give this increasingly large market (by 2015 there will be well over ten million people aged 65 or older) a better farewell experience.

Central to this approach is the move towards a ‘good death’, the achieving of which is the purpose of the Dying Matters Coalition. It means the ailing patients, their families and their doctors have to address dying and death openly and positively to make the end of life experience as comfortable as possible. The My Last Song death plan is an holistic approach to organising a comfortable death.

While all this signals the retreat of the pervasive Anglo Saxon death taboo, superior seniors and the farewell innovators who wish to provide services for them should not be complacent.

Death is sad, upsetting, worrying and uncomfortable to discuss. It is often easier to ignore, but if not addressed, superior seniors can hardly complain if the end of life decisions are made by their families or health professionals, not always for the reasons they would have chosen.

As this government puts an inclusive, collaborative and mutually supportive Big Society at the top of its agenda, it must do more to encourage better living standards and the delivery of a ‘good’ death for the increasingly large numbers of superior seniors who will not expect to be left out of the tent.

AND stands for Allow Natural Death, and it’s a phrase that American researchers believe will catch on more than the current phrase, Do Not Resuscitate.

The issue about end of life medical treatment is as topical in the US as it is in this country.

In both societies, neither ailing older people nor their younger family members are comfortable talking about death. It’s therefore surrounded by fear of the unknown, and as nobody likes to talk of what they are afraid about, so the taboo about addressing death continues.

Usually late in the patient’s life, he or she will say that ‘I don’t want to be hooked up to lots of machines,’ or ‘I want it to happen quickly.’

How this view is communicated to the health professionals providing end of life treatment is again the subject of confusion and reluctance to address the issue. The patient’s life is therefore often unnecessarily prolonged, the family’s anguish stretches out and the medical staff are not certain how to proceed.

A simple form of words can change this, and the acronym AND is really very simple.

Research in the States has shown that the phrase Do Not Resuscitate is not used by many families because it is a negative and sounds scary, whereas Allow Natural Death (AND) connotes a positive, it implies permission.

It also gains plus points because it uses the word Natural, as in Natural Childbirth and Natural foods.

What starts in the US quickly cross the ‘pond’, and because part of My Last Song’s mission is to encourage people to address their later life decisions before it’s too late, we think AND should be adopted in the UK.

It will give impetus to the Dying Matters coalition’s goal of changing attitudes towards death, dying and bereavement and make it more likely that the patient, the patient’s family and the family GP will discuss the chosen end of life treatment.

My Last Song has created a Death Plan template, within the Lifebox, which makes it easier for people to make the decisions that will result in a ‘good death’. The old and terminally ill will be more in control of the end of life experience they want.

It will encourage families and GPs to talk about death and to plan for it thus reducing the fear of the unknown.

We only die once and, if possible, it should be the experience we want it to be.

The Demos report, Dying For Change, is a closely argued and important pamphlet.

For those without much time I commend the executive summary, and for those with less time, the thesis of the report is as follows.

The demographics of this country mean more people will be dying of old age every year. Such deaths are usually drawn out, complex and costly.

The good news is that much of our extended lives will be better spent…the bad news though is that we are more likely to die lonely and impersonal deaths in hospitals, hospices and care homes. Not surprisingly,  two thirds of people asked in a related survey wanted to die at home.

To reverse the increasing numbers of people who will die in hospital, and to reduce the escalating end of life costs to the NHS, Demos propose some radical changes.

The least radical is to improve the way hospitals and care homes look after people who are dying.

Improving these services won’t meet people’s aspirations to die at home, nor will they reduce the costs to the NHS. So Demos put forward effective community alternatives.

The report suggests that the NHS should invest £500 million a year, only 2.5 per cent of its spending on end of life care, “to create the backbone for community services” to allow a far higher number people to die at or close to home.

These community services include:

• Creating new places for people to die close to home where they could be with friends and family;
• Strengthened family capacity to care by providing a dedicated compassionate care benefit or care leave entitlement to provide financial support to look after a dying relative;
• Creating a properly trained volunteer support network;
• Setting up dedicated 24/7 nursing support;
• Establishing dedicated end of life telephone help lines;
• Setting up a national ‘hospice at home’ service to tend those dying at home;
• Providing people with a key relationship to end of life advisers.

I can only praise a report that addresses the issues that My Last Song faces full on, and in particular the confirmation that the only way to improve how we die is by people addressing dying. As the report points out people are frightened not by death but by dying because family and many family doctors are unable to talk about it. Ignorance and fear go hand in hand, and fear is not what you should feel as you approach your end.

Which is a prompt for me to extol the virtues of the death plan which is in the My Last Song Lifebox, ready to be filled in when most convenient, and with the participation of close family and even the family doctor.

This is not another version of the Advanced Care Plans or Preferred Priorities of Care forms which concentrate on the medical care and treatment.

The My Last Song death plan instead addresses the more spiritual and existential needs of a dying person.

Who do they want to be present? What do they want to see? What do they want to hear? What do they want to smell? How do they want to be touched? How much do they want that their loved ones to know?

The death plan also enables them to be reassured their affairs are in order and that they need have no concerns about family, friends or pets.

If the patient, the family and the medical staff collaborate to fill in the death plan, it will help people leave this life as content as possible which while not something you can put a value on, is priceless.

Author Sarah Dunant contributed last week’s A Point of View on BBC Radio 4.   As I listened to it, I wondered if she had been reading my blogs or had got hold of a My Last Song press release as her point of view is remarkably, and encouragingly, similar to the thesis first articulated by Charles Cowling and myself earlier this year.

Our view comes from our experiences of officiating (Charles’s experiences, not mine) and attending the rapidly increasing funerals which are unique, personal and positive celebrations of life, and my conviction that it is a sham for a person who had few if any religious beliefs in his or her life to be given a religious funeral at which the readings, prayers and hymns have little or no meaning, either in defining the life being celebrated or to the gathered friends and family.

Where Sarah Dunant’s point of view became most interesting was when she said: “Because having got everything that we wanted in life, baby boomers, more than any other generation, are uniquely qualified to address the biggest taboo of all – death… an increasing number of us want to choose when and how we go.”

When discussing  the baby boomers’ funeral final rite she suggests a generational anthem and thought the Sid Vicious version of My Way was suitable.  I see where she’s coming from but think better advice would have been that we choose the songs that mean the most to us as our last songs.

Which is, of course, why I started My Last Song.

Two other encouraging pieces of news today. The first is that the left of centre think tank DEMOS is about to publish a report entitled How Britain Dies. The other is the announcement that the Government is planning to make it easier to allow people to die where they wish, which is normally at home with their loved ones present rather than in impersonal and often lonely hospital wards.

This reinforces the My Last Song view that the very old and terminally ill should be encouraged to write their own death plans, as this will inevitably mean discussing the issues with their family and health professionals and thus reduce the fear of the unknown  and lessen the taboo that still surrounds the subject of our mortality.

A lot is happening in the little niche that we’re calling Farewell Innovations….if you look at the 10 million or so people now over 65 maybe it’s not so little.

Following the British Medical Journal’s website discussion about death and dying, Dr Chris Browne who edits the health and fitness section of My Last Song, has put out a statement saying that doctors treating the very old or terminally ill should encourage them to write their own personal death plans.

“The reluctance of patients and their families to discuss death as the likely outcome of an illness or because of old age makes their end of life medical management more difficult.

“If by filling in a death plan the patient, the family and the appropriate health professionals have a more meaningful discussion, the result is likely to be a more positive approach with obvious benefits for the patient, their loved ones and the medical staff treating them.

“By having a personal death plan, the patient and the family will be more reassured that the time leading up to the final moments will be as comfortable and comforting as possible.

“As a GP I believe that death plans should be encouraged as a way of changing attitudes towards death and dying.”

Within the Lifebox section of My Last Song is a death plan templatewhich allows people to state:

• how much they want to be told about their condition,
• where they want to die,
• the level of medical intervention they want,
• who they want to be responsible for their end of life treatment,
• who they want to visit them when they are dying,
• who should be there when they die,
• what they want to hear, (music, poetry, drama, prayers…),
• what they want to smell (incense, scented candles, oils, flowers…),
• how they want to be touched (hand held, caressed, gentle massage…),
• issues to be cleared up so they have no worries at the end (knowing their loved ones, pets are cared for, their estate is in order, their will is up to date…).

Too many people still die a lonely, impersonal and frightening death which reinforces society’s reluctance to discuss the subject. We only die once so it should be, if possible, the experience we want it to be. Personalised death plans will make that more likely.

Thankfully there is now a concerted move to reduce the taboo surrounding death. The Dying Matters Coalition, of which My Last Song is a member, is spearheading this change of attitude towards dying, death and bereavement.

On 1 July, the General Medical Council published Treatment and Care Towards the End of Life, recommending that death should become an explicit discussion point when patients are likely to die within 12 months.

Then in September, the BMJ’s website published a piece called We’re All Going to Die. Deal with it which highlighted the need for candid discussion about palliative care and end of life medical treatment.

My Last Song supports visitors to address all their end of life issues, put their legal and financial affairs in order, organise their care options and plan their own funerals.

This information can be stored in a secure online Lifebox. Only the Lifebox owners can store and edit the information until they give permission to a close family member to open it, normally towards the end of their lives or on their death.

The General Medical Council has issued guidelines which advise doctors to be more sympathetic to the wishes of the terminally ill they are treating.

One of the more recent articles to appear on My Last Song encourages people to fill out a death plan.  And, helpfully, we have put a Death Plan form in the Vault section of the website.

My Last Song also has advice on Advance decisions, formerly known as Living Wills, to enable people to decide what level of medical intervention they want, or don’t want, when terminally ill. We  recommend the use of the Compassion in Dying Advance decision.

The My Last Song Death Plan enables some interesting and previously ignored decisions to be made when planning for the end. These include:

• Where you want to be for the final days;
• Who you want to care for you;
• What you want to see – the pictures, ornaments, the views;
• What you want to hear – music, poetry, readings;
• What you want to smell – incense, scented candles, oils;
• How you want to be touched – massaged, stroked, hands held.

My Last Song also understands the importance of being free from worries or concerns, and so it has lots of advice on putting your affairs in order, and a section in the Vault where you can list everything you want your executor or close family members to undertake so that you have less to worry about as you face the end.

If you’re blogging and getting to this via tweet, you probably too young to think these issues are important yet. Fair enough, but consider older family members who you can help by talking to them about issues that otherwise are difficult and embarrassing.

You can first encourage them to create their farewell songs, and then move into the more sensitive areas that might otherwise get ignored until it is too late.

After all, we only die once and it should be the ending we want.