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.

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.

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.