A touching and important blog deserves close reading, though have a tissue near by.

It’s from Dr Kimberly Manning, who works at Grady Memorial Hospital, Atlanta Georgia. In it she describes how and why the decision was made not to prolong unnecessarily the life of one Mrs Cafferty and how it was accepted by her family, there at the hospital by the side of the dying woman.

When challenged by a colleague why the medical team shouldn’t do all they could to keep this patient alive, Dr Manning replied: “Mrs Cafferty is dying.”

The blog continues: “I stated the facts and left it at that. In silence, it set in. I could see their wheels turning. Imagining those same things that I was thinking like, Why are we sticking her with needles and pricking her fingers for blood sugars when those things hurt? Why are we not focusing on keeping her as comfortable as possible?

“We entered her room that morning and…discussed these things with the family. By this point, Mrs Cafferty was lapsing in and out of consciousness, so this conversation took place with her children. And no, this was not the first time that the subject of end-of-life care had been brought up with them, but it was the first time they were ready to accept what was happening.

“ “Let her go in peace,” the eldest daughter finally said. “This is our decision. Mama would not want us to keep her alive this way. Please just keep her comfortable.” The rest of the family nodded in sombre agreement.”

Why this is important is that it describes a changing of a mindset that assumes the medical profession should do all it can to keep someone alive regardless of the diminution of quality of that life, to one where the futility of such intervention leads to its withdrawal. And so, with the informed consent of the family, medical treatment is ended so that death can come naturally, with no more tubes, chemicals, machines or doctors’ valuable time used to delay the inevitable.

In short, society and the medical profession are beginning to believe that while the prolonging of life is accepted as a medical absolute, to prolong death is a futile, cruel and costly perversion.

To make this changing view of medical practice more acceptable, it’s essential that people have their individual death plans, filled in following discussion by the ailing patient, their close family, their medical professionals and if appropriate a minister of religion.

My Last Song has created a holistic death plan that covers the medical, physical, emotional, spiritual and practical issues, even down to who looks after the pets. It includes considerations such as the aromas the patient wants to smell, music to hear, people to be present, where the patient wants to end their life and, of course, the level of medical intervention.

Its aim is to make the end of life as comfortable and comforting as possible.

The easy to complete template can be found in the Lifebox section of My Last Song. Once filled in, it can be securely stored, updated and accessed by selected loved ones so the end of life experienced by the dying will be one supported by those like Dr Manning who have the quality of their patients’ lives foremost in their minds.

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.

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.

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.

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.