There was a lot of good sense talked during yesterday’s Westminster Hall end of life care debate, on which the government is consulting at the moment, and in particular when discussing the Liverpool Care Pathway (LCP).

The LCP is designed to manage the withdrawal of unnecessary treatment given to dying patients to relieve suffering, and has been inaccurately reported in the Daily Mail (which seems to enjoy making it readers as anxious as possible) as a state sponsored way of killing the old.

Glyn Davies MP, who sponsored the debate, criticised such poorly informed criticism, without naming the Daily Mail, as shouting ‘Fire’ in a crowded theatre, and said that to abandon the LCP was like “tearing up the Highway Code because there were some bad drivers.”

Sir Tony Baldry MP also spoke sensibly when he said that the NHS wasn’t failing because people died, but failed when they didn’t die well. He stressed the need for improvements in the way medical professionals communicated with dying patients and their families.

Credit must also go to the Shadow Health Secretary Liz Kendall who didn’t oppose this welcome development to the management of end of life but pointed out the LCP was only as good as the teams that used it.

The debate ended with the Health Minister Norman Lamb stating the government’s aim to make all patients’ end of life care as pain free and dignified as possible, and that it was totally unacceptable that patients were put on the Pathway without any notification of the patient’s family.

A vital and as yet overlooked concomitant to the Liverpool Care Pathway is the benefits of the terminally ill and ailing elderly having their own personal death plan, rather as mum’s-to-be have birth plans. Death, after all, is as inevitable as birth.

Filling in a death plan means that the end of life has to be discussed, rather than ignored because it’s awkward, upsetting or embarrassing. And the discussion will inevitably include loved ones, medical professionals and, if appropriate, ministers of religion.

Most importantly, an individual’s death plan will be a properly communicated record which doctors and others involved will, if appropriate, follow so that the patient’s death is as comfortable and comforting as possible. Even if some of the end of life wishes expressed in the death plan are unrealistic, at least the creation of the plan facilitates discussion between the patient, the patient’s family and the those providing the end of life medical care.

My Last Song has created a holistic death plan template which not only addresses medical issues but also other aspects which affect the quality of the end of life experience, such as who the patient wishes to be present, where they want to die, the music they want to hear, the aromas they want to smell, pictures they want to see and also practical matters so they don’t worry about, as an example, who will look after their pets.

We hope the government will suggest the adoption of personal end of life death plans and acknowledges that a good death is more than just good medical care.

Sir Ian Botham was understandably emotional on Gary Richardson’s Sportsweek on BBC Radio 5, recalling the deaths of Tony Greig and Christopher Martin-Jenkins in the space of a few days.

Both will be terribly missed for similar reasons: their passionate love of cricket, their ability as commentators, their instantly recognisable voices, traditional values, senses of humour, strong personalities and personal and professional achievements.

There’s no need to go into details of their lives here, for there have been excellent obituaries. CMJ, or the Major as his colleagues called him, was chief cricket correspondent for the Telegraph and its obituary is a model. The Guardian’s obituary of Tony Greig is also excellent.

Both died from complications caused by cancer, both at tragically early ages,  Greig at 66, CMJ at 67. Despite the advances in medical research and healthier lifestyles – Tony Greig and CMJ exercised, played golf and probably ate well – cancer is still an effective killer.  So too are other illnesses such as heart disease, diabetes and the increasingly common dementia in its various forms.

And then there are the random acts of stupidity, violence, nature and accident that take lives too early and with such shocking and devastating effect.

Yet so many people seem to deny that death will one day or another come to them… ‘who wants to think about their death?’ is still a common response when My Last Song is talked about.

Continue with this view if you want your final event to be dreary, unmemorable, distressing for your loved ones and inappropriate to your life and beliefs.

If on the other hand, you want to take responsibility for how you leave this world, to be remembered the way you want to be remembered, to have your life celebrated, to reduce the grief and anxiety felt by your friends and family then visit My Last Song to help plan your funeral and store your memories in your Lifebox so that future generations will know the real you. For all we leave when we go are our memories.

An excellent guest blog on the importance of sensitive and trusting nursing from US-based Melanie Bowen.

Chronic illness can be very difficult to endure for patients and their families. During times of greatest need, sufferers of life-threatening diseases require all the support they can get from healthcare providers, family and friends.
Since patients will spend most of their time accompanied by a nurse in a medical facility or in-home nurse while at home, the strength of the bond that forms between the two could be the key factor in determining recovery rate and potential.
Even if recovery is impossible, good support can bring calmness, acceptance, and closure to the afflicted.

Why is emotional support so crucial to the recovery of patients?

As human beings, we are emotional beings. Our fondness for one another is based on a combination of similarity, frequency of interaction, sentimental behaviour, and emotional and intimate connections. The more ‘proof’ that a person receives from another individual to show that they care, the more attached he or she becomes to the supporter.
Humans need to have confirmation and assurance of their relationships with others to feel secure. Without actions, words mean nothing.
Nurses who show genuine desire to help and befriend patients are the ones that do their jobs the best.

How can a strong relationship between nurse and patient affect recovery?

From liver failure and brain tumours to pleural mesothelioma and malignant melanoma, a close bond between caregiver and patient can speed up recovery time and improve the chances of survival regardless of how grim the circumstances.
First, a positive and honest relationship between a nurse and patient gives the patient happiness. Knowing that somebody trustworthy is always there to look out for them can be a very comforting thought that reduces massive amounts of stress and anxiety.
Fear of death cannot be avoided, but strong physical and emotional support can brush aside many of those constant worry that add to stress and anquish.
Additionally, many chronic patients do not have any family or friends to visit them during times when they need the most love. Caring nurses can replace those missing loved ones to provide the same important emotional support that helps the afflicted fight on despite the overwhelming odds.
Second, caring nurses have intimate knowledge of their patients. This is a huge advantage when providing medical assistance that lessens the strain and pain.
Take the example of 26-year-old breast cancer patient Theresa, whose nurse, Jessica, was her caregiver and also became her best friend. Having been by Theresa’s side for many years, Jessica knew Theresa’s medical history. She gave Theresa candy before the drugs that always initiated her gag reflex, to use a longer needle on her, and to check her bowels if a physician doesn’t request an enzyme test.
By contrast, patients who have to transition frequently between nurses don’t have the beneficial personal connection. New nurses aren’t familiar with how the patient has things done, and they don’t have the personal bond to make them care for the patient like a true friend.
Lack of knowledge about and lack genuine concern for a patient are two things that could hinder recovery progress and contribute to worsening health.
Finally, a significant personal bond between nurse and patient give nurses more reason to give their all in providing for the sick. After spending so much time together, the patient is no longer just a stranger but a good friend. As a true friend, a nurse will have personal reasons along with a career obligation to provide the best care possible.

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.

There’s probably no harder conversation to have with anyone than to tell them they are dying, or that they should consider their death. Indeed so difficult do many people find it that it’s never broached. The reluctance is understandable, discussing a person’s death is likely to cause upset or raise suspicions.

So we take the easy way out, and the end of life decisions are then made for the dying patient rather than by the dying person. Hence the medical professionals will assume that the family expect medical intervention.

Family members too will take decisions, usually confirming the doctor’s view that they want prolonged medical intervention so their loved one lives longer.  Some will decide they haven’t the ability, facilities or inclination to care for a dying loved one and so the person whose life has run its course is left to suffer unnecessarily prolonged intervention in a frightening and often lonely hospital.

Very few medical professionals or close loved ones will think about the sensory elements of the dying person’s end of life experience. Where do they want to die? Who do they wish to be present, or not present? What do they want to see – photos of loved ones, lovely views?  What smells would they like to experience as their life ends? Do they want their hands held, to be caressed, to be massaged?

They will, of course, want to be rid of concerns, so issues such as their funeral wishes, their probate, and the care of their property and pets, should be dealt with in advance so they can ‘die in peace’.

The Royal College of Physicians’ report that recommends that doctors are regularly trained on communicating end of life treatment with their patients is clearly limited to their role in providing suitable end of life treatment. Quite rightly, they see the need for planning for the death well in advance in the hope that patient and doctor have a meaningful discussion. The palliative care, which should extend to the spiritual and physical, will be limited to the medical.

My Last Song believes that by having a personalised death plan, the medical decisions and the existential decisions can be discussed and agreed at the same time, with the involvement of the patient, the medical professionals, loved ones and if appropriate ministers of religion.  We’ve created a death plan template to make it as easy as possible to fill in, edit and save.

The result should be a more comfortable and comforting end of life experience, and if this is the likely outcome, then the discussion is less difficult to initiate, less likely to be misconstrued.

A survey on people’s end of life wishes carried out by the California Health Care Foundation in late 2011 came up with the following findings:

67%: Making sure family is not burdened financially by my care;
66%: Being comfortable and without pain;
61%: Being at peace spiritually;
60%: Making sure family is not burdened by tough decisions about my care;
60%: Having loved ones around me;
58%: Being able to pay for the care I need;
57%: Making sure my wishes for medical care are followed;
55%: Not feeling alone;
44%: Having doctors and nurses who will respect my cultural beliefs and values;
36%: Living as long as possible;
33%: Being at home;
32%: Having a close relationship with my doctor.

The Foundation, in summarising the findings, says that there’s “a disconnect between what Californians want (a natural death at home) and reality.” The various poll answers, available in the pdf, prove this conclusively.

What’s true for Californians is true for older people in this country too, and in most developed nations facing the same issues of increasing numbers of old people, the taboo around discussing dying and death, and medical advances which make prolonging life in hospital more likely than a natural death at home.

So, how to make the end of life experience less a ‘disconnect’ with what people want and more a positive, comfortable and comforting experience?

Well, encouraging ailing older people and the terminally ill to have a personal death plan would be a great step forward. It would enable the patient, their loved ones, their medical professionals and, if appropriate, their ministers of faith, to discuss openly and honestly the end of life experience the patient wants, and if at all possible, deliver these wishes.

We have created a holistic death plan that covers the medical, physical, emotional, spiritual and practical issues, even down to who looks after the pets. Less prosaic are 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.

If the adoption of death plans became widespread, far more people would have the end of life experience they, and their loved ones, want.

To make it easy, there’s a simple to complete template in the Lifebox section of My Last Song. Once filled in, in can be securely stored, updated and accessed by selected loved ones.

The more people who have their death plans, the more seriously they will be taken by the medical profession.

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.

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.

In an attempt to get publicity for its worthwhile Great Daffodil Appeal, Marie Curie Cancer Care published the findings of a survey of where people would like to die.

These findings were picked up by the Dying Matters Coalition which, knowing the interests of the tabloid news desks (and probably its members also), headlined the piece they wrote on their website: ‘Most men would like to die having sex’.

Why let the facts get in the way of a good story…only one in five men said they would like to spend their final moments engaging in a spot of hanky panky.

More important than the imprecise description of research statistics is the good work the Dying Matters Coalition is doing in getting death talked about.  In this case, the vital issue of where people want to die instead of hospitals which is where most people will experience a possibly lonely and frightening end.

Dying Matters put this item on their Facebook page which resulted in some interesting comments. One woman said she could understand why ‘some blokes would want to go while they’re coming’.

Another reminded us of Peter Sellers’ comment on having a heart attack while making love to Britt Ekland: ‘I didn’t know whether I was coming or going.’

So well done Marie Curie and Dying Matters. Your efforts have resulted in a witty discussion about sex and death…the final taboos are gradually being defeated, and that can only be a good thing.