Valerie Grove
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To cease upon the midnight with no pain.” Keats, in his Ode to a Nightingale, “half in love with easeful death”, voiced the mortal wish of us all. The Government's proposed end-of-life care strategy to support people if they want to die at home is welcome and long overdue. What people dread and fear most is not death itself, but the pain and humiliation preceding it, in a strange place and among busy strangers.
But how typical of our Anglo-Saxon attitude that, as Alan Johnson, the Health Secretary, told the BBC Today programme yesterday, other media had said that their audiences would find the subject of death “too depressing”.
Nonsense! The programme also featured Maria Gleeson, who had kept her terminally ill 51-year-old husband Paul at home - with advice from the local hospice - to die as he wanted, with his three daughters playing music all around him. It was uplifting to hear.
The majority of the population, those aged between 0 and 64, have lived unscathed by wars or epidemics of killer diseases that once carried people off overnight. Instead, most of us must watch the lingering demise of our nearest and dearest in hospitals. It is not a pretty sight, but it is inescapable. As Julian Barnes wrote in Nothing to be Frightened Of, his book about facing death: “Perhaps a sense of death is like a sense of humour... For me, death is the one appalling fact which defines life; unless you are constantly aware of it, you cannot begin to understand what life is about.”
The mantra of the late Dame Cicely Saunders, founder and guiding spirit of the pioneer hospice, St Joseph's at Sydenham, southeast London, was: “Let the patients speak.” She wanted to give the dying the space “to discover that they are who they are, and to know that it's not too late”. She regarded death by cancer (or anything with its own life sentence) as a great opportunity.
There is much to be said for knowing in advance that you will die in the foreseeable future. Most lives end in a mess of unfinished business - things left unsaid, letters (and wills) unwritten, rifts unhealed, love unexpressed. St Joseph's was the first hospice to offer home care, and most of its patients now do go to die at home, knowing that a rapid response team is on call night and day.
If such care were available everywhere, the euthanasia debate would simply die out. Both the hospice movement and the Voluntary Euthanasia Society share a single chief concern - the relief of suffering and the importance of dignity in death. Since palliative care became a recognised medical speciality in 1987, hospices are the next best thing to home. No gloom, no groaning inmates in rows of beds, but instead light and blithe calm.
Birth and death are our only universal experiences, but we accord the beginning of life far greater consideration than its end. The expectant mother's rights and preferences are discussed with her in advance. But the terminal patient needs just as much forethought. One of Mr Johnson's proposals is that patients should “let their wishes be known in advance”. In a hospice or at home, with pain and other symptoms under control, families can supply what is wanted - a birthday celebration, or a visit from a dog or cat.
One outpatient I met at St Joseph's, pouring champagne all round, said that she had written the poem to be read at her funeral. “I shall have the fourth movement from Mahler's Fifth, from the film Death in Venice, and I shall go out to the grand march from Aïda.”
I was reminded of Annie Lindsell, the 47-year-old motor neuron disease sufferer, who went to the High Court in 1997 to win the right to die when she chose, at home, looking out at her garden, surrounded by her friends and cats, with champagne and the Liebestod from Tristan und Isolde “at full blast”.
It will be a good thing if we see an end to the traditional British way of dealing with death - to shy away from it, accepting the end with grim stoicism. Our Victorian mawkishness about death, and the love of deathbed scenes in literature, are long outgrown. Americans have now reached the state of mind where people think that they can live for ever, so widows are prone to outrage and disbelief: Joan Didion's remarkable book The Year of Magical Thinking, about the death of her husband and her daughter's illness, - now rivetingly dramatised, with Vanessa Redgrave, at the National Theatre - was the apotheosis of this view. But Didion's husband, John Gregory Dunne, died at home, waiting for supper. Sudden death, without painful anticipation, is as good as death gets - for the corpse.
For the about-to-be-bereaved, we know that keeping dying relatives at home is the widely preferred solution, backed by advice on palliative care. The hospice movement, and excellent organisations such as Marie Curie and Macmillan Nurses, are widely appreciated for what they do - but it is anachronistic to expect them to depend so heavily on charity and volunteers. Can we afford universal palliative care for the dying? In our ageing society, we must. The way we deal with death is a reflection of the value that we place on human life.
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This article changed my mind about death. Brilliant.
Andrew , Kingston, Jamaica
As long as we can build in safeguards to ensure that others cannot benefit from a death, and that (say) 2 competent practitioners confirm there is no hope of even a viable,partial recovery then euthenasia should be 100% accepted.
My wife and I wrote living wills many years ago, with that in mind
Allan Robertson, San Miguel de Abona, Spain
It wd. be nice to be able to choose the time & manner of one's passing from this world. But surely what is more important is to accept that one has led a fufilled life, not the mechanics of one's death.
ian cheese, london, uk
Maybe we should stop trying to convince people that death is unavoidable. It is a part of life, just as a finale is part of a stage show. Life isn't complete without it and as a culture we need to stop hiding from that without becoming morbid in the process.
KR, Stockport,
The euthanasia question is separate; a choice of when to die, rather than where. If I decide my quality of life is unbearable I should be allowed to make the decision to end it. I had to watch a relative die, with good palliative care but not a scrap of dignity left him.
Trevor, Burwell, UK
I just went through the pain of the death of my Mum. It was a struggle for the last several weeks, never leaving her side at their home, with our local Hospice supporting our efforts. Being a witness to lingering and suffering, even with pain medication, was quite frustrating, and saddening.
Jon, Colorado, USA
This article talks of adults being given the power to die at home I had to fight for my son to be allowed to die at home in 2000; he was only 9 years old and had a metabolic condition and was frightened when in hospital. People need to acknowledge that it is not only adults that die.
Hillary Vallé, Cardiff, Wales
Dear Ms Grove
The name of the hospice started by Dame Cicely is St Christopher's, not St Joseph's.
Sincerely
Brenda Ferns
Administrator
Cicely Saunders International.
Brenda Ferns, London, UK
My advice to the British people would be to have a complete debate, by which I mean involve as many people/representatives as you can. We are struggling with the gray areas in the Netherlands, with queries such as the definition of endless suffering etc. We struggle to find a consensus.
Erik, the Hague, Netherlands
Some cultures celebrate death - the Aztecs certainly did. Perhaps the traditional mourning of a passed or passing loved one is more fitting for the British climate?
kevin, Lincoln, UK
"What people dread and fear most is not death itself, but the pain and humiliation preceding it, in a strange place and among busy strangers."
Wow - that's rather a large statement to make without any supporting evidence. I would have thought that death itself is the greater fear.
Toby, New York, USA
Euthanasia is still a very controversial subject. Should we accept it as someone's right to end one's life, or survive like a vegetable, like "dead man walking" Hinduism and even Zen mythology treats a dreadful occasion like "death" as a celebration.It teaches to elevate and go beyond mortal life???
sanjeev dheer, New Delhi, India
There must be an option for aged people with terminal, painful, and distressing illnesses to opt for euthanasia. It must be made legal and facilities available on demand. At the moment it is not legal, but if and when I need to do it, do you think I will heed the law?
M Wilson, Bidache, france
Whatever happened to the work of the great Cicely Saunders?!! As a retired Hospice Director I am appalled that more was not made in your story of the wonderful tradition that we all thought was the norm in Great Britain.
Lee Stein, Boynton Beach, United States