With society now obsessed by the desire to prolong life, Elizabeth Grice asks if we have lost the art of dying well and examines practical steps to change our attitudes
Death got a rave review the other day. That doesn’t happen often. Just off one of London’s traffic thoroughfares, there was a profound little exhibition of photographs taken of people before and immediately after they died.
Twenty-four of them, old and young, were recorded by a German photographer, Walter Schels, who was terrified of death and wanted to confront it through his art. The words alongside the portraits reflected the anger, fear, courage or resignation his sitters felt at the imminence of their non-being. What set this poignant group apart was the knowledge that death was not far off - very different from knowing that we are mortal.
But their friends and relatives were engaged in a familiar, sad pretence: “You’ll soon be feeling better”, “You’ll be home soon” and so on. So, to their astonishment, Schels and his partner, Beate Lakotta became their confidantes. With no platitudes to offer and no false comfort, they helped to take the isolation out of death for these people they hardly knew. “I know now how important it is to be there and not to be afraid of asking questions and of listening to the answers,” said Lakotta.
The elusive concept of a “good” death has become a hot topic, inspired by the leave-takings of two great communicators, the Irish writer Nuala O’Faolain and the American computer science lecturer Randy Pausch.
It is also the subject of a new book, The Art of Dying, a nod to the medieval texts Ars Moriendi that set out protocols for dying. The authors, Dr Peter and Elizabeth Fenwick, argue that, obsessed with prolonging life, we have lost the habit of helping people to die a good death. “Hi-tech around the deathbed is sometimes more concerned with the feelgood factor of the relatives and the medical profession, who need to feel they have done everything they can, than with the peace and comfort of the dying,” they say.
We are very good at making sure that when people die they are as comfortable and pain-free as possible, they add, but not so good at catering for, and teaching others to care for, the spiritual needs of the dying. So it is time for those dying and those around them to think about where and how they want to die.
Nuala O’Faolain declined any temporary reprieve chemotherapy might offer and decided upon the best way of spending her last months. Suffering from two brain tumours and lung and liver cancer, she embarked on a journey that wrested meaning and even joy by revisiting some of her favourite places.
At the Berlin Opera, she heard Verdi’s Don Carlos. She stayed at the best hotel in Paris (yet, out of habit, economised on breakfast). With friends, she visited Madrid and Sicily. And she moved back to her native Ireland, where she died on May 9 this year, aged 68, surrounded by family and friends - the archetypal good death.
“In our culture, that is a great privilege,” said a close friend, Luke Dodd. “We were all singing and talking. I am happy really, because she had the death she wanted in the end.”
Professor Randy Pausch, diagnosed with terminal pancreatic cancer at 46, exploited the knowledge of his coming death in a remarkable way. He chose to do the thing he does best: to lecture.
But The Last Lecture (now a book of the same name) wasn’t about dying. It was about the importance of overcoming obstacles, of nurturing the dreams of others and seizing the moment. Four hundred people turned up to the lecture, including a columnist for the Wall St Journal. Within days, the column and video swept across the web. More than six million people have viewed it online. Pausch, the self-styled dying showman, crafted his last appearance and brought down the curtain in his own way. Content to be in the wings now, he is still alive, but very weak.
While Pausch and O’Faolain’s experiences may be unusual, their attitude to death is one that should be borne in mind.
“Our fear of death and love of life,” say the Fenwicks, “mean that we seldom prepare either for death itself or the process of dying. So although all of us will die, hardly anyone is prepared to ‘die right’?.”
By “right”, they mean pain-free and in an untroubled frame of mind. A “good death”, they say, is the death a person wanted - whether surrounded by family at home, in a hospice with professional carers, or even alone. “Dying in one’s sleep is the ideal death as far as most people are concerned.”
But 67 per cent of people die in hospital among staff untrained and unequipped to answer their emotional, social and spiritual needs.
Peter Fenwick is a neuro-psychiatrist. His research into end-of-life phenomena convinces him that we think in too linear a way about life and death. “With the secularisation and the medicalisation of death. We have lost the idea that death is a clear and natural process, not a switching off,” he says. “We realise the value of a ‘birth companion’ during childbirth. Perhaps we should now consider that the ‘death companion’ may have an equally important part to play.”
Such a companion is someone who is there, not who necessarily does anything. In practical terms, this may mean making sure surroundings are peaceful and cheerful. Even when someone is apparently unconscious they may be able to hear or feel more than we know. “Holding their hands and talking to them may give more comfort than we realise,” he says.
The Fenwicks add that one of the most impenetrable barriers to a “good death” is unfinished business. They say that reconciliation is a necessity. It is important that everyone has the opportunity to say “I’m sorry” or “I forgive you” or “I love you”. This is not only so that the dying person can let go in peace but also so that those left behind can have a guilt-free parting.
They discovered in interviews with hospice carers that many residents instinctively seemed to know they were nearing the end; people also seemed able to postpone their departure until they had a chance to say goodbye. “Others choose a moment when they are alone… it’s worth remembering that this may be their choice.”
One of the biggest questions that relatives face is whether one should talk about death to the dying. The Fenwicks advise taking your cue from them - but try to make it easy for the dying if you do so, and do not go to great lengths to avoid the issues.
Don’t, they warn, be so careful not to say the wrong thing that you leave the right thing unsaid. Marie de Hennezel, a French psychiatrist, says it is sometimes the relatives who have to make a conscious effort to let go. One ward sister told the couple about a patient who had been ill for a long time. “One day when his mum left his bedside he looked at me and said, ‘Is it OK if I go now?’ I sat with him while he died.”
A particularly fraught issue may be what to tell children. While nothing can make the death of a parent easy, failure to prepare a child for bereavement under the guise of protecting them could well make the situation worse.
The important thing is not to leave those who are dying feeling isolated. As friends or family the temptation is to share Dylan Thomas’s view that we should “rage, rage against the dying of the light”. But the dying may be more philosophical.
Elizabeth Kübler-Ross, the Swiss psychiatrist who wrote the ground-breaking book On Death and Dying, defined the five stages that the dying passed through before coming to terms with death: denial, anger, bargaining, depression and finally acceptance.
As one grows older, say the Fenwicks, the need to talk about old times and search out old friends who have played an important part in your life can be thought of as rounding off, preparatory behaviours for a good death.
Finally, the book details several examples of near-death and end-of-life experiences; the Fenwicks say that those who have undergone one of these lose their fear of death. Studies of those who have had a close brush with death, such as an acute cardiac arrest, show the same loss of fear. “Whatever it is they experience seems to lead to tranquillity in the face of death… but perhaps the most important consequence is that it affects the way we live. It makes them value life without clinging to it, appreciate each day as if it were their last.”
By accepting and living in the now, the Fenwicks believe our attitude towards life and death can be transformed. And we, the survivors, must not fail to help the dying because of our own fear of death. The individual bravery of a Nuala O’Faolain or a Randy Pausch establishes another kind of healing ritual: that of shared experience. Even the people in the Schels portraits did it. They wanted to pass on to others something only they knew.
“They weren’t pretending anything any more,” said Schels movingly. “They had lost that need. When you’re facing the end, everything that’s not real is stripped away. You’re the most real you’ll ever be.”
- ‘The Art of Dying’ by Peter and Elizabeth Fenwick (Continuum) is available from Telegraph Books for £9.99 + 99p p&p and ‘The Last Lecture’ by Randy Pausch (Hodder & Stoughton) is available from Telegraph Books for £11.99 + 99p p&p. To order, call 0870 428 4112 or go to books.telegraph.co.uk
For those dying
1 Forgive others and seek their forgiveness; heal broken relationships, however late in the day
2 Search out old friends with whom you have lost touch
3 Value life without clinging to it, and live each day as if it were your last
4 Die where you would most like to - whether at home or in a hospice; alone or surrounded by family
5 Trust your instincts; many carers say that patients know when their end is near
For relatives and friends
1 Talk to the dying about death if they wish; don’t go to great lengths to avoid the issue
2 Make an effort to let go, giving the dying permission to leave in peace
3 Holding hands and talking can give more comfort than you think
4 Don’t be so careful not to say the wrong thing that you leave the right thing unsaid
5 Don’t shield children: prepare them for a death, and allow them to say a final goodbye
