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The Tablet

9 May 2009
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The Pastoral Review

Gentle into that good night

Sue Gaisford

- Supporters of euthanasia claim that terminally ill people often die in agony, but hospice managers promise a pain-free death

WHEN I was 18, I went with my sister to see our uncle in a place that was then called St Joseph's Hospice for the Dying, in east London. It's an uncompromising name and we were nervous, not relishing the prospect of witnessing terrible terminal agonies at close quarters. But we were very fond of him and we braved it.

It was astonishing. The minute we were inside our fear evaporated. It was full of people who did indeed look very ill but the atmosphere was relaxed, even cheerful, and the staff were treating the patients with an easy respect, like the old friends many of them were. Our uncle was a priest and the place had been enlivened the previous day by the arrival of a resplendent bishop who had raised him to the status of canon, to his delight.

We came away laughing at his unquenchable optimism. He was a great correspondent and so comfortable did he feel in that place that he had ordered writing paper headed with his current address - although, it did leave out the words "for the Dying".

St Joseph's later followed my uncle's lead in omitting those words. It was a sensible move. We might once have been required to contemplate the Four Last Things but who now dwells regularly on Death, Judgement, Hell and Heaven? If not exactly taboo, they are seldom mentioned. And yet even the word "hospice" is freighted with mortality. There is a perception that many may enter, but few emerge.

All the same, there is comfort in the thought that at least hospices know how to handle the business of dying, to make it less terrifying. That presumption is one of the reasons why reports of a recent court case were so disturbing. As the result of a failed suicide pact that had left him, reluctantly, alive, Brian Blackburn had killed his wife, Margaret. The 62-year-old retired policeman from Ash in Surrey said that Margaret, also 62, had begged him to do it. It was "the most loving thing I could do for her". A post-mortem discovered advanced stomach cancer but "she did not seek medical help because she had worked in a hospice". For those who advocate euthanasia this proved a useful argument: if a woman in the know preferred assisted suicide to palliative care, then clearly it should be legalised.

The sad story of the Blackburns, however, proves shaky ground on which to base such a radical change. Who knows what caused her to ask her husband to end her life? It might have been the pain of her undiagnosed, untreated cancer, dread of surgery, fear of a lingering death, the grief associated with a long farewell - we cannot tell. But of one thing we may be certain: had she been admitted to a good hospice, she would not have died in pain.

This is a fact. Maxine Clist is the manager of St Augustine's nursing home, Hastings, which is attached to, and effectively part of, St Michael's Hospice. A strong woman with 14 years of experience, she bangs her fist on the table to emphasise the point. Never has anybody in her care died in pain. "Never once", she insists. "It is the promise we make to all our patients, and we keep it."

Nor are patients simply drugged into a comatose state. Denise Mulligan, manager of St Michael's, enlarges on this: "We actually use less morphine than we did 10 years ago", she says, "but we use co-analgesics with it. It has become such an exact science. The really important thing is titration - getting the dose right - so that pain is relieved but consciousness preserved. Morphine, anyway, is not always the answer - bone and nerve pain, for example, are impervious to it - but we have other highly effective drugs for them."

On the outskirts of Tunbridge Wells that morning, John Ashelford, chief executive of the Hospice in the Weald, says much the same, and stresses that accurate diagnosis of the cause of pain is vital. And he adds that terminal in-patient care is but a fraction of hospice work. "Half our patients come in for assessment of their needs and for sorting out their pain relief - and then they go home again. Others come in for day therapy, and others use the hospice-at-home service, where staff go to patients' houses and work alongside GPs and district nurses to allow people to die with dignity in their own homes."

That is clearly what a lot of terminally ill people would prefer, but for some it is impossible - if they live alone, for example, or if the family can't handle the last stages. An average stay in the Weald hospice is 12 days. It is a beautiful, custom-built refuge, designed like an oast-house, full of light and hope. French windows lead from many of the rooms into the lovely garden, where patients can be wheeled out into the summer sunshine.

A teaching hospice, it treats roughly 350 patients at any one time. It has 100 staff, its own medical director, consultant and registrar as well as counsellors, chaplains and therapists. These are supported by 650 volunteers, who man the shops, the caf? and the reception desk, act as ward clerks or gardeners, and turn their hands to whatever is needed.

Hospices provoke contrary emotions. For everyone who is scared by the very thought of them, there are a dozen who have seen what they offer and who want to help. Fundraising is vital. Despite all its volunteers, the Weald needs a staggering ?3m. a year just to keep going, and even then it cannot afford to open all its beds. Government funding covers only 10 per cent of the costs and the rest comes from public generosity.

It's a perilous business. To mangle metaphors, John Ashelford runs a very tight ship while walking a tightrope. He never knows whether or not the money will come in. At times, he has only enough in hand for another seven weeks. Listening to him talk, it really does seem absurd that more public money is not available. Quite apart from the excellence of the care offered, these places save the NHS time and money by treating people who might otherwise be lying in acute hospital beds. Sometimes, says Mr Ashelford, such patients arrive by ambulance from hospitals, in a terrible state. Their families are often amazed to see them sitting up and smiling within a day or two.

How do they achieve this? Chemical intervention is certainly not the whole answer. Both these hospices believe firmly in allowing the patient as much autonomy as possible, and in helping them to live positively right to the end. Both offer a complete package of holistic care - from breaking bad news to bereavement counselling - and, along the way, there are plenty of complementary therapies to give them comfort, be it, reflexology, aromatherapy, acupuncture or massage. Spiritual help, too, is highly valued and mutually rewarding: the chaplains speak of the tremendous privilege of administering the sacraments in such circumstances.

One thing many patients have in common is a sense of confusion, of wondering what their lives have been about. At the Weald, volunteers help even very elderly people to use an amazing computer program called Rosetta Life which allows them to create a record of their lives, in the form of an illustrated book or a DVD, to leave to their children. At St Michael's, they are always prepared to go the extra mile. As we were talking, a nurse popped in to ask if the solicitor due to be admitted the next day would be allowed to bring his desk. Of course he would. He may be 103 and none too well, but his desk will come in with him.

That's not surprising. In one room I saw the back of a grey head, sitting in an armchair watching an old film. On the wall beside the television were startling pictures of naked male torsos. "It's what makes her happy", smiled Maxine. By the same token, many patients have animals: only a canary at the moment, but once they nearly had a far bigger beast to whom a very sick patient wanted to say goodbye. Only foot-and-mouth restrictions, at the very last minute, prevented the arrival of her own pet llama.

I found myself wondering how the staff cope, when they make such huge commitments to people who will, inevitably, soon be dead. "People think we get hardened to it", said Denise, "but we don't. You couldn't do this job properly if you were hard: we support each other a great deal, but we do get very tired and we don't always cope well. Sometimes you hit the red wine! More often, I just go into the chapel for a while, and cry." When someone dies with whom several staff feel great affinity - a young mother, perhaps, or somebody their own age - Maxine closes that room for a few days, so that the nurses can get used to the loss, before opening it to another patient.

You have to admire these people, but you also soon realise how great are the rewards of the job. Many patients have never really known the privilege of being valued, listened to, given time - it can make all the difference to the end of a life, particularly when their intense and real pain is largely emotional. One last story of Maxine's illustrates this. She was nursing a man who had served in the RAF during the war. A squadron leader, he had watched in horror as all his men were shot down. He was the only survivor, staggering on under a crushing weight of guilt. He had spoken to nobody about it until he began to tell Maxine. Gradually the story came out, including the horrible fact that whenever this man fell asleep he dreamed the same dream: that he was ascending a staircase, hopefully, at the top of which was a door. When he opened it, he was confronted by a wall of flame.

Maxine was called in the night to his room. When she went in he was very agitated. He had been asleep, he told her, and had had the dream. But this time, when he reached the top, the doors revealed a clear blue sky, and birdsong. After that, he needed no more than a simple dose of paracetamol until, within a day or two, he died - peacefully and totally free of pain.