Giving life to the dying

A wheelchair suggests the 82 years are catching up on her

A wheelchair suggests the 82 years are catching up on her. But the gimlet eyes are sharper than ever, perceptively analysing the comings and goings of Dublin Castle. The serene and smiling face has not changed in the 10 years since we last met. Nor have the directness of manner and the impatience with inefficiency, attributes which have enabled this formidable Dame of the British Empire to achieve so much in her lifetime.

Dame Cecily Saunders is in Dublin to deliver the keynote address at an international palliative care conference. "Bas Solais - Death with Illumination", a theme inspired by the illumination of the neolithic burial chamber at Newgrange, has attracted a worldwide audience of experienced professionals.

As the last strains of Anuna's brand of Celtic spirituality filter through the auditorium, "The Dame" begins her talk. If anyone is qualified to talk about "Lessons in Living from the Dying", then she is.

Best known as the founder in 1967 of St Christopher's Hospice in Sydenham, London, Dame Cecily is widely regarded as the mother of palliative care. Her achievement in transforming terminal care around the world has resulted in a collection of more than 20 honorary doctorates. She is one of only 24 holders of the Order of Merit at any given time. "There will be a new one appointed soon, after John Gielgud's death," she confides later.

READ MORE

Dame Cecily has had three separate careers. She worked as a lady almoner (the pre-war equivalent of a social worker), trained as a nurse during the second World War and finally she took a medical degree at the age of 33. The decision to become a mature medical student came on the advice of a senior consultant; he had seen her zeal for changing pain control in cancer patients from an "on demand" system to one where analgesia would be given on a regular four or six-hourly prescription. "It is the only way you will bring about change," she was told. "They won't listen to you unless you are a doctor."

As a nurse she realised medicine did not recognise the value of preventing pain. It used various cocktails of drugs to alleviate pain after it was present for some hours. The unfortunate patient had to earn pain relief.

Dame Cecily recalls one of her first cancer patients, for whom the change worked wonders. She quotes from Mrs H's story. "I had a vice-like pain gripping my spine - I was pouring sweat and could not talk. The biggest difference with regular medication is I feel so calm. I was really depressed with black thoughts in the past. These are now gone."

Another key influence was a Polish Jew, David Tasma. Alone in London, he was dying at 40. Through conversations with her, Tasma was grateful for "the chance to find out who I am". Dame Cecily says quietly that it was her many visits to him that led to the founding principles of the hospice. "It is because of him that openness, mind matching with heart and the freedom of spirit, were built into my vision since 1948. They have been there ever since."

In both of these stories, we see Dame Cecily's fundamental raison d'etre: to achieve symptom control for her patients, allowing them the time and space to live the remainder of their lives.

How would she like to die herself? "I'd rather die of cancer than drop dead from a heart attack. Cancer would give me time to say thanks and to say sorry." She has seen too many reconciliations and resolutions during terminal illness not to value the time and space which good palliative care can give.

Does she prefer the term palliative to terminal? She smiles and says that the first home-care patient she looked after in 1969 told her firmly, "I'm not going to terminate, Dr Saunders, I'm going to die!"

Dame Cecily is a firm advocate of telling the dying patient the truth. Has it got easier with time and her vast experience? "If it isn't hard to tell the patient then you are not committing to them for the rest of their journey," she replies definitely. But she is also conscious of what she calls "the meeting of minds between doctor and patient". In other words, being sensitive to the right moment, not force-feeding information to the patient, letting them take the lead.

She also believes in the value of "constructive denial". There are patients who never verbally acknowledge their impending demise, but who nonetheless "know" they are dying. "There are non-verbal moments," she acknowledges, "when the patient knows, the doctor knows the patients knows."

SHE feels that people who are dying experience "a doppler-like effect of coming to the end". Similar to the way we move fast in a crisis, those who are near the end of their lives are very aware of their priorities. "Whoever said they wanted to spend more time in the office?" she asks rhetorically. In her considerable experience, dying is a time for people to sum up their lives, to assess what has gone before but certainly not a time to be wasted. Which, of course, they can only do if they are pain and symptom-free.

I put it to her that there is, in the UK, a media-driven campaign to legalise euthanasia. She says "campaign" is putting it a bit strongly, but acknowledges that the hospice movement needs to do more to counteract the perception that euthanasia is an easy solution. "Legalising euthanasia will create a very blunt instrument. I worry about the ability of euthanasia to undermine vulnerable people." In other words, the availability of euthanasia will make those at the margins of society even more vulnerable than they already are.

Dame Cecily quotes differences between NOP polls and scientific studies of British people's attitudes to euthanasia. In particular she points to findings that 26 per cent would like the option of an easier death when terminally ill, whereas only 3.6 per cent would want active euthanasia. The fundamental challenge for society is to address what she sees as a "fear of dependence" for the minority who would wish to end their lives. "We must show them that there is a lot of worth at the end of life." Her views are backed up by research in the latest issue of the Annals of Internal Medicine, which shows that dying people value being able to contribute to the welfare of others.

Looking back, was there a "golden period" in her life? She looks away, pauses and says that the death of a close Polish friend in 1960 gave her an enormous head of steam with which to tackle the major project in her life - the setting up of St Christopher's Hospice. Deeply bereaved, she channelled her emotions into a major lecture tour of the United States. This helped to raise a significant percentage of the money for St Christopher's. She also acknowledges Mother Mary Paula, an Irish Sister of Charity, whom she first met at St Joseph's in Hackney in 1958. "She was a huge influence on me and, sadly, she too is no longer with us."

There are so many achievements in this woman's life, it is hard to do her justice. Doctors now talk routinely about total pain - an acknowledgement of the physical, psychological, social and spiritual components of a patient's pain. Dame Cecily was the first to write about this, in a 1964 article in The Prescribers Journal. The phrase "to live until you die" was also coined by her in 1976. The conference in Dublin hears another gem: "Don't forget the facts of feeling as we learn the facts of science."

She is very clear about the challenges which lie ahead. The Third World needs to hear the palliative care message. "So many countries have problems with the availability of drugs, and legislators are fearful of legalising morphine and other opiates." The "morphine myths" (a fear of dependency, abuse and side-effects) which the developed world successfully challenged in the past 25 years are now raising their heads in South America and Africa. St Christopher's Education and Resource Centre is involved in several projects in these continents.

She believes the lessons of palliative care can be applied with equal effect in other areas of medicine. There are many patients with non-malignant pain who could benefit: "They don't need hospices, but non-cancer doctors could use the principles of palliation. It is up to the hospice movement to educate by developing an advisory and educational role."

At a time when the medical profession is coming under increasing criticism for lapses in communication she has the following to offer. "We must never patronise or idealise a patient. What palliative care teaches us is the importance of respect. Each patient has a unique story and culture. We must give a value to that which is uniquely theirs."