For the doctors and nurses at the south London hospice it had been a wrenching weekend. Twelve patients had died between Friday and Sunday nights, and by Monday morning death’s wide swath had left the staff physically and emotionally exhausted. It was time for a tall, somewhat stout, white-haired woman to provide the reassurance of her presence: standing in a stairwell, in the path of grief-bruised nurses and doctors, greeting each with a jovial smile and concerned questions: “How was your weekend?” “Are you exhausted?” “Are you coping?”
If there is one thing that Cicely Saunders knows about, it is coping. This much-honored 70-year-old physician, who eight years ago was made a Dame of the British Empire by Queen Elizabeth, has devoted much of her life to caring for the dying, and in doing so has changed the way of death for millions of people. Dame Cicely is England’s modern-day Florence Nightingale. She has made herself death’s interlocutor, bargaining away the pain and isolation in return for peace and acceptance. She has done this as much through the strength of a very forthright — some say autocratic — character as through good medicine. “Her spirit is not to be complacent,” says Dr. Samuel Klagsbrun, professor of psychiatry at Columbia University who has known Dame Cicely for more than two decades. “Even at this age she stirs the pot and challenges people.”
In 1967, inspired by a gift from a dying patient and armed with an indomitable determination, Dame Cicely opened St. Christopher’s, the world’s first modern hospice. In doing so, she changed the impersonal, technocratic approach to death that since World War II has become endemic in overwhelmed Western hospitals. No heroic efforts were made to prolong life. There was no operating theater; no temperatures were taken or pulses recorded. Instead of specialists mumbling into charts, there were doctors sitting at bedsides holding patients’ trembling hands. When death came, it was not with the accompaniment of IV drips and respirators but with tranquil normality. Above all, through the skillful and unobtrusive administering of drugs, there was control of the agonizing pain that is often bound to terminal cancer. “What I did,” says Dame Cicely, “was to allow patients to speak for themselves, to suggest what we ought to do to give them safe conduct.”
Earlier this month, she welcomed the Queen to St. Christopher’s to help celebrate the hospice’s 21 years as the mother ship of a worldwide movement that has become known simply as “hospice.” Increasingly people are choosing the death with dignity pioneered at St. Christopher’s, either in inpatient facilities or, more often, at home through hospice-administered visiting programs. Hospice care is available in developing countries, such as India and Thailand, and in the Communist world (Poland has opened five hospices). But no country has embraced the concept as widely as the U.S., which has 1,679 hospice programs. Last year 172,000 Americans, some 90% of them suffering from cancer, chose hospice care for their final days. AIDS sufferers are also finding that the hospice’s sympathetic aura can ease them through the last days of their debilitating illness.
Although Dame Cicely is a symbol of caring medicine to doctors and nurses around the world, today she is more administrator than practicing physician. Three years ago, she handed over the job of medical director to Dr. Tom West, 58, her close friend of many years, and became chairman of the hospice’s management council. She continues, though, to keep a firm hand on her 62-bed hospice, doing weekend medical duty once a month, regularly dropping by to chat with patients and dispensing advice to doctors.
Much of her energy is given to fund raising. The hospice charges no fees, and only one-third of the (pounds)3 million (roughly $5 million) annual budget comes from the government-run National Health Service. Once a world traveler, she now stays close to home so that she can minister to her ailing 87-year-old husband, Polish Artist Marian Bohusz-Szyszko. She has always studiously avoided the spotlight cast on her more famous contemporary, Elisabeth Kubler- Ross, the author of On Death and Dying. “I am not a cult figure,” she once angrily told an adoring American.
Why would such a woman, an Oxford graduate and the daughter of a wealthy London real estate agent, choose to devote her life to death? One answer is her religion. Converted from atheism as a gawky, somewhat gauche, young woman, she went through a period of evangelistic fervor, during which she was a Billy Graham counselor, before she finally settled into the Anglican church. Her faith created much apprehension among doctors when St. Christopher’s first opened. “We suspected she wanted to produce deathbed conversions,” says Consulting Psychiatrist Colin Murray Parkes. “How wrong we were.” Insists Dame Cicely: “There’s an absolutely built-in rule that there are no religious pressures here.”
Another explanation for her dedication is that she has trained as a nurse, a social worker and a doctor (she was nearly 39 when she qualified) and has learned the ways in which love and death are often inevitably linked. She has always had an extraordinary gift for establishing intimate contact with patients, drawing strength from them even as she gives it. She talks lovingly, almost as a mother, of long-gone patients — Mrs. G., Louie, Ted — who would listen to her problems and anxieties.
Above all, there were her intense relationships with two Polish men, both dying of cancer. One was with a 40-year-old waiter, whom she met while working as a medical social worker at St. Thomas’s Hospital in London. She recalls how he left her (pounds)500 (then worth more than $2,000) in his will, saying “I will be a window in your home.” The words are now engraved below a window in St. Christopher’s lobby. The other relationship, which her biographer, Shirley du Boulay, calls “unconsummated, unfulfilled, unresolved,” was with a refugee in a home for the dying in east London, where she had gone to work as a newly trained doctor. Saunders is not one to reflect deeply on these obviously profound friendships, other than to say, with an almost dismissive formality, that they “helped me learn the possibility to stay and really look where I saw something of a welcome.”
Saunders did not invent the hospice. The Greeks probably originated the concept of a place to go to die before 1000 B.C. It has its modern roots in a home for the dying opened in Dublin in the late 19th century by an associate of Florence Nightingale’s. Not long after, the Sisters of Charity opened a similar home in London. It was largely at that home, in the 1950s and 1960s, that Dame Cicely developed her ideas for a modern hospice that would bring physical and spiritual peace in the face of death. The end of life “can turn out to be the most important part,” says she.
One powerful reason why that is true at St. Christopher’s is the system of pain control developed by Dame Cicely and others. The hospice only admits patients with terminal cancer or amyotrophic lateral sclerosis, ALS, the motor-neuron illness commonly known in the U.S. as Lou Gehrig’s disease. Fully 60% of new arrivals suffer from pain that has been consuming them, sometimes for weeks. With a combination of morphine and other drugs, such as tranquilizers, administered every four hours, the pain is quickly eliminated for most patients. But other components of pain are, in their way, equally agonizing. “I would put at the top of the list just anxiety and fear,” says Dame Cicely. “It’s very frightening to be very ill and feel you are losing control.”
The nurturing begins the moment the ambulance arrives with a new patient. Madeleine Duffield, the matron (nursing director), is at the door with a warm bed covered with a colorful afghan. Questions like “Doctor, am I going to die?” are answered honestly. “Deception is not as creative as truth,” says Saunders firmly. “We do best in life if we look at it with clear eyes, and I * think that applies to coming up to death as well.”
It is not hard to find patients at St. Christopher’s who will complain about the lack of honesty when they were in the hospital. Or of the suffering because medication was only given when the pain became too enormous to bear. Or of the indignities forced on the dying. “I saw a man die full of wires and plugs and little bleeping things,” says Cancer Patient Ted Hughes, 56. “He was treated like an embarrassment and put in a side room with curtains around his bed.” By comparison, says Patient Phyllis Sadler, 87, “I am looked after with such love and kindness here.” So well does St. Christopher’s revivify its new patients, physically, mentally and spiritually, that 15% of them are soon well enough to return home, even though they seemed only days from death when they arrived. At home they are looked after by the hospice’s team of five visiting nurses and a doctor on 24-hour call. Even after a patient dies, St. Christopher’s offers bereavement counseling to relatives.
Still, death is a relentless presence and that can take a toll on the staff. Dame Cicely has helped create a system of team support, with doctors, nurses and social workers watching one another for signs of stress. “Sharing of grief is absolutely essential,” says Psychiatrist Parkes. That goes for Dame Cicely as well. In her 21 years at St. Christopher’s, more than 13,000 people have died, including her mother. “If death doesn’t get to you, I doubt you should be in it,” she admits, and in the past, she has consulted a psychiatrist for problems she experienced in recovering from a bereavement. But former Matron Helen Willans insists that since Dame Cicely was married for the first time eight years ago, “she has been a much happier person.” She shows immense tenderness to her husband, bringing him to the hospice every day from their home nearby to paint in an upstairs studio. His pictures adorn nearly every wall in St. Christopher’s, a blaze of colorful Crucifixions and abstracts that, she says, “are icons of life.”
To her staff over the years, she has been known to be somewhat less tender: often brusque and occasionally imperious. Dr. Anthony Smith, who trained at St. Christopher’s and is now medical director of a hospice north of London, recalls that an interview with Dame Cicely was “like going to the headmaster’s study.” Others complain that she has been slow to adapt to new needs, particularly the admission of AIDS patients. “She simply wouldn’t allow an AIDS patient to breathe on St. Christopher’s,” says one observer. Her views have changed, but she still insists that any AIDS patients admitted must also be suffering from cancer. In fact, one such patient was admitted to the hospice’s home-care program. Says Saunders: “Hospice didn’t set out to look after everyone in the world who was dying of everything.”
The other aspect of her personality, the humorous, tender side, is reflected not only in the devotion of her staff but also in the lively, casual air of St. Christopher’s. Visitors, even small children, are admitted at all hours. Dogs stroll around, visiting their sick owners. Some patients sip whiskey with their visitors. “It’s like a five-star hotel,” says an elderly patient. More, perhaps, it is a throwback to the early days of the century, when care from birth to death was normally delivered at home. As Matron Duffield observes, “A hospital would insist on a strict diet for a dying diabetic patient. We serve chocolate cake.” Saunders calls it creating an ambience of safety. “We make it possible to face the unsafety of death.”
She has never lost her sense that death “is an outrage” for those left behind. “It’s an outrage when a young father or mother dies, leaving two kids, or two old people who have spent 50 years together are parted.” She is sustained by her belief that “this isn’t the end, and parting isn’t forever.” For those who take a more secular view of death, there are very practical reasons for the hospice philosophy. “We must not lose the chance,” she says, “of making good on a great deal of untidiness in our lives, or of making time to pack our bags and say, ‘Sorry, goodbye and thank you.’ ” There are many in the world today who, after watching death come calmly and peacefully to relatives, have good reason to say thank you to Dame Cicely.
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