THE MARIE CURIE APPEAL Needing someone to care . . .
In any war, there are victims to be comforted. Sharon Kingman talks to the fighters on the home front
Friday 10 March 1995
Shona lends a certain air of normality, Mrs Watkins says. "We always encourage people to come and look around before they accept admission to the hospice. One lady said she knew we had to be all right because we had a dog - I don't think she would have come otherwise."
Edenhall, with 32 beds, is one of 11 hospices run by Marie Curie Cancer Care. The charity is the largest provider of hospice care outside the National Health Service, with more than 300 beds and a revenue budget for this aspect of its work of £15m.
Shona's presence is symbolic of the philosophy of the charity's hospices, which is - in the words of Dame Cicely Saunders, founder of the hospice movement - to help people to live until they die rather than to nurse them to death. The emphasis is on involving patients and their families in every aspect of their care - rigid hospital regimes in which patients are woken and given breakfast at times to suit the nursing rotas are not to be found here.
At Edenhall, pretty floral friezes and pastel shades soften the institutional look of the corridors. The rooms have a personal touch, with homely lampshades and comfortable chairs. There is a smell of baking scones in the air rather than overboiled cabbage.
A hospice is no longer a place where people go once they have run out of hope. Apart from in-patient care, Edenhall offers a range of services. There are out- patient clinics for control of pain and other symptoms, as well as reflexology, acupuncture, physiotherapy, art therapy and relaxation classes.
Although many patients are admitted in the terminal stages of their illness, plenty of others spend some time as in-patients while medical and nursing staff work to find ways of relieving their pain or controlling other symptoms.
Still others are admitted in order to give their families or other carers a well-earned break. As a result, four out of every 10 people admitted to Edenhall and the other Marie Curie hospices are discharged.
Dr Adrian Tookman, medical director at Edenhall, says this discharge rate is only possible because the hospice offers good out-patient support for its patients, and because there is good care available from Marie Curie nurses in people's homes. Specialist cancer services are available at the Royal Free Hospital in Hampstead, where Dr Tookman also works part- time.
"In this way we offer a package of care at the hospital, the hospice and in the community," he says. "Patients can move easily from one set of carers to the next. We focus both on quality of life and quality of death."
Edenhall, like other hospices, offers palliative care - the active total care of patients whose disease does not respond to curative treatment. According to the World Health Organisation's definition, the goal of palliative care is to achieve the best possible quality of life for patients and their families while neither hastening nor postponing death and while providing relief from pain and other distressing symptoms.
Dr Tookman believes that one of the biggest changes in palliative care in the past 10 years has been the way in which it is viewed by other members of the medical profession. He says: "Other professionals now realise that palliative care as a specialty has something to offer, and that our skills can enhance the care that they are giving."
As a result, many more patients than previously are being referred for this kind of help.
Pain relief and symptom control are also more effective, Dr Tookman says. "There are new painkilling drugs, and new drug delivery systems such as continuous infusions and stick-on analgesic patches, which allow the drug to diffuse constantly through the skin and into the body.
"We also have an X-ray machine to allow us to guide the needle for painkilling injections to the exact site of the pain."
Today, much of the hospice's work is directed at the rehabilitation of patients with cancer.Mrs Watkins says: "The concept of rehabilitating patients with terminal illness is fairly new, and we offer services such as physiotherapy, which are in short supply in the NHS, particularly for this group of patients."
Dr Tookman adds that there are plenty of resources for patients who have been newly diagnosed with cancer, and for those dying of cancer - "But there is a big gap in the middle for those who have the disease. That group is not well catered for. They have had treatment but when they get a pain or they feel sick they need reassurance that everything is all right, and they need psychological support to help them to learn to live with their cancer."
This is why Dr Tookman likes patients to be referred to the hospice as early as possible. "If you follow up patients regularly, you pick up problems early, and if you do that, you can often do something about it before it becomes a crisis." He is convinced, he says, that patients who are followed up frequently do better.
One of Dr Tookman's patients on the morning I visited Edenhall was James (not his real name). In his 40s, James had surgery for colon cancer last summer. Formerly a fitness trainer, he has spent much of his time since his operation trying to recover his former level of physical fitness. Regular visits to Dr Tookman have helped to deal with problems associated with his abdominal scar and muscular pains. James's perseverance has paid off: he can now do press-ups and lift weights to his chest.
James likens the care he has received as an out-patient at Edenhall to the process of renovating a house. "It's like when you have a builder in - you need someone to lay the bricks and plaster the walls and someone else to paint the walls. The doctors and surgeons at the hospital did the brickwork and plastering for me - and now the people here are painting the walls, and doing it very well, too."
Dr Tookman uses acupuncture to help James's pain. James volunteers: "When I come here, I feel safe, good. After Dr Tookman has finished doing the acupuncture, I feel great."
James and other patients at Edenhall have the opportunity to attend Gill Thomas's art therapy sessions. Ms Thomas says: "Art therapy can provide an opportunity for the patient to explore thoughts and feelings that are difficult to put into words, and which may be easier to express using images and colours. This can be a time when people feel they can explore the painful emotional feelings that they are experiencing in a safe and gentle way."
Ms Thomas sees her role as facilitating what the patient wants to do and, above all, ensuring that the patient is not left not knowing how or where to start.
Different patients approach the opportunity to be creative in different ways, she says. "Some people will draw or paint an image and want to talk about it. Others don't want to talk about what they have drawn but just let the image speak for itself.
"Some people have been able to make images of the pain or the tumour - and that can allow the nursing staff to see their care very differently. I have known some patients come to the session in a great deal of pain and discomfort, and by the time they leave, the pain has changed - they have somehow brought it out of themselves."
Many patients feel that they are no longer in control of their bodies because of what their illness is doing to them. Ms Thomas says: "They find that they can take control of what they want to do on the paper, in terms of what materials they use and whether they talk about what they have done or not. This creative outlet helps to empower them and allows them to take control again."
Patients use the opportunity to be creative in many different ways. One man asked for help in drawing a horse. It turned out that he had been a jockey in Ireland in his youth. His request allowed him to reflect on what had been a very happy period of his life.
Ms Thomas describes another patient, a woman, who drew a tiny cartoon of a baby in the middle of an enormous sheet of paper. When she discussed the drawing with her, the woman said it reminded her of how she had felt on an occasion when she was on holiday with her family and became separated from them. She was unable to find them and, because she didn't speak French and had no documents or money with her, she was returned to England on her own by the French authorities.
Ms Thomas says: "This reflected how she felt at that time - very lost and frightened and unable to express herself - and at the time she did the drawing.
"She was aware that she was dying but she found it difficult to speak to her family about it. We were able to sort things out for her on a practical level and give her the support she needed in order to talk to her daughter more readily about her impending death."
Helping those who are dying to come to terms with what is happening to them is one of the roles of Edenhall's counsellor, the Rev Pippa Winton (she was ordained in the Church of England and has worked as a hospital chaplain).
She says: "We are working with people who are going through enormous crises in their lives and it's very important to reassure them that the strong feelings they are experiencing are quite normal."
Her philosophy is to follow the patient's lead about the best way of coping. People have different ways of coping and their own pace for facing up to what is happening in their lives. Some may be helped by being shown how denial can give them a break from their grief.
Ms Winton describes one woman, who knew she was in the terminal stages of her illness, as "brutally honest with everyone about everything". She says: I worked with her on denial and explained that most people get through these ghastly situations by denying for at least some of the time what is happening to them. She needed help in order to do that, and give herself some time off."
Ms Winton also provides support for staff caring for dying patients. "It's important for staff to realise that it's all right not to be able to cope all the time, that there may not be anything that you can say, and that it's perfectly normal sometimes to end up in tears. You don't have to be brave all the time."
She admits it is a tough job, dealing with deep sadness andemotions. "I find it particularly hard to stand back when I identify strongly with the patient - when she is a young woman with children, for example."
Her work has taught her that people are capable of surviving untold tragedy, and that they often discover enormous internal resources of which they were unaware.
"It's all part of life," she says. "It's not going to be easy, but if we all work together we can survive great sadness and our lives will be all the richer for it."
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