Hospices allow the terminally ill live their last few weeks in pleasant environments that hospitals cannot provide, writes Rosita Boland
'It's like a secret club that nobody wants to be in, but you know nothing about it until you experience it yourself." Frances is talking about the death of a close relative. On Good Friday last year, her father died at Our Lady's Hospice in Harold's Cross, Dublin. Only a week earlier, he had been living a perfectly normal life at home, not particularly concerned about going into hospital to check out what he thought was a minor digestive problem.
"They opened him up to have a look and closed him again," says Frances. Pancreatic cancer had progressed so far that only days of his life remained. He stayed in the hospital, which had no palliative care or oncologists, for a "nightmarish" week and then was given a bed at Our Lady's. He died peacefully during his second night there.
"The hospice saved my father from a hard, inhumane death," says his daughter. "In the hospital, nobody ever consulted us on anything. They did their job really well, but as far as they were concerned he was their patient and the bigger family just didn't matter at all. Once he got here, his pain was controlled, he was dressed in his own clothes and he looked like himself again. His medical team made us feel so welcome and told us every single thing they were doing. We didn't have to fight any more for information. They paid as much attention to us and our needs as they did to him."
Our Lady's Hospice is Ireland's oldest and biggest, with 36 palliative-care beds. There is also St Francis Hospice, with 19 beds, on the northside of Dublin. Cork, Limerick, Galway, Sligo and Derry each have one and Belfast has two. But Our Lady's is probably the one with which people are most familiar. The hospice, which is funded by the Department of Health and Children, also has one of the highest-profile fund-raising events in the country: the Light up a Life Christmas tree erected in the grounds every December.
"We also offer extended care and rheumatology rehabilitation," says Sister Helena McGilly, its director of nursing. There are 100 beds in the extended care unit, for people who are chronically ill, and 46 beds in rheumatology, which takes people who have bone disorders. It is, however, palliative care with which most of us associate Our Lady's: treatment of the terminally ill.
The idea of going to a hospice is liable to make many people shiver; it's a notion that for many years was associated solely with a swift decline. But improving medical care in the early stages of terminal cancer has changed the nature of the hospice.
"In the past, you came to the hospice to die. Now it is also a place where patients can be supported in their illness," says Dr Liam O'Síoráin, medical director of Our Lady's. About 40 per cent of patients in the early stages of cancer now come from general hospitals after treatment such as chemotherapy. If they respond well to chemotherapy, the stabilising care they then receive allows them to return home for a time. There can be months between admissions.
Our Lady's has a good staff-patient ratio: 410 staff run 182 beds; there are also volunteers: 100 at the moment but as many as 200 in the past. Not only does this ensure that patients receive the best possible care; also it means that staff have time to ensure patients' families receive the attention that busy general hospitals under tremendous pressure simply can't deliver.
In addition to a full medical team, there are care assistants, social workers, counsellors, physiotherapists, occupational therapists, chaplains, masseurs, art and music therapists and reflexologists. Our Lady's is in the care of the Sisters of Charity, whose religious ethos is evident throughout the buildings, from statues to posters, but patients need not be Catholic to be admitted.
Our Lady's is a public hospital and open to anyone who is 18 or over. It is not easy to get a bed, however, as there are too few to meet the demand. O'Síoráin explains how they address the sensitive issue of patient admission.
"We allocate points to patients based on their needs. If their prognosis is short - less than a week - they will be priority. So will patients who live alone, with no carer, or where there are young children, and where people are being cared for at home. By and large, if you are in a hospital you are already medically in a safe environment."
He estimates that only about a third of patients already in hospital get beds at Our Lady's but that two-thirds of home-stay patients are admitted.
When they arrive, patients are met by a nurse and doctor, who then spend time with them to assess how much patients know about their illnesses. "Often in Irish families, people don't want patients upset, and they don't want to talk about their illness with them," O'Síoráin says.
"We need to find out what their understanding is. Sometimes people have unrealistic expectations on admission, and this is a time when the air can be cleared. It's about accepting that on one level you are not going to get better but that here we can give people back a little bit of choice and independence about their care."
Jacqueline Holmes, the hospice's assistant director of nursing, says: "People have very little control over their disease, so it's really important to have control over the other parts of their lives, to empower them. We control the pain here and enable them to live their lives as independently and comfortably as possible, and with dignity."
All hospitals try to promote holistic care, but very few have the luxury of extending that care to patients' families. "Here, we're not just looking at the man in a bed with lung cancer, we're looking at a man who is a husband, father, son and all the people involved in that. You couldn't care for him properly if you ignored all that."
So Our Lady's tries to make every provision for visiting relatives. Children are allowed the same unrestricted access as adults, for example, and there is a supervised playroom. Unlike most hospitals, Our Lady's has no set hours for visitors: they can stay all day and night if they want. There is even a small apartment with mattresses where a family can camp overnight, as well as plenty of reclining chairs and extremely flexible staff to make all this possible.
The palliative-care unit has two wards, each with six private rooms. The rest of the beds are in single-sex four-bed bays. There is plenty of activity, yet the atmosphere is much less frenetic and somehow more peaceful than that of an ordinary hospital. The spacious rooms and bays all have French windows, which look onto pretty green spaces. In fine weather, patients who are well enough can walk the grounds or be wheeled outside. There is something very reassuring about these doors that open onto gardens; everything possible is being done to create an environment in which patients and visitors do not feel trapped.
There are a few surprises. A white Labrador called Cashel trots freely through the wards, standing still for ritual patting every few steps. He has been at Our Lady's for about seven years and make the wards more homely.
Looking into one of the bays, I notice a man sitting reading the paper with a pint of Guinness in his hand. Down the corridor is a smoking room for patients. "And if people want, they have a glass of wine with dinner," says Holmes. "It's about quality of life." She doesn't say so, but it would border on the pedantic to forbid a terminally ill patient from enjoying a cigarette or a glass of wine.
When patients die, their beds are not given to other people for 24 or 36 hours, to give everyone a bit of time to adjust.
When possible, dying patients are moved to the private rooms. Not all patients want the private rooms their medical insurance entitles them to, however: they prefer to be with others rather than be alone. Many patients do die in the four-beds bays. Is it not very distressing for terminally ill patients to see someone on their bay die?
"Most patients are not as distressed as you would imagine," O'Síoráin says, choosing his words carefully after witnessing many deaths during his years at Our Lady's. "For many patients it can be reassuring to realise they can die peacefully." And a peaceful, dignified death, no matter how few of us want to think about it, is truly a gift.
• You can contact Our Lady's Hospice at 01-4068700 or visit www.ourladyshospice.com