A blessing before death

As modern medicine develops its power to prolong life and cure disease, so too a tendency grows to look away from death, as though it were a failure. But in hospices, patients are given the peace and care they need to ?die well?. The Tablet?s assistant editor went to see what that means in practice.

THE sign that once hung above the front door, Home for the Dying, was taken down years ago. But first-time visitors to St Joseph?s Hospice in Hackney, east London, probably approach it feeling a little subdued. Once inside, the mood is likely to lift before long. Large windows fill the hospice with light and in every room there are flowers, pot plants, and comfortable modern chairs. There is an absence of institutional linoleum and not a whiff of disinfectant. Along the wards many patients have their own rooms, but few seem ever to be alone. Even those who cannot sit up and chat seem to have someone, as often as not a nurse, sitting silently with them.

St Joseph?s is one of England?s oldest hospices. It was opened in 1905 by five Sisters of Charity who came from Ireland to serve the poor in London?s East End. Today, a large modern building stands in place of the original row of houses given to the nuns by an anonymous benefactor, built around a handsome chapel that survived the blitz. The hospice has beds for some 60 patients, most of whom have cancer, and it also runs a day hospice and community care team for terminally ill people living at home, an education unit which shares St Joseph?s expertise in palliative care with other health professionals, and a bereavement counselling service.

Sr Teresa Clarke has been chief executive of St Joseph?s since 1999. She says she will always remember the moment she realised her future lay in such a place. I was doing my nursing training at a big general hospital in Dublin and the world seemed to be full of progress and discovery, she says. I thought it was so exciting that in the space of a few days I had witnessed some amazing pioneering surgery and an Apollo space mission had taken off. It was also during those few days that she became acutely aware of the suffering of one particular woman at the hospital who was dying of cancer.

She had terrible nausea. We changed her medication several times but it just wasn?t stopping the sickness, she says. I remember standing in the doorway of her ward, looking at her lying in bed, and asking the doctor, ?What can we try next?? He replied, ?I just don?t know.? Suddenly my illusions about medicine and progress seemed to crash around me as I realised that whatever we did, this woman was going to die. Since then she has always wanted to work in an environment that devotes all possible medical research and knowledge to the care of the dying.

The care that every patient in St Joseph?s receives is of a quality that hospitals, where most deaths still occur, are simply unable to give the dying. It ranges from close attention to the comfort of a patient?s position in bed, such as the careful arrangement of pillows, to time-consuming efforts to find a new home for someone?s dog or arranging against all odds for a patient to go home for one last weekend.

The attitude to a patient?s medical care is also different from that found in a hospital. When my father was in hospital, it was very difficult watching him being forced to move himself from his bed into a chair, just two steps away, but so painful for him, says Rebecca Palmer, whose father recently died at St John?s Hospice in Lancaster. The nurses would call out, ?Stand tall, stand tall!?, because that was what they were geared towards, getting people better, but the poor man was dying; he was exhausted and longing to just lie down and have some peace. He only got it when he arrived at the hospice.

If death is seen as a failure, as it necessarily is in a hospital, then efforts are inevitably diverted away from preparing for it. But in a hospice, medicine, particularly pain-controlling drugs, can be directed towards helping patients achieve a good death; a term that has been commandeered by the pro-euthanasia lobby although good deaths take place in hospices every day.

Great strides were made in the area of pain control in the Sixties and Seventies by Dame Cicely Saunders, who spent seven years working at St Joseph?s during the early part of her career. It was here that she did much of her groundbreaking research into pain control before going on to establish St Christopher?s Hospice in Sydenham, south London, a centre for research that has become a model for hospice care around the world. Her maxim, Constant pain needs constant control, led to the regular giving of moderate doses of strong opiates which replaced the previous practice of withholding such drugs until the pain reached an extreme level.

Her belief that patients were less likely to express an interest in euthanasia when their pain was controlled has been supported by studies that suggest that the request to let me die tends more often to express a desire to die in peace, free from pain and without burdensome treatments to prolong life, than for a deliberate hastening of death.

Dame Cicely gave much-needed clarity to the concept of palliative care when she coined the term total pain to describe the physical, spiritual, psychological and social suffering of the terminally ill. But she believes that palliative care should place as much emphasis on a patient?s journey from life to death as on their medical treatment. This might, she says, involve simply sitting by their side, listening, or giving them the space and peace to make that inner journey. She is a passionate Christian but is not prescriptive. People can believe without belonging, she says. Everyone looks for spiritual meaning at the end of their lives and I have seen so many people make a spiritual journey of their own that enables them to lay down their lives with peace.

She says that if she ever sensed a resistance from medical professionals to her insistence on the need for spiritual care, she would simply take them on a tour of the hospice. Then they would see how very alive the dying are at St Joseph?s.

Hospice care of this sort is far from being available to everyone who needs it. There are 208 hospices in Britain, the majority of which ? St Joseph?s included ? are voluntary, with some 3,029 beds. The National Health Service funds about 30 per cent of the costs of voluntary hospices, which have to raise the remainder through fundraising. Some hospices have beds that are empty because they cannot afford to fill them.

Nonetheless, rising life expectancy rates and corresponding increases in rates of terminal disease are likely to push up demand. Palliative care became a medical sub-speciality in 1987 and it is growing rapidly outside hospices: in hospitals palliative specialists work alongside doctors ? a practice pioneered at St Thomas?s Hospital in London ? and there has been a rapid increase in day care services and home care teams. Some hospices, like St Joseph?s and St Christopher?s, offer palliative care courses for health care professionals from hospitals and health centres in order to spread their expertise.

But one particular strength that will not be so easily transferred from the hospice into other palliative care situations is the care of a patient?s friends and family. This is because such care is centred very firmly in a particular place: the hospice itself. St Joseph?s offers bereavement counselling at the hospice for as long as it is needed. Every two months an inter-denominational service of remembrance is held in the hospice chapel and a Jewish service is held elsewhere in the hospice.

Almost all of St Joseph?s 150 regular and indispensable volunteers were introduced to the hospice when a relation was cared for there. I can never repay you for what you gave my Dad in his final weeks but I would like to try by becoming a volunteer, reads one message in the visitors? book.

In the 12 years that I?ve been here, says Maureen, who works at St Joseph?s as a receptionist, I?ve seen the same friends and families come back time and time again. Some go to the chapel, others sit in the garden, or even in the waiting room: wherever they found some peace and quiet with their relatives before they died. Lovely things happen at St Joseph?s. It is a place, she says, where people find the time, space and peace to heal and deepen relationships. Families come together here; there is happiness where they might expect to find only sadness and bereavement.

Kenny Pereira?s wife Jenny died at St Joseph?s in April. She had been at the hospice for three months. In the beginning I didn?t want her to come here, he says. In hospital she was being treated to get better; I knew that in the hospice there would be no cure. But she was treated tenderly, and her death was so peaceful.

Every day his wife, who was a teacher, would go to the day-care hospice to paint and do pottery, even when she grew very weak.

Before she died she made a beautiful clay bowl, he says. When she died I forgot all about it but one day I was in the garden at St Joseph?s where we used to sit together, and I suddenly remembered it. So I went and asked and they went away and found it. My wife had inscribed her name on the bottom and they baked it ? she hadn?t had time to finish it ? and painted it and gave it to me to take home. He pauses for a moment and shakes his head. That was the last thing she ever did and they had kept it. God has been very good to me.