A new project aims to improve the care of the dying in hospital. Anne Dempsey reports
Seventy-eight-year-old Dessie Lynch of Bettystown, Co Meath had one big fear. He was terrified of dying in hospital. Fit and healthy in spite of an ongoing heart condition, in July last year, he became constantly tired and breathless. He had a brief stay in Our Lady of Lourdes Hospital, Drogheda, and on August 10th reluctantly agreed to return there to treat a chest infection.
"Over the years, my husband would say to me regularly 'don't ever let me die in hospital". He was a quiet man, he just loved being at home. He would be very courteous, wasn't someone to complain, and if they came into the ward to take blood 10 times a day, he would accept it, but he found hospital very difficult," says Betty Lynch, who has five adult children.
As the days passed, Betty felt he seemed no better. She told the hospital of his strong wish to be at home and they explained they were trying a new antibiotic. "On Sunday August 29th, Dessie seemed very agitated, very tense, his hands gripping the pillow. I'd never seen him like that and asked if I could take him home. They said they would need to organise oxygen for home use and I should contact the liaison nurse next day."
The following morning, the family was summoned urgently from home as Dessie had taken a turn for the worse. "I met the staff nurse in the corridor and said I wanted him home, I realised then his time was limited, and as one human being to another asked that Dessie be allowed his dying wish. When something big happens, I can be calm and focused. If necessary, I would have wrapped him in a sheet and taken him.
"When the ambulance drew up outside the door, you could see the relief on Dessie's face. He visibly relaxed, sat out on the bed and asked for a mug of tea and a Tuc biscuit.
"Dessie said he wanted a few moments on his own. I understood completely. He wanted to absorb the peace, to register that he was home. I stepped into another room with our GP, a few minutes later, a friend alerted us that I should return. When I stepped back in again, Dessie was taking his last breath. It was so stress-free, so relaxed. We would have been married 50 years the following day. Since his death, to think I was able to give him the one thing he asked for all his life has been a great consolation."
Dessie Lynch is not alone in not wanting to end his days there. Two-thirds of Irish people want to be cared for at home if dying, yet every second person dies in hospital, according to a study published last November by the Irish Hospice Foundation (IHF). The survey is part of a two-year IHF initiative, Care for People Dying in Hospitals Project in conjunction with Our Lady of Lourdes Hospital, Drogheda.
Last Thursday a national conference Finding a Better Way set out the case for introducing a hospice philosophy into Irish hospitals, and illustrated some moves already afoot in Drogheda, which is pioneering the first such project in Europe.
Dealing with death and dying has traditionally posed difficulties for hospitals. The fact that 15,000 people annually die in hospital tends to be unacknowledged in policies and practises.
In Our Lady Of Lourdes, a 339 bed HSE - North East Area hospital, up to 300 people die annually, including stillborn babies and road traffic fatalities.
Hospital space is at a premium and project focus groups revealed this can affect the quality of care given to dying patients and their families. Staff were uneasy with discussing diagnoses on crowded corridors or witnessing a patient dying behind curtains on a six-bed ward with a football match blaring on a nearby television. "The staff make extraordinary efforts to find a single room for a dying patient," says project manager Mervyn Taylor
On the sixth floor, clinical nurse managers Ann Kerbey and Trish Donnelly open the door to a crowded room, overlooking the graveyard. "This is the only place I have to take a patient or family to give them bad news. Usually someone already here has to leave to let us in, and there are constant interruptions," says Kerbey. On the wall opposite is pinned the vision the brave new world - a computer-aided design of a similar room now refurbished as office/sitting room, providing a more appropriate space for such conversations.
"We have eight rooms identified throughout the hospital, currently used either as staff rooms or to offer privacy to a dying patient. Our hope is to seriously upgrade each of these, developing a family room on each corridor," says Taylor. A room for dying patients and family is also top of chaplain, Fr Richie Goode's wishlist. Next is to improve the mortuary which is dark and poorly sited beside the laboratory and staff lockers. A family room nearby has already been refurnished and redecorated.
"The hospice philosophy about giving care not just to the body, but to the individual already happens," says the chaplain. "We had a terminally ill patient here who was really missing her dog, and the nurses arranged for her dog to be brought to the window they could see each other. When we talk of palliative principles, it's not as if we are at point zero, it's about tuning in to the value of what we are already doing, and building on that."
Dolores Donegan, project development worker, has continued to seek the views of nursing staff. Many practical needs emerged including how to give bad news, support families and access protocols for different faiths. She is now organising a series of education awareness days on death and dying for 550 staff, bringing together doctors, nurses, social workers, health promotion personnel, health care assistants, porters, catering and cleaning staff. Someone cleaning round the bed, or bringing meals throughout the day, she says, can be a significant link in the caring chain. The use in hospitals of plastic bags to return deceased patient's belongings has been replaced in Drogheda by a Family Handover Bag, a large canvas holdall in soft green. The project team have produced a series of information leaflets on bereavement post-mortems, breaking bad news, as well as explanations on how different faiths approach death.
Traditionally, a hospital bill was the first and perhaps only contact with fee-paying relatives after a death. Now they will receive a sympathy card signed by the staff nurse who cared for their relative - with the bill following in due course.
But perhaps there is one change which best illustrates the project. In the past, to mark and honour a death on the ward, the staff would light a candle in the cubicle, using what was to hand, typically an ancient candlestick set in makeshift holder. A health and safety directive ruled this a potential fire hazard. Dolores Donegan came up with an acceptable solution - a small nightlight enclosed in a half tumbler of blue glass. Simple, safe, beautiful, it will be issued to all wards.
Mervyn Taylor says that changing the culture about dying in hospital is a national issue. "It's not something that can be solved here on its own. The way in which we envision hospital care has to change nationally. It is difficult for hospitals to cope with dying because it's not what we do. Here in Drogheda we are beginning with what we can do and we try to keep it simple. It's about paint, pain control, pastoral care," he says.