A programme aimed at facilitating a hospice standard of care in hospitals has just been extended to Our Lady's Children's Hospital in Crumlin, writes Claire O'Connell
When a terminally ill person in hospital approaches death, some tough decisions have to be made. How can their symptoms best be managed? What can be done to help them die with dignity? Can they end their days at home if they want to?
And, when that person is a child, decisions about dying, death and bereavement can weigh even heavier. The death of a child has a huge impact and keeping the child and family at the centre of decisions about dying, death and bereavement is critical to help them through it, says Sharon Hayden, deputy director of nursing at Our Lady's Children's Hospital (OLCH) at Crumlin.
That's why the hospital has signed up to a new five-year Hospice Friendly Hospitals programme, officially launched yesterday, which aims to encourage a more hospice-like culture in hospitals around the State and help ease the transition for terminally ill patients, their families and carers.
One of the biggest decisions is where to die, and the family home is often the best choice notes Hayden, who chairs the hospital's committee on dying, death and bereavement. "We encourage children to be at home and we assist families to care for the child when the child is dying, where possible," she says.
"Hospital isn't a normal environment. It's not a homely place. It's busy and noisy, there's a lot of equipment. Instead, at home a child has got a bit of normality, friends and family can come and there's no limit to staying."
Families generally look at bringing the child home as a positive thing, she adds.
"A study at OLCH showed that while it was very difficult at the time - the worst thing that could possibly happen to a parent is losing a child - being able to bring the child home was really amazing for them," she says. "But if that can't happen or families do not want their child dying at home, that's okay and we are very much here to support them.
"Equally, if the family decide at the last minute to take their child home we will do everything in our power to help them; we have had air corps ambulances with us to get children home as fast as we possibly can."
Giving children and their families a voice in decisions about dying and death is key, according to Hayden. "Children are often the quiet entity in all of this and it's important that they do get a say. And to act as an advocate for the families is important too."
Psychologists and palliative care teams at OLCH currently work with terminally ill patients and link into community-based services if it's best for the child to go home to die.
"The care is to give them quality of life and have their symptoms relieved," says Hayden. "So as well as pain relief they may need to see someone about their ears or their eyes. What is going to make them comfortable and make their transition smoother - do they need physiotherapy, additional equipment at home?"
But there's room for improvement, especially around how the hospital communicates with the child and family, says Hayden. Last week 11 staff members at Crumlin underwent training on how best to interact with dying patients and their families, and they in turn will train others at the hospital, including medical, nursing, porter and canteen staff.
"This is an opportunity for us to step back and reflect on how we can improve, and to really focus on the topic of dying, death and bereavement," she says.
"That's a really hard topic for anyone to discuss in the professions because we like to see everybody getting better. But this has everybody at a most senior level talking about dying, death and bereavement, which didn't really happen before."
The hospital also wants to accommodate different cultural practices and recognises the need for single rooms if a child is dying in hospital, she adds.
"The unfortunate aspect is that children do die. And for that child and family you only have one opportunity of helping them and you can't go back, so trying to do the very best you can with the child and family at the centre is absolutely key."
OLCH is one of more than 40 acute and community hospitals in the Republic in the Hospice Friendly Hospitals programme, which aims to develop new standards and instil hospice-like values in hospitals caring for dying children and adults.
"We want to ensure that people have a caring, careful death," says Paul Murray, programme development coordinator of the Irish Hospice Foundation, "that from hospital gate to mortuary and beyond that we treat people with the dignity that death deserves."
Around 30,000 people die in the State each year, with 60 per cent of them dying in hospital. But 90 per cent of them don't want to die there, according to Murray.
"We have to try to make the hospitals like hospices when somebody is dying," he says, noting that needs such as parking, communication and religious practices need to be met sensitively, and that single rooms should be available.
"There's nothing dignified about dying on a ward with four or five people. Personally I don't want to die on ward with Sky television blaring in the background," he says. "As Irish people we tend to think that we are good at death and we are. We are not afraid of death, we are able to have open coffins but we have a long way to go.
"And we believe firmly in the Irish Hospice Foundation that if you improve hospitals for people who are dying, you are improving them for everybody."
The little things matter
The death of a child is one of the worst experiences a parent can have. But small things can make a difference when you look back on it, says Anne Farrelly from Knocklyon in Dublin.
Her son Conor died at Our Lady's Children's Hospital in Crumlin in 2001. The 15-year-old, who had cerebral palsy, became unwell after an operation and, despite fighting back for several weeks, he passed away that December.
Six years on, Farrelly is now on the hospital's dying, death and bereavement committee. Her role is to bring a parent's perspective as the hospital strives to improve services for terminally ill patients and their families.
Looking back on her own family's experience, she now cherishes certain events that helped them through. She recalls lighting a candle for her son in the church on the night before he died, and how she and her daughter Deirdre were able to dress Conor for the last time when his body was being laid out.
"These are things we are glad we did now, further down the road," says Farrelly. "How it was all dealt with at the time will make a big difference to you when you are looking back on it.
"It's never going to be a nice experience, but it's important that you'd feel everything was done as right as it could have been done."