Dying with dignity and in peace away from a busy hospital ward

When Bernie Harding was close to death in her hospital bed, her family gathered around her, separated by a thin curtain from a busy public ward, as people nearby watched a football match on the television.

The 72-year-old had suffered a stroke and was struggling to breathe. She did not have long left. There was no silence, reflection, or opportunity for private, dignified grief, recalls her niece, Denise O’Reilly.

“She was acutely ill and we knew there wasn’t much hope. She was scrambling for breath and it was a horrible thing to see,” says Denise, the memory of seven years ago still fresh in her memory.

Her aunt had been transferred from a nursing home to to St Vincent’s University Hospital. She was well cared for by busy nurses, but the world carried on around her as she died.

About 30,000 people die in Ireland every year, nearly half of them in hospital, though the experience differs widely in every case.

The Mater Foundation, the fundraising arm of the Mater hospital in Dublin, has launched its “Remember in November” campaign, with the help of Dublin’s victorious All-Ireland winning footballers.

The Mater is better prepared than most, with seven family rooms that provide sanctuary for people preparing for the death of a loved one. Simply furnished, with a kettle and a couch, they are a treasured space.

Now, the hospital wants to have a family room for each of its 20 wards in the hospital, along with a room that can accommodate the dying and their loved ones in the final hours.

Bad news

Each room will cost between €5,000 and €60,000 to provide, depending on what facilities or space already exist to develop it.

“You can imagine families coming in, they need to be told some bad news and there is nowhere to go,” says Mary Moorhead, foundation chief executive. “They are standing on a busy corridor; it’s hard for the family and it’s hard for the consultants, they will tell you that.”

An “end of life suite” in the cancer ward will accommodate the patient in one room and have a room next door furnished with a sofa-bed.

Two of the existing family rooms have been provided by the Mater’s staff, who up to now have not lacked awareness, or a sense of urgency to do better, but have been restricted by space and funds.

“We are trying to create a room that is sort of a home from home: very quiet, there are lovely paintings on the walls. We also try to have windows so there is light coming in,” explains Moorhead.

“At the end of the day they just want to improve the culture of death and bereavement in hospitals. That’s the bottom line, it’s just respect. In the past it would have been so cold . . . so clinical.”

The concept was originally promoted by the Irish Hospice Foundation which, in 2007, launched its Hospice Friendly Hospitals Programme to make end-of-life care “central to the mission and everyday business of hospitals”.

Education has been offered since, including initiatives to set out an ethical framework to guide staff, communication skills, quality standards and a national network to share information and collaborate.

Denise O’Reilly has noticed the changes . Four years after the death of her aunt, her uncle John died in the Mater. He had been suffering from Alzheimer’s and was admitted to hospital with deteriorating health.

In his final week, there was no hustle and bustle, noisy conversations or television sets. Instead of bright lights and noise, the family remembers a beautiful room with a well-made bed and candles.

In the family room, his relatives gathered their thoughts and discussed his arrangements, in peace and in private. “You were left feeling that that last week, when he was dying, he was really treated with dignity . . . I think these memories of what these days or hours are for that person, and for you watching, make a huge difference,” she says.

Details of the Remember in November campaign can be found at materfoundation.ie along with information on how to donate and get involved.