Making room for families

Hospitals need to provide facilities so patients’ families can meet in private during difficult times

PATIENTS’ ADVOCATE Janette Byrne recently went with her father and other family members to visit her elderly mother at the Mater hospital in Dublin. A distressed young woman had just been admitted to the ward and the disruption made it difficult for the family to chat. They decided to go for a cup of coffee, not least to give their mother a break from the ward. But one coffee shop was full, while two other restaurants were reserved for staff or outpatients.

“We found ourselves wandering aimlessly around the hospital,” says Byrne, founder of Patients Together. “At one stage we sat on a wooden seat on a corridor, but it was too draughty for Mammy. We actually ended up in the oratory. It was the only place we could be together.”

There are small family rooms on different floors in the Mater but, according to Byrne, they tend to operate on a “first come first served basis”.

As a former patient who has survived two bouts of cancer she is acutely aware of the importance of finding space to be with your loved ones – but she also knows how reluctant people are to intrude on the privacy of other families.

“If a family room is small, once the door is closed people feel excluded. There usually isn’t enough room and if someone is there getting bad news or being comforted, nobody else will want to intrude,” she explains.

Byrne believes new trends within the health service, such as centres of excellence and reconfiguration, have concentrated facilities in larger hospitals, so that many patients are now forced to travel long distances for treatment.

“If people have to travel to the centres of excellence or to Dublin, it is important that when their family comes to visit they have space to be together,” she says.

“I remember one 21-year-old girl who had cancer but her mammy had lots of other kids at home and could only get away at the weekends.

“That girl needed a good cry on her mammy’s shoulder when she did see her but there is very little privacy on a ward. And it can be devastating for other patients if people are upset or sobbing behind a curtain around their bed.”

Kilkenny man Michael Devane was so horrified by the lack of family facilities when his brother Ger was dying at St Luke’s hospital in the city that he and his family decided to do something so that others would not endure the same trauma.

Ger Devane, a paramedic and ambulance driver who worked at the hospital, died of throat cancer there on August 14th, 2008.

Four months later his mother Una died in the hospital.

The Devane family kept vigil with Ger for the last few weeks of his life. “It was our first experience of the hospital situation and I found it horrendous that in this day and age we were hanging around the corridors,” says Devane.

“Everyone is upset at a time like that, but there was nowhere for the family to sit together and nowhere to talk to the nurses. It’s hard on the staff too,” he points out.

The family became involved in “The King of the Castle”, a major fundraising drive in Kilkenny which raised more than €200,000 for various charities, with inexcess of €30,000 now earmarked for converting part of the former outpatients department into family facilities.

Anne Slattery, general manager at the hospital, hopes the spacious family room will be up and running in time for the second anniversary of Ger’s death in August.

“Families in that situation spend 24 hours a day in the hospital,” says Devane. “We know other families are now going through what we went through with Ger. It is not something you think too much about until it happens to you.”

Slattery agrees that there is a huge need for a facility especially for bereaved families. “If a family is up all night with someone who is very ill they need a room, somewhere to sit down, make a cup of tea or chat in,” she says.

She points out that if staff have to break bad news or give sensitive information to a family they are currently forced to try to find an empty doctor’s office and if this is not possible they have to do it on the corridor.

On May 19th, the Irish Hospice Foundation (IHF) will publish the results of an audit of end-of-life care in Irish hospitals, the first such audit in Europe.

The hospice has long highlighted the desirability of having single rooms for terminally-ill patients in order to ease the trauma for the patients, their loved ones and for other patients.

Paul Murray of the IHF says that when people are dying, their priorities are to be with their loved ones and to have space and privacy.

It has been estimated that 48 per cent of the almost 30,000 people who die in Ireland every year die in acute hospitals, while 20 per cent die in long-stay facilities such as nursing homes. Of those who die in hospitals 56 per cent are in multi-occupancy rooms while 44 per cent are in single rooms.

If the patient is not in a single room, the need for a convenient family room or a space to grieve and to talk to medical staff is even more crucial.

“There have been situations where people have died in wards where the television was blaring, while there was also a case where a bed was just 13 inches away from the next bed,” says Murray.

Almost two years ago, actor Gabriel Byrne railed against conditions endured by those who die “behind cheap curtains with strangers three feet away” in Irish hospital wards, not to mention the trauma of the bereaved families forced to hang around on hard chairs “in windowless airless rooms” .

Murray says that at last people are beginning to see that “how we go out is as important as how we come in” and attention is being paid to the act of dying and to the wellbeing of those left to mourn.

He says the audit will not be all bad news and will show that people who die in Ireland are much more likely to have a loved one at their side than, for example, people in France.

Devane and his family believe that every Irish hospital should provide facilities to ease the burden for the bereaved, as well as the ones to whom they are saying goodbye.

48%of the almost 30,000 people who die in Ireland every year die in acute hospitals.

20%die in long-stay facilities such as nursing homes.

Of those who die in hospitals 56%are in multi-occupancy rooms, while 44%are in single rooms