Anne Dempseyrecounts her own personal story of loss as the Irish Hospice Foundation launches a programme which aims to introduce hospice principles into hospital practice
The curtains around my husband Dave's bed as he lay dying in hospital last year did not protect us from the shouts and curses of the man opposite who called repeatedly for the nurse and grossly insulted her when she appeared.
Our family group had arrived as an emergency three hours earlier, and after time in the resuscitation unit, we suffered the trauma of accompanying Dave - obviously very unwell - as he was publicly shunted through the hospital, passing indifferent, curious and avid eyes on his way.
Now as we sat as a family in the dim ward, nobody came to silence the aggressive patient. Nobody seemed to feel that something as enormous as death needed to be marked with reverence and dignity.
Dave died peacefully in our presence some time later. They say the sense of hearing is the last to leave, so it is to be hoped that his final sounds were those of familiar and loved voices rather than the rant of an abusive stranger.
After he died we waited for the doctor on duty to come to see us but she was detained with an emergency and never appeared. We said the first of what were to be many goodbyes.
Before I left, I wanted to know what would happen to my husband's body. Where would it be taken? Would it lie alone in darkness or would the room be lit and softened with candles?
Nobody could say. We would have to wait for Jimmy, the hall porter, but he did not appear.
At midnight, we left reluctantly, our questions not fully answered, our only consolation that whatever about the overnight, Dave's body would return to us next day to be waked at home.
Each year almost 30,000 people die in the Republic, two-thirds in hospital despite research (2004) indicating that most would prefer to die at home.
Bridget Clark, chairwoman of Cavan General Hospital's Dying, Death and Bereavement Committee, has acknowledged the long-term implications of poor end-of-life care: "If you have a bad experience in hospital like waiting 24 hours on a trolley, hopefully it will only live with you for the duration of that time in the hospital. If a death is managed badly in any hospital service, that will be etched on the memory of those relatives forever," she says.
Part of the problem is that a family's crisis is a hospital's routine. While death and dying is all in a day's work for medical and nursing staff, it is a life-changing experience for families.
Another problem is that because the hospital system and culture is geared to curing, officialdom struggles when this cannot happen. I noticed a distinct change in my husband's consultants when it became obvious he would not get better.
There was a withdrawal, a disengagement. While the exact prognosis was not discussed, both body and vocal language were employed to distance, separate and protect the professionals from us, the patient and our feelings.
"End-of-life care in hospitals can sometimes be characterised by a series of small indignities and thoughtless acts," says Mervyn Taylor of the Irish Hospice Foundation (IHF). "But not meeting the needs of the dying at such a vital time in the life of an individual and a family can haunt relatives for the future," he says.
"Hospitals generally do not provide the sort of comfort and dignity required for end-of-life care. This demonstrates itself with relatives being told a patient's prognosis in a bustling corridor or a cupboard transformed into a makeshift consultation room," says Taylor.
"The manner of the communication itself can be a source of distress and, sadly, stories of patients dying in open wards with a television blaring in the background are true," he says.
Hopefully things are about to change. Yesterday President Mary McAleese launched IHF's Hospice Friendly Hospital programme, which aims to introduce hospice principles into hospital practice.
Focusing on four key themes: integrated care, communication, dignity and design, and patient autonomy, 18 acute and 19 community hospitals will participate in the first phase.
Mervyn Taylor is programme manager. "We want to develop a comprehensive framework of standards by 2010 which will change the overall culture for all Irish hospitals regarding death, dying and bereavement. Integrated care concerns itself with every aspect of end-of-life care from breaking bad news through to bereavement," he says.
"Integrated care is also necessary because while each death is a unique and profound event, paradoxically many crucial components of end-of-life care are universal," says Taylor.
"Whether death is expected or unexpected, hospitals need to have in place sensitive and well-thought-out systems to deal and respond," he says.
The programme builds on a two-year 2004 pilot project, Care for People Dying in Hospital, undertaken in Our Lady's Hospital, Drogheda and involving all relevant staff from consultants to hall porters. A number of innovative measures have resulted including conducting a hospital spatial audit necessary to develop a series of multifunction rooms to promote confidential consultations and privacy for dying patients and their carers.
An educational awareness programme was delivered to front-line staff who indicated their approach to dying patients would change as a result. A pioneering set of publications is being adapted for other hospitals,
A Family Handover Bag designed to replace the practice of returning a deceased person's belongings in a black plastic bag began in Drogheda and is now in use in many hospitals.
Three weeks after my husband died, I returned to his Dublin hospital to collect his belongings. They were delivered to me in the new family bag, made from green canvas. The handover of pyjamas, electric shaver and slippers was accompanied by two members of the nursing staff who came to sympathise with me and ask how I was. I wasn't great, but the fact that they cared enough to ask helped a little.