The initial findings of an audit by Hospice Friendly Hospitals has found end-of-life care is not good enough, writes PAMELA DUNCAN
IT WAS a bitterly cold night in January when Catriona Crowe received word that her partner, Padraig O’Faolain, had suddenly fallen ill and had been brought to a major Dublin hospital.
He was admitted to ICU where he was initially said to be recovering. However, about two hours later he took a turn for the worse. As staff attempted to resuscitate her partner, Crowe was put into a pokey room. Outside, a drunken man and woman fell around the place, shouting. This, Crowe recollects, was likely the last sound that her dying partner heard.
A young doctor entered the office and told her her partner was dead. She was brought to the room in which hospital staff had tried to resuscitate him. Eventually a priest, who she had not asked for, appeared by her side. He kept referring to her as O’Faolain’s daughter – “they hadn’t even briefed him”, she recalls sadly.
Two orderlies came to bring his body to the mortuary, laughing and joking as they brought his remains away. Almost a year after the experience Crowe is still in mourning, but she is also deeply traumatised by the lack of “ordinary human decency” which surrounded what was already a harrowing experience.
“Nobody there had any training as to how to deal with someone who is suddenly bereaved. Hospitals don’t do death,” she says. “They see it as a failure, not a natural thing that happens.”
The Hospice Friendly Hospitals (HFH) programme is currently undertaking a national audit on end-of-life care in hospitals in Ireland. It is the first such audit of its kind in the country and the most sophisticated baseline survey to be undertaken in Europe. The first phase included 24 acute and 19 community hospitals.
HFH manager Mervyn Taylor says the initial results of this first-phase report indicate that “end-of-life care in Irish hospitals is probably as good as elsewhere, but the results suggest, it’s not good enough”.
Privacy in the latter stages of life is one of the things highlighted in the initial findings of the first phase of the programme.
Taylor notes that, while nursing staff go to a substantial amount of effort to ensure dying people are afforded some privacy in their final hours, in practice privacy often falls short.
About 56 per cent of deaths occur in wards where five or six other people are present. This is partially due to the small number of single rooms available.
“Bear in mind the distance between beds is very, very close and curtains around them don’t provide any privacy,” he says, adding that this can be incredibly harrowing for both the patient and their relatives. What’s more, it affords no privacy to other patients in the ward.
Another major finding of the report is that, while most people wish to die at home, the vast majority are dying in hospitals. Yet in 20 per cent of cases the diagnosis of death in Irish hospitals occurs five to six days before death occurs.
“If a fifth of people in their opinion could have died outside of the hospital, then that’s something to think about – why are people, if we know they are dying, why are they staying there so long?” Taylor asks.
“Nearly a quarter of people are dying alone in acute hospitals,” Taylor says, adding that while this figure was lower than in other comparative countries, it is not an acceptable statistic.
The initial report has also thrown up other questions surrounding communication with patients. Taylor notes that the audit indicates that there is a tendency for staff to speak to the relatives of patients instead of the patients themselves. While there is little choice in some cases, it added that “doctors and nurses’ primary responsibility is to the patient”.
Taylor says there is a need to prompt people into thinking about an appropriate pathway of care in their case and that this might be best done through advanced care planning.
“If you knew what somebody wanted and you had staff to act on it, and somebody has clearly documented the fact that they don’t want to be resuscitated or they don’t want to die in an acute hospital, then that needs to be respected.”
There are also significant questions surrounding the level of pain suffered by patients which, the report shows, doctors and nurses disagreed on 50 per cent of the time.
Taylor says that this further reflects a tendency among staff to look for “curative” rather than “palliative” care.
He adds that there is an unwillingness among staff to accept that they “don’t have to continue to treat this person as if they’re going to be cured”. He tells of a staff member who, during the pilot project, wrote an anonymous note to the audit manager after they had taken blood from an elderly woman who said, “I’m dying. Why do I need to do this?”
However, others caution against simply applying palliative care solutions resulting in a cohort effect.
Prof Des O’Neill, consultant geriatrician at Tallaght Hospital, welcomes the HFH audit as “hugely important and worthwhile”, but says that other factors also need to be taken into account.
“It’s really important to see that end-of-life care is not just about palliative care,” he says, adding that there are certain situations where “it can be very hard to work out the difference between the very, very sick and those who are dying.
“We have to recognise that the majority of people at the end of life are older and that, as a result, we need a combination of gerontological, dementia and palliative care skills,” O’Neill says, adding that he felt that the former skills were not sufficiently incorporated into the report.
At the end of the audit process, a confidential report will be received by participating hospitals while a national report will also be published. A framework, which it is hoped will be put in place as a result of the audit, will take on board integrated care, personal skills, physical environment and ethical approach in relation to end-of-life care.
Taylor hopes that, once completed, the audit will help significantly improve end-of-life care in Irish hospitals. “People need to start addressing end-of-life care as central to the business of hospitals rather than just an unfortunate by-product . . . it is a core part of life, therefore, it is a core part of hospitals.
“It’s not an event, it’s a process . . . there’s no exact science in this. There’s just better ways of doing it.”
Expressions of interest for phase 2 of the Hospice Friendly Hospitals Programme are now being invited from interested hospitals, organisations or services. Contact the Irish Hospice Foundation for further information. The closing date for submissions is February 5th, 2010
