‘When I needed somebody, there was nobody there.”
This was how Wicklow woman Moira O'Hara felt as she struggled to meet the ever increasing nursing needs of her husband, Martin, who passed away last year.
Moira says Martin had a lifelong aversion to hospitals and when he was diagnosed with cancer had to endure long uncomfortable car journeys from their home in Wicklow to Dublin for treatment.
As his condition worsened the journeys increasingly took their toll on both of them.
“The only thing he stipulated . . . was that he would love to die at home,” Moira says.
“He was a great nature lover . . . he just loved to sit outside and watch the wildlife . . . he said, ‘if I can die here I will be happy enough’.
About a month before he died, Martin suffered a stroke, which made caring for him even more difficult.
“He was always worried about the strain for me having to do everything for him, especially after he had the stroke. I literally had to do everything for him, I am not exactly young myself.”
Yet apart from some support from the community nursing team, Moira was Martin’s main carer and she remained dedicated to her husband who by then was totally reliant on her for his every need.
This included caring for him throughout the night and seeing to all his personal hygiene needs.
Moira says she discussed inpatient hospice care with her husband. However, the nearest one was in Dublin – which would have made visiting arduous. Therefore, it was decided that she would continue to nurse him at home, which was at times very difficult.
According to Moira, if there had been a hospice nearer to home “things would have been so different” as it would have offered the possibility of respite care.
“There were times when I had had enough . . . I was very tired – I wasn’t sleeping, obviously – and I have my own health problems as well.
“There were just times when I used to say to Martin ‘I wish there was more I could do, and I am doing my best’ . . . if I could have got respite in a local hospice that would have been marvellous and would have been close enough for me to visit whenever I wanted.”
Sadly, Moira is not alone. A recent report from the Irish Hospice Foundation (IHF) found that a lack of equity of access to inpatient hospice beds across the State means that approximately 2,470 patients are denied access to hospice beds every year.
Lack of beds
More than a decade ago a report from the National Advisory Committee on Palliative Care recommended that there should be one hospice bed per 10,000 of the population.
However, according to the latest report from the IHF, just “just two regions – the midwest and northwest – come close to fulfilling government policy”.
The report found that a number of regions of the country – including the northeast (comprising Louth, Meath, Cavan, Monaghan) and the southeast (Waterford, Wexford, Kilkenny and Carlow) – as well as Wicklow, Mayo, and Kerry – have no hospice inpatient unit.
According to the report, “while 67 per cent of Irish people express a preference to die at home, in reality only 26 per cent of the circa 28,000 deaths that occur in Ireland each year take place in the home, and 43 per cent occur in hospital”.
“In contrast, 40 per cent of all patients cared for by hospice home care teams die at home.”
The report revealed: “The midwest and northwest have very good access to hospice services and much lower percentages of cancer patients dying in acute hospitals.
“Patients approaching death in the ‘resource-poor’ regions of the southeast, midlands and northeast suffer significant inequity in access to hospice services, with a consequential higher proportion of cancer deaths in acute hospitals.”
There is just one hospice in the midlands with four inpatient beds for the entire region.
The South Westmeath Hospice is attached to St Vincent's Hospital in Athlone and, while it is managed and run by the HSE, the vast majority of funds to build the unit came from private fundraising.
According to Gráinne O’ Neill, secretary with the South Westmeath Hospice, the unit is “incredibly important” to the region.
In essence the IHF report reveals that there is a direct correlation between the number of people who are facilitated in their wish to die at home and the number of hospice beds available in their community. Those without access to inpatient hospice care are much more likely to die in an acute hospital.
According to the IHF report, “specialist palliative care services offer a support system to other care providers” and “provide a rounded, holistic service to patients and their families which simply cannot be provided in an acute hospital setting”.
The report notes that 50 per cent of patients who go into a hospice do so for control of their symptoms or respite and are then discharged home.
According to Eugene Murray, author of the report and former chief executive of the IHF, the lack of local inpatient hospice care means many people at the end of life die in the inappropriate surrounding of an acute hospital, when their preference may have been to die at home.
Without access to inpatient hospice care, Murray says, there is no alternative for patients who develop acute symptoms but to be admitted to hospital.
“Carers feel ill-equipped to look after them in the home environment and they need specialist help.
“Now normally . . . the hospice home care team would refer the patient to a hospice until their symptoms are brought under control and then they go home again.
“If there is no hospice bed, they end up in an acute hospital.
“Some end up in an A&E department and die in an A&E department, and others end up in hospital.”
In the latter scenario, according to Murray, when symptoms are brought under control many patients are reluctant to be discharged home, as they know that the next crisis will mean another emergency department admission.
“If there is an integrated palliative care service where they know that if there is a crisis they will be accepted into the hospice, they are much more willing to go home,” he says.
Palliative care is a multifaceted service which provides care for people where they want it – and for most people that is at home, says Murray.
“We are not trying to drive people into hospice beds – we just want them to be there for people who need them.
“In the 2013 HSE Service Plan there is a commitment that 92 per cent of all patients who are referred to hospice beds will be admitted within one week.
“Now that can’t happen in those counties where those beds don’t exist, so there is a significant issue of equity here and a significant issue of the HSE delivering on its own commitments.
"It can't have a commitment in its service plan that 92 per cent are admitted within seven days if there are no beds."
In the last weeks of Martin O'Hara's life the palliative care team came to visit him at home. The first time a nurse stayed overnight was the night he unexpectedly passed away.
Martin died the day after he and Moira celebrated their 26th wedding anniversary at home, surrounded by his family. By chance the whole family were together to celebrate the anniversary.
“So we were all here with him when he died. We hadn’t expected it. It was very sudden in the end but we were all here with him, which was lovely,” Moira says
While Martin received his wish to die at home his wife feels that at times, she lacked the support she needed to help him fulfil that wish.
“When you love somebody and you see them suffering so much you need support and, although there was support from the palliative team, I felt that we could have done with even more support,” she says.