The type of palliative care services available to people varies greatly depending on where they live, a new report has found.
The availability of these services also differs greatly, with some available 24 hours a day, seven days a week, and others only available during office hours.
The report was published by Trinity College Dublin (TCD) and the Economic and Social Research Institute (ESRI). It focused on three regions in Ireland - the HSE Midlands area (Laois, Offaly, Longford and Westmeath), the HSE Mid West area (Clare, Limerick and north Tipperary) and the HSE South East area (South Tipperary, Waterford and Wexford).
Palliative care is aimed at people whose conditions cannot be cured. The goal is to provide the best quality of life in the time they have left, which can be anything from days to years.
The report looked at specialist palliative care (SPC) services available in the three regions and found that not all areas have access to SPC inpatient units, specialist day care centres, SPC outpatient clinics or hospice care.
The availability of these services also differed greatly depending on the location, from 24 hours a day, to office hours only. The availability of multidisciplinary teams and home help also differed depending on the location.
Where community SPC or hospice care was available, most people said it was easy to access. However, accessing a bed in a hospital when required was not as easy, with 75% of people finding it ‘fairly difficult' or ‘very difficult' to access such care. This was particularly the case in the Mid West and Midlands regions.
In all of the areas assessed, people tended to be more satisfied with the quality of care they received from community SPC teams, rather than hospital teams. In fact, the report noted that the quality of inpatient hospital care was lower overall, particularly when it came to emotional support for the families involved.
The report also found that the carers of older adults requiring palliative care are often other older adults, such as their spouse. When the spouse/partner is the main informal carer, they usually provide over 60% of the informal care, with adult children playing ‘an important but smaller role'.
The majority of all carers in all three regions were women aged between 35 and 64.
"It is interesting to note how much care of older dying people is provided by other older people, especially spouses and partners. We need to think of older people as a resource and as providers of services, as well as people who need care. It is also important to understand that the provision of formal care does not lighten the load of informal carers, but does allow them to use their time to address the wider needs of their relative," commented lead researcher, Prof Charles Normand, of TCD.
The report also looked at the issue of people dying in their preferred location. It noted that this can change over the course of an illness. Six months prior to death, most people want to die at home, however this reduces during the last week of life, ‘most likely reflecting an individual's increasing level of need and their recognition of this and wish not to place this burden on family'.
The report found that 75% of people died in the place they, or their carers, believed they wanted to die. People were more likely to die in their preferred location if SPC services were more developed.
Meanwhile, despite the variations in the kinds of services being offered, the cost of palliative care in each region was relatively similar.
Speaking about the report, Prof Normand emphasised the importance of having well-developed SPC services.
"It has long been recognised that palliative care is not only end of life care. Where services are more developed, this allows earlier referral for specialised support, and the skills of palliative care can be provided over a longer period. Where services are less well developed, they are only generally able to address needs nearer to the end of life," he said.
The report can be viewed here