The survey, undertaken by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), showed that people want to discuss and plan for the future – 64% of respondents said that ‘planning for the future’ was the biggest practical worry in their experience.
When asked about what needs were least well met in their experience, 50% said their ‘emotional and psychological needs’.
The need for better and clearer communication was also highlighted – 33% said that in their experience, they received too little information too late. Promisingly 50% said they received information clearly and sensitively, but others felt the issues were either avoided or jargon was used.
When asked what they would most like to have been better in their experience, 39% of the respondents said coordination of care or treatment, 21% said better emotional support and 9% said better information.
44% of respondents said family were involved and respected, 19% said family were put under too much pressure and 18% said family were forgotten about or excluded.
Palliative Care Week
The findings are being launched today (6 October 2014) as part of Palliative Care Week, which is taking place this week across the Republic of Ireland and Northern Ireland.
HSE National Director in charge of palliative care, Ian Carter, welcomed the findings as an opportunity to improve user experiences of palliative care in Ireland.
“This survey provides an invaluable benchmark of the experience of people who have received palliative care. It is clear that supporting people to plan for the future, meeting their emotional needs and delivering the right information at the right time are key areas to develop further,” he said.
AIIHPC Director, Paddie Blaney, said that: “Greater public awareness of what palliative care is, and employing a palliative care approach more widely among health and social care professionals, will help to ensure that these issues can be addressed.”
Ms Blaney called for greater understanding that a palliative care approach is beneficial for anyone with a non-curable illness, regardless of age or condition, and also supports their family, friends and carers both during an illness and afterwards.
“Palliative care is about quality of life. For the very best outcomes, palliative care starts as early as possible and is suitable for a number of years, not just the weeks and days at the end of life,” she said.
For more information about Palliative Care Week see www.palliativecareweek.com or search Twitter for #pallcareweek
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