Pictured with the Let’s Talk About report are Professor Philip Larkin, AIIHPC Chair; Mrs Eithne Frost, Voices4Care member attending AIIHPC Council of Partners; Ms Karen Charnley, Head of AIIHPC.
More than two thirds (68%) of people with palliative care needs have said that ‘planning for the future’ is their biggest worry – in a survey of palliative care experiences across the island of Ireland.
52% said they felt frustrated or helpless. 51% said their emotional and psychological needs were not met and 42% wanted better co-ordination of care or treatment.
The findings are contained in the Let’s Talk About Palliative Care Survey Report launched this week.
The survey was coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) and asked people to talk about their positive or negative experiences of care.
It includes the experiences of 528 palliative care service users and carers from across the island (419 in the Republic of Ireland and 109 in Northern Ireland).
AIIHPC Head of Institute Karen Charnley said: “The survey findings challenge those providing care to respond in ways which best support people and their families at this time in their lives. It also challenges wider society to talk and think more about palliative and end of life care.”
“The survey reflected many positive experiences of palliative care as well as highlighting where we can improve. The survey found that 37% said they received too little information too late, while 22% said that sensitive issues were avoided completely. However, 48% felt communicated with clearly or sensitively and 34% experienced information being communicated timely or appropriately.
“The research also highlighted the need to build the competences and communications skills of healthcare professionals to support them and those they care for to talk openly and sensitively about care. This is particularly important for those professionals who people with palliative care needs most regularly come into contact with, including GPs, nurses and medical consultants.”
The study also showed that avoidance of talking about the issues, or information given too little or too late increases frustration and helplessness.
Conversely, clear and sensitive communication increases the feeling of being supported.
The survey was jointly commissioned by the HSE in the Republic of Ireland and Public Health Agency (PHA) in Northern Ireland.
Anne Molloy of the Institute’s service user, carer, community group, Voices4Care, said: “The survey shows that we must encourage people to exercise personal choice through the timely provision of accessible and appropriate information on palliative and end of life care.”
It also highlighted the importance of the involvement of family and friends. Ms. Molloy said: “50% of people felt that family and friends were involved or respected; 20% felt family and friends were forgotten about or excluded and 18% felt they were put under too much pressure.”
In conclusion Karen Charnley said the survey emphasised the importance of raising awareness of palliative care and the benefits of the early integration of the palliative care approach in the care of people with life limiting conditions. In addition, helping society to normalise talking about and planning for end of life care is needed.
HSE Director of Advocacy, Greg Price said: “The findings of this research will be reviewed to inform public policy and services for palliative and end of life care in Ireland. We can improve services by aligning them closer to the expressed needs and wishes of patients, their carers and families.”
The full Let’s Talk About report can be viewed at: http://aiihpc.org/policy-practice/lets-talk-about/lets-talk-about-final-report/
*A talk on Palliative Care is to take place at Lettermacaward Church of Ireland on Friday, June 17th at 8pm.Palliative Care – What It Really Means. Admission is free.
