Two thirds of palliative care users say ‘planning for the future’ their biggest worry
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.
Half of palliative care users (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 which was launched yesterday.
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. The survey includes the experiences of 528 palliative care service users and carers from across the island (109 in Northern Ireland and 419 in the Republic of 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 Public Health Agency (PHA) in Northern Ireland and the HSE in the Republic of 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.
PHA Allied Health Professions Consultant and Regional Palliative Care Lead, Corrina Grimes said: “The findings and recommendations from this work will be incorporated into the Regional Palliative Care Programme Palliative Care in Partnership so that we can improve services and experiences of those with palliative and end of life care needs, their family and communities. The PHA, Health and Social Care Board and other stakeholders will continue to work in collaboration with the All Ireland Institute of Hospice and Palliative Care in the current and future all island work programme.”
Commenting on the report, Health Minister Michelle O’Neill said: “This report presents a powerful picture of both the positive experiences and concerns shared by people who are living with an advanced progressive illness across the island of Ireland. It clearly shows the difference that good quality palliative and end of life care makes to people, not just in helping to manage their physical symptoms, but also in providing emotional, psychological and social support for them and their families and carers. I believe the experiences of the many voices which resonate through this report, and what we can learn from them, will reinforce our commitment to providing quality palliative and end of life care for those who need it”.
The full Let’s Talk About report can be viewed at: http://aiihpc.org/policy-practice/lets-talk-about/lets-talk-about-final-report/
For comprehensive information about Palliative Care see the All Ireland Gateway to Palliative Care Information at: http://www.thepalliativehub.com
Pictured: Professor Philip Larkin, AIIHPC Chair; Mrs Eithne Frost, Voices4Care member attending AIIHPC Council of Partners; Ms Karen Charnley, Head of AIIHPC.
