More than two thirds of palliative care users across Ireland have admitted that ‘planning for the future’ is their biggest worry.
Half of the people who took part in the new All-Ireland said they felt frustrated or helpless. A further 51 per cent said their emotional and psychological needs were not met and 42 per cent wanted better co-ordination of care or treatment.
The findings are contained in the Let’s Talk About Palliative Care Survey Report
The survey was coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC). It 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; 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 per cent said they received too little information too late, while 22 per cent said that sensitive issues were avoided completely. However, 48 per cent felt communicated with clearly or sensitively and 34 per cent 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 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 per cent of people felt that family and friends were involved or respected; 20 per cent felt family and friends were forgotten about or excluded and 18% felt they were put under too much pressure.”
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.”
Irish Hospice Foundation chief Sharon Foley said: “The Irish Hospice Foundation (IHF) would like to congratulate the All Ireland Institute of Hospice and Palliative Care (AIIHPC) for co-ordinating this valuable research and the HSE and the Public Health Agency in Northern Ireland for commissioning it.
“The IHF believes the survey is further evidence of the need for state support for their flagship Think Ahead programme.”
Think Ahead is a public awareness initiative which was launched by An Taoiseach Enda Kenny in 2011.
Ms Foley said: “The Think Ahead programme promotes the type of thinking and planning for end of life called for by the Irish public. Using the Think Ahead tool allows people to record their care preferences, record information regarding their legal and financial affairs and set down preferences in the event of death – but done at a time when they are well. The usefulness and importance of the Think Ahead programme has become even more apparent with the passing of the Assisted Decision Making (Capacity) Bill, enacted in December 2015.
“As a charity we have brought the project to a high level of awareness in Irish society with philanthropic funding. However, at this stage it needs continued funding from the state to become embedded as a key citizen-led support for planning and thinking about end of life.”
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a partnership of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC is dedicated to improving hospice and palliative care by enhancing capacity, developing knowledge, promoting learning, influencing policy and shaping practice.
For comprehensive information about Palliative Care see the All Ireland Gateway to Palliative Care Information at: http://www.thepalliativehub.com
AIIHPC
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a partnership of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC is dedicated to improving hospice and palliative care by enhancing capacity, developing knowledge, promoting learning, influencing policy and shaping practice.
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