Future planning biggest worry for terminally ill, survey finds

Two-thirds of people who are terminally ill say planning for the future is their biggest worry, according to a survey of people receiving palliative care.

Half of those surveyed said they felt frustrated or helpless, and their emotional and psychological needs were not being met, while 42 per cent wanted better coordination of care or treatment.

One in three of those surveyed felt they received too little palliative care information, too late, while 22 per cent said sensitive issues were avoided completely.

The findings are contained in a report based on a survey of over 500 people with palliative care needs on the island of Ireland.

Fifty per cent of people felt family and friends were involved or respected, 20 per cent felt they were forgotten about or excluded and 18 per cent said they were put under too much pressure.

"The 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," said Karen Charnley, head of the All Ireland Institute of Hospice and Palliative Care.

“It 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 bout 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 HSE, which commissioned the study along with the Public Health Agency in Northern Ireland, said the findings would be reviewed to inform public policy.