Survey highlights planning, emotional, and communication needs of Palliative Care users

A need for a greater focus on planning, emotional care, and clear communication has been highlighted in a new survey of Palliative Care users. 

The findings are contained in a study of experiences of Palliative Care among patients, carers and families across the island of Ireland undertaken by the All Ireland Institute of Hospice and Palliative Care (AIIHPC).

The survey 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% 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.

The findings of the first phase ‘Let’s Talk About’ survey are being launched today (Monday, October 6th) as part of Palliative Care Week, which takes place until next Saturday across the Republic of Ireland and Northern Ireland.

Public Health Agency (PHA), Allied Health Professional Consultant, Corrina Grimes welcomed the survey findings as an opportunity to improve user experiences of Palliative Care in Northern Ireland.

“This survey provides an invaluable benchmark of the experience of people who have palliative care needs. 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. We would also encourage people to continue to share their experience, as the survey remains open until January 2015.”

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.

See www.palliativecareweek.com for more information.