Research published to coincide with Palliative Care Week 2017 (3rd to 9th September) reveals four out of five people think palliative care can only be provided by specialist palliative care teams. It also found that almost one third of people think palliative care is only available in a hospice or hospital. Palliative Care Week is facilitated by All Ireland Institute of Hospice and Palliative Care (AIIHPC) across the Republic of Ireland and Northern Ireland.
Karen Charnley, AIIHPC Head of Institute, said: “Hospices and hospitals are key for the provision of palliative care, especially for people with complex needs, but many people will receive palliative care within their own community. Palliative Care is provided by a range of professionals supporting the person, whether they are at home, in a nursing home, hospital or hospice.”
Dr Bridget Johnston of Trinity College Dublin carried out the research as part of a project supported by AIIHPC. Interviews were carried out with 75 patients accessing specialist palliative care services and 69 caregivers.
“This research found that misperceptions about palliative care are common among people receiving this care and caregivers. Four out of five people assumed that palliative care can only be offered by specialist teams and this was consistent for both patients receiving care and for caregivers. It was also interesting to find that almost one third of people believe palliative care is only available in a hospice or hospital. This shows there’s still important work to be done to increase people’s understanding of palliative care, so that they are able to make informed choices about care,” said Dr Johnston.
The research also found that eight out of ten people agreed palliative care was about quality of life and that it offers support to family and friends.
36-year-old Evelyn Wakefield from Birr in Co. Offaly was diagnosed with stage four metastatic breast cancer in 2014. When she was contacted by a palliative care nurse, she initially didn’t want to see her.
“I felt if I brought the palliative care nurse in, I was facing death and I wasn’t ready for that. We talked and I was surprised by the suggestions she gave me to give me a better quality of life. I very quickly realised what palliative care was and that the nurse was there to give me the best quality of life I could possibly have and I’ve succeeded. My perception has obviously changed because I’m on the receiving end of palliative care and I now understand what it is but there are people out there that are still afraid when it’s mentioned. What I’d say to them is take all the support you can get. It helps greatly and I now have a better quality of life with my family.”
Karen Charnley continued: “Our aim for Palliative Care Week is to encourage people to think about their understanding of palliative care and to encourage them not to be afraid to ask their GP or any other healthcare professional if palliative care could help them or someone they love. People tend to associate palliative care being for people with advanced cancer but it’s equally important if you’re living with advanced heart or lung disease, kidney failure and other conditions such as motor neurone disease or dementia.”
Jim Daly T.D., Minister of State for Mental Health and Older People, is supporting Palliative Care Week. Minister Daly said: “I was delighted to hear about Palliative Care Week and the work of AIIHPC during a visit to Marymount University Hospital & Hospice, Cork. It is important for people to be aware of the support that is available to make the most of life when they have a live-limiting illness. Through our National Clinical Programme for Palliative Care, and by supporting Palliative Care Week, our aim is to increase awareness and understanding of palliative care, and support those who need this care.”
Sheilagh Reaper Reynolds, HSE Lead for Palliative Care, said: “Palliative care services aim to meet the physical, social, emotional and spiritual needs of patients and carers facing progressive illness that may limit or shorten their lives. People can sometimes have a fear of palliative care and the Palliative Care Week helps us to explain how palliative services can improve a person’s quality of life throughout the course of their illness.”