Research reveals four out of five people think palliative care can only be provided by specialist palliative care teams – and almost one third of people think palliative care is only available in a hospice or hospital.
Research published to coincide with Palliative Care Week 2017 (3rd – 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 Northern Ireland and the Republic of 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.
Claire Gray from Newtownards, Co Down, lost her three-month-old daughter Matilda in 2013 to Edward’s Syndrome.
“Throughout Matilda’s short time with us, we had support from Hospice at Home. They nursed Matilda overnight so myself and my husband, Kris, were able to get the same rest. It meant we were both refreshed at the same time so we could take Matilda out on little adventures to let her experience the duckpond and the seaside. We were able to make memories together even if it was just for a short period of time. The nurses were so caring with Matilda. Not only did they nurse her; but they sang to her and read her stories. They offered Kris and I a listening ear too as it was all emotionally overwhelming. They were there for all three of us and will always be so special to our little family,” said Claire.
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.”
Endorsing Palliative Care Week, Department of Health’s Permanent Secretary, Richard Pengelly, said: “Being diagnosed with a progressive, life-limiting condition can be devastating. Palliative care cannot change that diagnosis, but it can help people live well until the end of life, whether that is for years, months or weeks. Palliative Care Week challenges all of us to recognise the importance of good palliative care in helping people live with and manage their illness, making a real difference both for them and those who are important to them.”
Mary Hinds, Director of Nursing and Allied Health Professions at the Public Health Agency (PHA) said: “The Public Health Agency and the Health and Social Care Board, on behalf of the Northern Ireland Palliative Care Programme Board ‘Palliative Care in Partnership’ are delighted to support the messages of Palliative Care Week, which aims to address some of the fears and concerns that may surround the topic of palliative care. It is important to help people understand that a palliative care approach can be provided across all care settings including people’s own homes, often by the professionals who have been involved in the individual’s care so that their quality of life is improved and also the experience for those important to them.”
You can read more about palliative care on the All Ireland Institute of Hospice and Palliative Care’s Palliative Hub: http://aiihpc.org/palliative-hub/