168 people in the last years of life, current and former carers, and health and social care professionals participated in a programme to identify the top 10 research priorities for the Island of Ireland.
Top of the list was improving ‘out of hours’ care including symptom management, counselling and advice, GP visits and 24 hour support for patients, carers and families.
The second priority was identifying the best ways of providing care in the patient’s home and how home care can be maintained for as long as possible while the third priority concerned pain and symptom relief and which drugs are best in terms of side-effects, such as drowsiness.
The project was developed in Ireland by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) following the UK and Ireland-wide Palliative and end of life care Priority Setting Partnership (PeolcPSP), initiated by Marie Curie (the UKs leading charity for people with any terminal illness) and independently overseen by the James Lind Alliance.
AIIHPC extracted the information for Ireland from the overall study and held a number of workshops to develop a priority list specifically for the Island. The top three priorities were similar for Ireland and the UK, with some variance thereafter. Also included in the priorities are:
· What are the best ways for healthcare professionals to tell patients, carers and families that a patients illness is terminal and also to explain the dying process compassionately and honestly
· What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences
· What are the best ways to make sure there is continuity for patients at the end of life
· What are the best ways to support children and young people when someone close to them is dying or dead.
AIIHPC Director Paddie Blaney said the Institute would use the findings to inform its research and patient focused activities. “This is a ground-breaking body of work which is working from the patient and carer back to the researcher. Supporting and amplifying the patient and carer voice is a core part of AIIHPC’s work. The Institute will be building on this to refine priorities and actions required for palliative care research across the island of Ireland.”
Marie Curie Medical Director Dr. Bill Noble said: “We are grateful to AIIHPC for taking the PeolcPSP findings and developing them specifically for Ireland.”
The top 10 research priorities for palliative and end of life care for the island of Ireland are:
1. What are the best ways of providing palliative care outside of ‘working hours’ to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families?
2. What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good co-ordination of services affect this?
3. What are the best ways to make sure that palliative care patients receive adequate pain and symptom relief and which drugs for pain management are best in terms of side-effects, such as drowsiness?
4. What are the best ways for healthcare professionals to tell patients, carers and families that a patient’s illness is terminal and also explain the dying process compassionately and honestly? Can literature, including leaflets, be helpful? Who is the best person to provide this information and communication?
5. What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?
6. What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case-coordinator improve this process?
7. What are the best ways to support children and young people when someone close to them is dying or has died? This includes communicating with them about the diagnosis and dying process, enabling them to talk about their experience and providing bereavement support.
8. What information and training do carers and families need to provide the best care for their loved one who is dying?
9. What are the best ways to begin and deliver palliative care for patients with non-cancer diseases (such as COPD, heart failure, MND, AIDS, multiple sclerosis, Crohn’s disease and stroke)?
10. Are hospices, hospitals and care homes providing adequate staff training to deliver specialist palliative care, and to what extent does funding affect this? How can high quality trained staff be ensured no matter where the care is being delivered?