NDT 4: Palliative care: Asking the questions that matter to me Bernie Michaelides Head of Intermediate Care / Lead Nurse

Palliative Care Senior Nurses Network Group 4

Background Research into palliative care continually highlights communication as one of the most vital aspects in medical care. Unfortunately evidence shows that health care professionals do not always communicate effectively. At clinic appointments, palliative care patients due to the nature of illness, tend to forget what they want to ask the Doctor/Consultant, only to remember at a later time or date resulting in the:  Patient/Carer feeling vulnerable  Patient/Carer feeling a loss of control in the palliative care process. AIIHPC ( 2015 ) Report of the Community Learning Project identified the need for a question checklist for palliative care patients/carers in preparation for going to a Doctors appointment. The recommendation stated that it should be available in both printed and online format.

Initiative Aim To develop an information resource for palliative patients and their families empowering them to ask questions specific to their individual needs. This information resource will be published in booklet format and also accessible through the AIIHPC Adult Palliative hub.

Bernie Michaelides WHSCT Lorna Nevin NHSCT Anne Marie Marley BHSCT Sister Patricia Walsh Saint Francis Hospice Joanne Crowley Kerry General Hospital Helen O’Connell Milford Care Centre Group Members

Approach Team Approach: Gantt chart devised and group allocated tasks to undertake Literature Review completed, group interested in “ Asking Questions Can Help” a resource developed by Palliative Care Australia (Clayton. J., Butow. P., & Tattersall. M. 2002) This work adapted to meet the needs of the patients/carers across Ireland

Activities Team sourced vital patient/Carer feedback on booklet from:  Voices for Care 18 th June  Milford Care Centre, Kerry Palliative Care Services, St Francis Hospice  Senior Managers for Community Development and Patient and Public Interest groups (PPI) across the 5 Trusts in Northern Ireland  Chest Heart and Stroke Association, Northern Ireland Feedback enabled amendments to be made Booklet approved for correct grammar and plain english Booklet prepared for graphic design and printing

The Finished Product

Areas included Palliative Care Services and Teams Living with my Illness and Treatments Support End of Life Issues

Key Challenges Trying to network with each other across Ireland, at agreed times that suited the group Competing work demands versus project work Addressing the comprehensiveness of this subject to capture the depth and breath of Palliative care across Island of Ireland.

Highlights “What a really useful tool to have, well done to all! ” “I really like the title. 'Asking the Questions that Matter to Me' gives permission to do just that!” “The list of questions seems really comprehensive and the space for additional questions gives even more permission to ask the questions that matter.” “This is such an empowering tool. Knowing the questions to ask and being able to ask the ones that matter can make such a difference to the care that a person receives. This impacts not only on the quality of life for the person with the illness but also on his/her loved ones.” “I hope this is useful, it is an honour and a privilege to be involved in this work, and I look forward to seeing the final document” Elizabeth Fitzgerald ( Voices 4 Care)

Reflections on Journey Getting to know each other with different cultures/backgrounds/personalities In developing this booklet for the patient, the collaboration and positive support/help the team received from colleagues and patient/Carer groups Looking at the needs from the patient/carer perspective, not the professionals Time management- balancing work/project/home life. Invaluable supportive roles from Cathleen and Gareth (AllHPC)

Next Steps Pay our bills!! Ensure the booklet is downloaded onto the AIIHPC Palliative Adult Hub Devise a plan to distribute the booklets across the island of Ireland Celebrate our Team’s success!

Budget Plan ExpenseCostBudget remaining Design with independent designer £1, 200 (€ ) (No VAT as UK based) € Printing of booklets (1,000 copies) €1, 464 inc VAT € Photo Costs: €47.95 inc VAT € TOTAL EXPENDITURE In kind contribution AIIHPC – IT development €3,

Final Thought “If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than five minutes.” Albert Einstein

Thank you Any Questions?