NDT 4: Palliative care: Asking the questions that matter

to meBernie Michaelides

Head of Intermediate Care / Lead Nurse

Palliative Care Asking the Questions that Matter to Me

Palliative Care Senior Nurses Network

Group 4

BackgroundResearch 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

ApproachTeam 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

ActivitiesTeam sourced vital patient/Carer feedback on booklet from:

Voices for Care 18th June 2015 . 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 ChallengesTrying 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/personalitiesIn 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 HubDevise a plan to distribute the booklets

across the island of IrelandCelebrate our Team’s success!

Budget PlanExpense Cost Budget remaining

Design with independent designer

£1, 200 (€1616.46)

(No VAT as UK based) 

€1383.54

Printing of booklets (1,000 copies)

€1, 464 inc VAT  

€-80.46

Photo Costs: €47.95 inc VAT

 

€-148.41

TOTAL EXPENDITURE

In kind contributionAIIHPC – IT development

€3, 128.41

 

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?