Aboriginal stories about approaching the end of life: patient voices being heard

Transcription

1 Aboriginal stories about approaching the end of life: patient voices being heard Kay Cope Clinical Services Manager ISLHD Palliative Care Annie Fanning Clinical Nurse Consultant Shoalhaven Community Palliative Care N November 2015

2 In Our Care Into Your Hands Overview Set the scene All starts with a big idea Developing the bundle with an engaged team What went right / What went wrong Learning from stories

3 Set the scene Shoalhaven River on beautiful south coast of NSW at Nowra from Berry to Milton/Ulladulla 4,500 Aboriginal people (4.7% of population) Strong, active Aboriginal community Grand Pacific Health (ISML), AMS, FACS, ALO Waminda (Sth Coast Women s Health & Welfare Aboriginal Corporation) Illaroo (one of two Aboriginal Aged Care facilities in NSW; with community services) Aunty Jean s Wellness Program

4 Big idea With such a large Aboriginal population, why don t they access Specialist Palliative Care? Evidence: Very few referrals; fewer admissions; generalist community nurses for dressings maybe; can feel on their own Literature: BEACH study ( )* 1:1,000 episodes of care for GPs were palliative care. None of these were indigenous. Can t do it alone CNC and ALO put the call out What are you interested in? *Aust Institute Hlth & Welfare, AIHW

5 Engaged team and perseverance Aboriginal Palliative Care Healthy Partnerships committee: ISLHD Palliative Care CNC/CNE/CSM Aged Care CNC Aboriginal Hlth Liaison Officers Shoalhaven Hospital/Cancer Care Grand Pacific Health (previously known as ISLM) Aboriginal Health outreach team Aboriginal Community Controlled Orgs

6 Yarn-Up ISLHD first Aboriginal specific Yarn-Up Day on Advance Care Planning (2014) Services and community hungry for information Acknowledgement of cumulative grief and enormous loss in the room Agreement that community needed more information about support services Started work on developing patient story booklet Based on HNELHD s Nooka Murrook booklet Grief and Loss Yarn Up (2015) Plus launch of booklet

7 Executive sponsorship /concept ISLHD and ISML Senior Management support

8 Engaged team, engaged community Skill sharing everyone had a role to play Where would the funding come from? Medicare Local project funding Who would we ask to tell their story? Aboriginal committee members approached elders and known past and present clients Consent forms and guaranteed participant ownership of final story Who would do interviews a write them up? Media experience + Aboriginal support worker for cultural safety What Aboriginal artwork could we use?

9 Artwork- previously commissioned

10 Engaged services Maze of approvals Negotiate with story tellers Negotiate with organisational managers Ensure text is interpreted the way the story teller intended but without distressing readers

11 In Our Care, Into Your Hands

12 In Our Care, Into Your Hands From the No regrets story: Violet (AHLO) organised a couple of family conferences so that all the family could understand what was going to happen with mum and dad s care. It was really good for everyone to be involved. Another important thing I learned was that Palliative Care isn t just about David Berry Hospital (Karinya). It s about the services that can be provided. The OT spoke to us about organising equipment, and they spoke to Illaroo Aboriginal Corporation about getting a hospital bed for dad at home.

13 In Our Care, Into Your Hands From John s story: Now the palliative care team visit me. I like them to visit because it is good to have someone to talk to. Sometimes I can go for days without having anyone to talk to.

14 In Our Care, Into Your Hands From Making his own Decisions : He felt comfortable about going there (Karinya Palliative Care Unit) people have the right to decide where they want to die, and if they want to die at home the community palliative care team can help and so can the hospital. They can get your medications sorted out and help you be at home again if that s what you want.

15 In Our Care, Into Your Hands From Jennifer s Memories: Living with sickness is hard. I have lost a lot of family members. The sadness of that never leaves me. Every morning when I wake up I think I m still breathin.

16 In Our Care, Into Your Hands From Ray s Gone Fishing story: The solicitor told me about writing out what I want (an Advance Care Directive) when I got my Enduring Power of Attorney done.basically it says I don t want to be resuscitated when my heart stops.

17 What went right and wrong Positives: The sharing of stories was empowering for the person/family Collaboration between services Community ownership booklet now available through GPs, Hospitals, CHC, CD services, ALOs, AMS Negatives: The need to ensure the negatives in stories are not harmful (or misinterpreted) Evaluation?? (comments and focus groups)

18 Would we do it again? In a flash! (Invite you to come and see poster and read booklet)

19 Any questions? Thankyou Kay and Annie