Kerri-Anne Dooley: Project Manager Julie Cheney: Project Officer

Transcription

1 Kerri-Anne Dooley: Project Manager Julie Cheney: Project Officer

2 The Long Goodbye an overview DoHA funding via the Local Palliative Care Grants round 5 12 months, extended to 18 months A consortium partnership with Spiritus, Alzheimer s Australia and Caritas Care Also utilising consultation services of St Vincent's Hospital Brisbane, QUT DTSC. The project targeted both residential aged care facilities and community care services using the close proximity of services between the 2 major partners.

3 The Long Goodbye an overview The project, at its base, aims to enhance awareness that Palliative Care is relevant to the life-limiting state of Dementia. Then to improve end of life care, Advance Care Planning (ACP) and service delivery for people with dementia who are cared for in our services. We aimed to enable staff to have increased knowledge, confidence and competence in recognising needs and delivering care for people with dementia from a palliative approach. We wanted to encourage people to ask the question: What would they have wanted?

4 Advance Care Planning (ACP) Answering the questions: If you became so very unwell that you were unable to speak for yourself, who would speak for you? What type of cares would you expect at your end of life? Talking about dying isn t easy, especially for those living with dementia. Assumptions and corrections: about dementia, palliation, ACP and carer expectations.

5 Starting out SET UP : Steering committee, 2 HREC s Two strategies: 1. Workforce development through education workshops, and 2. Roll out of Advance Care Planning program. Literature review Documentation audits at 3 levels: Organisational Location based Client files - including deceased

6 EDUCATION: for us Preparatory education - Both project staff completed courses : NSN822/NSN830 Palliation in Dementia Care from Queensland University of Technology (QUT) in collaboration with the Eastern Australia Dementia Training Study Centre (EADTSC) Respecting Patient Choices (RPC) (ACP programme) and Train-the-Trainer in RPC These courses set up our content for the delivery of workshops

7 EDUCATION: for our people A two-day workshop for Palliation in Dementia in 2 rounds (October-November, February) RN/EEN level but open to allied health and pastoral care also A one-day workshop in RPC with 6 hours online content prior in 2 rounds (November and March) For either self or manager identified staff with interest and ability to perform ACP conversations An 8-hour workshop in ACP in the Catholic Health Model for Caritas Care staff (April) A 4-hour workshop for PC/AIN s (May June)

8 EDUCATION: Attendance 2 day workshops: 209 RPC workshops: 55 ACP workshops: 8 4 hour workshops: 45 and still counting! 72% partnership attendees 96% female 37% born overseas, with 10% with English as Second language Over 70% part time Around 80% over 2 years in aged care 70% had heard the term Advance Care Planning

9 What we found in Pre chart audits Diagnoses - 81 % with a diagnosis but 16% were seen as having dementia by staff but not diagnosed as such (even in secure units!). 55 different descriptors of types of dementia and 15 descriptors of stages. EPOA s 80% id d there was one but only 19% in files AHD s 5½% had them most of which were in files EoL conversations or ACP processes under 1% EoL conversations with Doctors recorded Any form of EoL wishes 13% Palliative Care plans - 32% of deceased persons

10 What do we measure to evaluate? Comparison of pre- intervention chart audits with post-intervention chart audits Diagnoses, practices, records, processes Workshop evaluations 3 levels for types Includes prior knowledge and confidence questions for PC/AIN s Comparison of pre- education surveys with post-education surveys Who, knowledge, confidence, practices reported now Pre and post ACP interviews with clients /residents carers thematic analysis How do you feel before ACP, after. What value do you perceive.

11 How do we evaluate so far? Evaluation of interventions are still under way Positive workshop evaluations led to additional workshops Anecdotal increase in awareness and discussion Introduction of processes for improved ACP capture (folders, stickers, forms) Changed practices of GP rep. Early positive results from carer interviews (5)

12 Small goals, big hopes - Key outcomes so far CURRENT CLIENTS- post intervention: 78 audited from 8 sites About one quarter of original cohort audited so far Changes generally : Still only 41% re specific diagnoses eg AD, VasD, Kors etc as opposed to 47% pre 28 % hospitalisations were at a similar level Statements about wishes regarding hospitalisation slightly up from 5% to 8% AHD s 11% and 6% filed an increase of about 5% EPOA s fewer by 7% but increase from those in files from 19% to 39%

13 Re-audited charts 24 charts (33%) were the same charts as audited in the pre-education round Commonalities Increased specificity of diagnoses, added EPOA forms, added clarity re decision maker, EoL conversations notations

14 Small goals, big hopes - Key outcomes so far Increase in End Of Life Palliative care stage Doctors notations re End Presence of a palliative Any forms of notation Any form of reference to conversations recorded at 16% - previously 7%. of life conversations - up from 3% to 14% regarding an ACP process noted - slightly up from 13% to 17% referenced only minor change, was 6% now 8% care plan only slightly increased from 5% to 8% wishes at End Of life - up from 17% to 30%

15 Small goals, big hopes - Key outcomes so far From DECEASED files : Numbers : 9 audited, 3 same as pre-intervention audit Changes in pre and post audited files Clear decision maker added (QCAT), Palliative Care Plan added, Reference to palliative care stage added Pastoral carer involvement added x2 Added End of life discussion with Dr Added cultural references

16 Small goals, big hopes what we hope continues ACP discussions will start or continue to be on offer for any client who wishes to participate in all sites Identification of references to ACP and palliation will continue to increase in files. All staff will recognise what the concepts mean and they will be able to recognise when clients want to make their wishes known That pain relief will be improved for people with dementia That a suite of policies, procedures, care manuals, and learning materials will be available and actively used in all services.

17 Facilitators or Barriers? FACILITATORS External marketing e.g. CPCRE calendar. Managers and individuals with drive and passion for programme. Committee : Consumer representative, Meaningful and constructive discussion in Committee- collaboration Flexibility in allowing more than only partner organisations staff to attend.

18 Facilitators or Barriers? BARRIERS Aged Care Industry Issues: staffing levels, not released for training, busyness, RN s time to conduct ACP, entrenched practice and work structures. Lack of management support in some sites. Unanticipated Doctrine issues in CHA (creatively overcome). GP knowledge in Palliative care. Regional to metropolitan variations in access to specialist care.

19 Questions?