‘Integrated Hospice’ - Challenging myths & creating opportunities

1. ‘Integrated Hospice’ • - Challenging myths & creating opportunities • Dr Juliet Spiller • Consultant in Palliative Medicine • Marie Curie Hospice Edinburgh • Juliet.spiller@mariecurie.org.uk • @JASpiller

2. Overview Hospice care and Holistic Care – definitions and myths Aligning hospice with National Strategy Specialist focus with generalist role Fit for future purpose – opportunities for evolving to address unmet need

3. Definition

4. HOSPICE MYTHS ‘Hospice is where people (with cancer) go to die’ A Hospice is the best place to die A Hospice is only for a select few – most folk aren’t eligible for that Hospice Myths evolve from a focus on the building or the organisation rather than focusing on Hospice as a philosophy of care

5. Philosophy of Hospice care = attention to the physical, psychological, social and spiritual aspects of a person Philosophy of Holistic care = attention to the physical, psychological, social and spiritual aspects of a person Hospice care = Holistic care = Person-Centred care

6. Philosophy of Hospice care = attention to the physical, psychological, social and spiritual aspects of a person

7. Aligning hospice with National Strategy Strategic Framework for Action on Palliative and End of Life Care - ‘By 2021 everyone in Scotland who needs palliative care will have access to it’ • What is the need? • Increasing older population • Increasing chronic disease burden • minimum 75% of all deaths have palliative care need • Hospice UK suggest 25% unmet need at present • Marie Curie research confirms 25% of Scots did not get the care that was needed at end of life for a loved one

8. Aligning hospice with National Strategy Strategic Framework for Action on Palliative and End of Life Care - ‘By 2021 everyone in Scotland who needs palliative care will have access to it’ Person Centred Care – focus on ‘What matters to you’ Living Well in Communities – Anticipatory Care Planning, Frailty indicators, Identification Realistic medicine – personalized care, shared decision-making, values-based care

9. Realistic Medicine– ethos of person-centred clinical care with patient values as the focus. • “This is what we all must do to provide good care” • Values,shared decisions, person-centred, individualised approach, focus on what matters to you, benefit/burden balance Realistic Medicine is not just about Palliative Care but Palliative Care is, and always has been, about Realistic Medicine. Hospice teams have this at the core of all they do.

10. Create opportunities for person-centred conversation Engage with the importance of being able to talk about what matters Help patients express the outcomes they would value and those they fear Offer and explain treatments in that context

11. Specialist focus with generalist role • UK Hospices provide direct care for >200,000 people per year • 83% of direct hospice care is provided in community settings – (home care, hospice at home, outpatient, day therapies) • Holistic / person-centred care surely goes with the territory?

13. Initial focus on staff and culture • Transformed staff induction • Schwartz rounds • Staff engagement ‘exercise’ – getting to know eachother • Transforming our approach to change management • Identifying and valuing hobbies, skills, expertise • Specialist focus on person-centredness • Resulting in • Creative approaches to fundraising • Engagement with adapting care ‘systems’ • Creative approaches to adapting care environment • ‘Getting to know me first’ document developed and used by staff

15. Creative collaborative approach to improving equity of access – for example…… • Specialist focus on person-centredness • Collaboration with Psychological Medicine Dept on transferrable values based psychological approaches (Acceptance and Commitment Therapy-ACT) • Work with Access GP practice for Homeless patients • Work with Scottish Prisons • Focus group for LGBTQ palliative care access

16. Specialist focus with generalist role • UK Hospices provide direct care for >200,000 people per year • 83% of direct hospice care is provided in community settings – (home care, hospice at home, outpatient, day therapies) Increasing future need for holistic EoLC in the face of current unmet need (1 in 4 in Scotland) How are we widening access? How do we open up hospice care?

17. UK Hospices fundraise £2 million per day • Resource reality check • 38% average core funding for Scottish Hospices from Government/Health Board – the rest comes from local communities • 62% of independent hospices are drawing on reserves to cover costs • 44% of independent hospices are delaying or cancelling plans to introduce new services or expand existing service

18. Focus expertise and finite resource on the most complex need? • Focus expertise and finite resource on early intervention and preventing complexity • Specialist focus vs generalist role?

19. Fit for future purpose – opportunities for evolution to address the unmet need Creative collaboration and shared-learning for example….. • Project ECHO • Building on the Best • Collaborative Cares Homes initiatives • Anticipatory Care Planning • - culture, process, documentation & making it work • National Digital Platform • Public Health Promoting Palliative Care • Good Life Good Death Good Grief • Schools education projects • Death Cafes, ‘To Absent Friends’ etc • Wills / PoA services

20. Fit for future purpose – opportunities for evolution to address the unmet need Creative collaboration and shared-learning for example….. • Project ECHO • Building on the Best • Collaborative Cares Homes initiatives • Anticipatory Care Planning • - culture, process, documentation & making it work • National Digital Platform • Public Health Promoting Palliative Care • Good Life Good Death Good Grief • Schools education projects • Death Cafes, ‘To Absent Friends’ etc • Wills / PoA services

21. Project ECHO • Fit for future purpose – opportunities for evolution

22. Project ECHO • Fit for future purpose – opportunities for evolution

23. Project ECHO Palliative CarePerth and Kinross • Project ECHO is a validated global approach. • Uses video technology to create networks of learners and communities of practice. • Shares best practice through case based learning using a hub and spoke approach. • For more information about the roll out in Perth and Kinross contact: • tay-uhb.echopalliativecare@nhs.net

24. The National Digital Platform • Catalyst for Hospice IT integration with NHS IT systems • ‘Single source of truth’ for health and social care information across Scotland • Read and write access (only GPs can update KIS) • Single log-in from within hospice electronic patient record • Uses open Electronic Health Record so no lock-in to costly software vendors • Fit for future purpose – opportunities for evolution

25. https://scottishdigitalhealthblog.nes.digital/nds/ “What would it be like if every interaction you had with NHS Scotland technology made you felt cared for? ” • Fit for future purpose – opportunities for evolution

26. “My first take is that kind technology… • Works; • does what you need it to do; • is simple and clear to use; • respects your time, your attention, and your emotional state; • recognises diverse users and usage and; • listens to and responds to your feedback” • Fit for future purpose – opportunities for evolution

27. Can Hospice care use ‘kind technology’ to better support holistic care? • Fit for future purpose – opportunities for evolution My ReSPECT MyNDP? My ACP

28. www.respectprocess.org.uk A UK-wide project to enable realistic, person-centred emergency care (not just End of Life Care) for anyone, of any age. A process which prompts and facilitates realistic conversations between a patient, family and their health professional A widely recognizable way of documenting realistic person-centred recommendations for emergency care & treatment A nationally supported digital platform to ensure this information can be accessed when it matters NHS Forth Valley –ReSPECT process experience https://www.youtube.com/watch?v=7tThnoOd_Ms&t=24s

29. ‘A conversation is a process. Any professional at any time in the patient’s healthcare journey, regardless of whether they are in the community, primary, secondary or tertiary care, should engage with a willing patient. It is not a one-off, tick-box event.’

30. Holistic End of Life Care requires a culture shift by the public and by professionals in every health and social care setting There is always more to do!

31. Holistic care is person-centred, values-based & personalised Modern hospice reflects desire to improve access to truly person-centred palliative care for everyone in every care setting Challenges to effective integration include workforce issues, state funding, lack of IT integration, and ongoing ‘hospice myth’ • Summary Creative collaboration is a strong hospice skill Opportunities for more effective integration include Realistic Medicine, the National Digital Platform, Project ECHO, Schwartz Rounds, Building on the Best, GLGDGG etc

32. juliet.spiller@mariecurie.org.uk