1. ‘Integrated Hospice’ - Challenging myths & creating opportunities
Dr Juliet Spiller
Consultant in Palliative Medicine
Marie Curie Hospice Edinburgh
@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 is where people (with cancer) go to die’
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. Specialist focus on person-centredness
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
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. Specialist focus on person-centredness
Creative collaborative approach to improving equity of access – for example……
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. How are we widening access? How do we open up hospice care?
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. Resource reality check
UK Hospices fundraise £2 million per day
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. Specialist focus vs generalist role?
Focus expertise and finite resource on the most complex need?
Focus expertise and finite resource on early intervention and preventing complexity

19. Creative collaboration and shared-learning for example…..
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. Creative collaboration and shared-learning for example…..
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. Fit for future purpose – opportunities for evolution
Project ECHO

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

23. Project ECHO Palliative Care Perth 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:

24. The National Digital Platform
Fit for future purpose – opportunities for evolution
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

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

26. Fit for future purpose – opportunities for evolution
“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”

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

28.
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

29. ‘A conversation is a process
‘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. There is always more to do!
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. Summary 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’
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