Co-authoring the last chapters of our lives

1. Co-authoring the last chapters of our lives a consistent approach to supporting individuals as the end of life draws near Deans Buchanan

2. What does living and dying realistically mean to you?

3. Andrew Howie was asked to compose this song for the launch event of the Tayside Palliative and End of Life Care Network December 2017. His song “Echoes” was inspired from the quotes provided for this event, stories related to end of life care and a poem written by Professor Kathleen Jamie of Stirling University who penned the phrase “We are mere transients, who sing.” The verses are sung first from the perspective of someone facing end of life, then from a relative’s perspective and then from a carer’s perspective. The chorus seeks to be something we might all think, feel, say or recognise.

4. Andrew Howie was asked to compose this song for the launch event of the Tayside Palliative and End of Life Care Network December 2017. His song “Echoes” was inspired from the quotes provided for this event, stories related to end of life care and a poem written by Professor Kathleen Jamie of Stirling University who penned the phrase “We are mere transients, who sing.” The verses are sung first from the perspective of someone facing end of life, then from a relative’s perspective and then from a carer’s perspective. The chorus seeks to be something we might all think, feel, say or recognise.

5. You caught me off guard with that look in your eyes

7. Can you still hear the oceanin this shell?

8. I'm staring into the middle distancetrying to gauge the gap between

10. Are we transients who sing then slowly fade?

11. I'm here but I'm helplessAn impotent bystanderAnd it's too late to death defy

13. And if there's a skill to letting gothen it's one I need to know

14. I'm staring into the middle distancetrying to gauge the gap between

16. Are we transients who sing then slowly fade?

17. Are we echoes of a soundyet to be made?

19. You caught me off guard with thatlook in your eyes

21. But there's no getting used to that flickering light

23. I'm staring into the middle distancetrying to gauge the gap between

25. Are we transients who sing then slowly fade?

26. Are we echoes of a sound yet to be made?

27. In the end are we the sum of what we gave?

28. “Palliative care starts from a place of shared mortality and the recognition common humanity” * * * * * If there are any parts of this song or from the rest of this session that raise issues or questions you wish to talk about then please speak to leader or facilitators of this session afterwards

29. Co-authoring the last chapters of our lives a consistent approach to supporting individuals as the end of life draws near

30. This session aims to consider and discuss: • Sharing realistic approaches when your reality is challenged • Sharing decisions, sharing power, sharing humanity • Consider some end of life data and ask what matters to us? • Personalising consistency • Promoting warranted variation • Reducing unnecessary variation

31. Mortality in Scotland • 100% of the Scottish population are mortal • An approach to care that recognises this fact can still centre around vitality, personhood and fulfilment • “Our mission is to help people complete lives, not die deaths; we prolong where feasible and desirable; we relieve where possible and we never say there is nothing more that can be done.” Prof. Rob George • Around 56,736 people die (from ill-health) each year • On a given day in Scottish hospitals: • 10, 743 people were in-patients in the acute setting • 28.8% (3,093) of those admitted/were in-patients died within the next year • 9.3% (1,027) died during that admission Clark et al, Pal Med 2014 • On average those who are in the 6 months life in Scotland spend 22 days in hospital • Some of these days relate to diagnosis • Some of these days relate to treatments and discharge home • Some of these days are the last days of life ISD, Scotland 2018

32. What does the phrase “a good death” mean to you?

33. ‘My story is broken, can you help me fix it?’

34. Shared decision making = Co-authorship? • “Allow a rich and meaningful dialogue built on partnership and placed at the heart of every interaction between those giving and those receiving care” WojcikG. Good practice in shared decision-making and consent. The Scottish Government, 2018. • Citizens Jury: • A programme to inform and educate patients of their right to ask questions of health professionals and which questions are useful • Training for all health and social care professionals on SDM • The opportunity for an independent person to join conversationScottish Health Council. Our Voice Citizens’ Jury on Shared Decision-making, 2019.

35. SMD and PEOLC • Little evidence and literature specific to PEOLC • Evidence around: • Majority of people wish to participate in decision-making • Most do not achieve level of involvement they would wish as decisions delayed and/or alternatives not discussed • Discussions grounded between “hope and acceptance” • Cognitive capacity is a issue in palliative care • 31% of patient in a Palliative Care Unit did not have capacity • Comparable to general medical ward levels 30-40% • PEOLC decision-making has three main modes: • Continuous care, real time with capacity/reality to allow SDM • Emergency events with minimum time/capacity/consciousness for discussion to inform reactive care • “What does the future hold?” and ACP discussions Belanger et al SDM in Palliative Care, Palliative Medicine (2010)

36. Co-authorship as the end of life draws near? • What matters to you? • What do I need to know about you as a person to give you the best care possible?

37. Shared decision making: co-authorship • Who’s is sharing with who? • What is the context for the decision? • Relationship • Shared humanity and common mortality • Knowledge of who and knowledge of what • Reality-perception-reality • What is the story, how is it broken and how will it proceed?

38. Letters to about you, to you? Personalising Realistic Medicine, CMO Report 2017-2018

39. What do you think? • Working between hope and acceptance? • Sustenance-substance • The limits of “illness control” treatments being reached • Personal goals • Others of significance to you • Time left • What the future holds • Pace • Honesty • Personhood

40. ‘Variability is the law of life, and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease.’ William Osler (1849-1919)

41. Personalising Consistency: Co-design?

48. What one thing could you do to aid the Scottish population to live and die realistically?

49. Sign up to: Tayside Palliative and End of Life Care Network Email: palliativenetwork.tayside@nhs.net Twitter: @tayPEOLC Web: www.ahspartnership.org.uk/ahsp/taypeolc “By 2021, everyone in Scotland who needs palliative care will have access to it”