1. ST 2 PALLIATIVE CARE & ETHICS www.palliativecareggc.org.uk www.nhslanarkshire.org.uk/services/palliativecare/ www.palliativecareggc.org.uk www.nhslanarkshire.org.uk/services/palliativecare/ Niall Cameron Rosalie Dunn Elayne Harris Euan Paterson

2. Palliative Care and Ethics 09:00 Diagnosing dying / Anticipatory Care Planning 10:15Do Not Attempt Cardio-Pulmonary Resuscitation – key issues & approach 11:00Coffee / Tea 11:15End of Life Ethics 12:30 Dining with death! 13:30 Symptom Relief in Palliative Care 14:45Coffee / Tea 15:00The ‘Good Death’ 16:30Feedback / Close

3. Some all too common problems… The ‘sudden’ deterioration What does the patient know / think / want? What do the family know / think / want? Lack of medication Blue light ‘999’ at end of life Who knows what? The weekend catastrophe The ‘bad’ death… …and then 4 hours to confirm it happened!

4. Anticipatory Care Planning (ACP) What is it? Why is it (possibly) more important in palliative care? Which patients is it for?

5. ’Marla doesn’t have testicular cancer. Marla doesn’t have Tb. She isn’t dying. Okay in that brainy brain-food philosophy way, we’re all dying, but Marla isn’t dying the way Chloe is dying’ Chuck Palahniuk - Fight Club

6. Death High Low Many years Function Death High Low Months or years Function Organ failure 6 Acute 2 Dementia, frailty and decline 7 Death High Low Weeks to years Function 5 Cancer GP has 20 deaths per list of 2000 patients per year Numbers and Trajectories

7. Diagnosing dying What primary disease do they suffer from? How are they at this moment? How rapidly are they changing? Would you be surprised…?

8. Which patients is it for? Patients with supportive / palliative care needs – Whoever YOU feel should be included! – Palliative care register – GSF register – SPICT / GSFS prognostication guidance? – Chronic disease registers? – Care Home patients?? – Housebound patients???

10. Anticipatory Care Planning (ACP) What is it? Why is it (possibly) more important in palliative care? Which patients is it for? What does it entail?

11. Legal Personal Medical Potential Problems Liverpool Care Pathway ePCS Welfare Power of Attorney Advance StatementThinking ahead & making plans Anticipatory Care Planning Just in Case DNA CPR SPAR DN Verification of Death GSFS Advance Care Planning Continuing Power of Attorney 1 Statement of values 2 Preferences & priorities 3 Advance decision to refuse treatment 4 Who else to consult Guardianship Anticipatory Care Planning SPAR Lanarkshire Home Care Pack

12. Legal Capacity – Welfare Power of Attorney – Continuing Power of Attorney – Guardianship Consent – To record – To transfer Advance decision to refuse treatment

13. Clinical Consideration of potential problems -What is likely to happen to THIS patient -What might happen to THIS patient DNACPR Just in Case -Proactive prescribing DN Verification of Expected Death Liverpool Care Pathway for the Dying Bereavement

14. Patient / Personal Preferred priorities of care – Place of care – Place of death – Admission? – Aggressiveness of treatment What is wanted What is not wanted – Who is to be involved

15. The views and wishes of patient / carer ‘My thinking ahead and making plans’ -What’s important to me just now -Planning ahead -Looking after me well -My concerns -Other important things -Things I want to know more about e.g. CPR -Keeping track Developed from work by Professor Scott Murray & Dr Kirsty Boyd, University of Edinburgh

16. Advance statement Statement of values -E.g. what makes life worth living What patient wishes -E.g. place of care, aggressiveness of treatment What patient does not want -E.g. PEG feeding, SC fluids, CPR Who they would wish consulted

17. Anticipatory Care Planning (ACP) What is it? Why is it (possibly) more important in palliative care? Which patients is it for? What does it entail? What is the process? – When should this be done? – Who should do it? – How should it be done? – How should it be shared?

18. ACP Process When should this be done? – At any time in life that seems appropriate – Continuously Who should do it? – By anyone with an appropriate relationship! How should it be done? – My Thinking Ahead & Making Plans – Carefully – Write it down How can it be shared? – ePCS – Other communication

19. What is ePCS for? Information transfer – ‘In Hours’ GP > OOH – Primary Care > A&E / Acute Receiving Units – Primary Care > Scottish Ambulance Service Prompts for proactive care Anticipatory Care Planning All data stored in one place Structure for lists / meetings / etc Palliative care DES

20. What does ePCS contain? Information upload – Palliative Care review date – Consent to share information Current situation – Diagnoses – Key personnel involved – Carer details – Current treatment Repeat Last 30 days Acute – Patient & carer understanding Diagnosis & Prognosis

21. What does ePCS contain? Future Care Plan – Patient wishes (VISION) – Preferred Place of Care – Resuscitation status – Additional drugs in house (Just in Case) – Advice for OOH GP e.g. Contact own GP OOH GP willingness to sign death certificate – Additional OOH information (KEY section) e.g. Patient wishes Starting Liverpool Care Pathway Etc…

22. The ACP Checklist Capacity – Power of Attorney / Possible future problems? Have we considered – What is likely & what might happen to this patient? – Where the patient would like to be cared for? – CPR / DNACPR? – OOH information transfer (ePCS) Have we considered the possible need for – Anticipatory prescribing (Just in Case) – RN Verification of Expected Death – The Liverpool Care Pathway for the Dying The patient / carer view – My Thinking Ahead & Making Plans…

23. DNACPR - Key Issues & Approach

24. DNACPR – Key Issues Consider -The fundamentals -The framework -The decision making process -The patient / family view -Legal aspects

25. DNACPR – Fundamentals The decision to offer CPR is a medical one Nothing to do with ‘quality of life’ If CPR is likely to be futile do not offer it

26. DNA CPR – Framework Is the patient at risk of a cardiopulmonary arrest? Decision making -CPR is unlikely to be successful due to: -The likely outcome of successful CPR would not be of overall benefit to the patient decided with patient decided with legally appointed......basis of overall benefit... – CPR is not in accord with a valid advance healthcare directive/decision (living will) which is applicable to the current circumstances

27. DNA CPR – Decision making Is CPR realistically likely to succeed? – What do we mean by ‘success’? – Population that we are considering – Facilities available – People available

28. CPR – Decision What you think / what patient wants – You think possible / patient doesn’t want CPR Simple – You think possible / patient wants CPR Complicated – You think futile / patient doesn’t want CPR Simple – You think futile / patient wants CPR Complex

29. DNACPR – patient / family / legal issues Patient / family view is only relevant if CPR is a treatment option If success anticipated – discussion needed If success not anticipated – inform patient Relatives should not be asked to ‘decide’ unless patient lacks capacity & legally empowered to do so Communicate sensitively!

30. DNACPR – Approach Consider – When you have done this What worked well? What didn’t?! – How to raise the subject – When to raise the subject – Practicalities

31. Introducing the subject of DNACPR Communication Breaking bad news – Narrowing the information / knowledge gap – We know something we think they need to know! – How much do they actually know? – How much more, if any, do they want to know – When do they want to know – Who do they want to tell them

32. The ‘bad’ news What we feel we need to cover – Whether CPR should be offered or not – If ‘futile’ patient / loved ones need to know this – If ‘not futile’ then we need to know what patient wants

33. Getting CPR raised By patient and carer – Spontaneously – Prompted Another professional e.g. the hospital said… ‘My Thinking Ahead & Making Plans’

34. Getting CPR raised By us (vague…) – How do you feel you are doing? – Where would you like to be cared for? – And if things got worse…? – How do you see the future? – Are there any things you’d like to avoid? – Etc etc etc…

35. Getting CPR raised By us (more pushy…) – If you’re really keen to be kept at home then What to do if there was a sudden change in your condition What to do if your heart was to stop

36. CPR – the subject matter General – What it means Allow a natural death – Likelihood of success – Whether ‘people’ would wish it Individual – In your case… ‘Fine line’ – Awareness raising, BUT – Clinical decision has already been made

37. What DNACPR is not about Anything other than CPR Any other treatments e.g. antibiotics Feeding Fluids Highlight everything else that we can still do

38. Patient centred supportive care What’s the most important thing in your life right now? What helps you keep going? How do you see the future? What is your greatest worry or concern? Are there ever times when you feel down? If things get worse, where would you like to be cared for? Professor Scott Murray, University of Edinburgh

39. DNA CPR – Practicalities Completing the DNACPR form Where should form be kept When to update form Patient transfer

40. DNA CPR – Practicalities Communication – Patients home Patient Family / loved ones OOH Services Scottish Ambulance Service Others?

41. Discussion