1. GP ST 1&2 PALLIATIVE CARE & ETHICS Niall Cameron Rosalie Dunn Carolyn Mackay Euan Paterson

2. Palliative Care and Ethics 09:00 Palliative care – Planning in an uncertain world 11:30Coffee / Tea 12:00Symptom Relief in Palliative Care 12:45 Dining with death! 13:30 End of Life Ethics 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. Who are we talking about? What cohort of patients do YOU think we are talking about?

5. Who is WHO talking about? ‘Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ World Health Organisation

6. Who is Chuck talking about? ’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

7. Who are we talking about? Probability / possibility Uncertainty What about… -Renal failure / dialysis -Advanced lung cancer -COPD -93 year old / multi-morbidity / dementia

8. Who are we talking about? Probability / possibility Uncertainty What about… -Renal failure / dialysis / decision taken to stop dialysis -Advanced lung cancer / semi-conscious / no fluids -COPD / chest infection -93 year old / multi-morbidity / dementia / UTI

9. How do we decide? Consider ‘dying’ as a possibility! What primary disease do they suffer from?

10. 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

11. Diagnosing dying Personal trajectory – How are they at this moment? – How were they? – How rapidly are they changing? Would you be surprised…?

12. Who are we talking about? Patients with supportive / palliative care needs Whoever YOU feel should be included! And consider: – Palliative care register – GSF register – SPICT / GSFS prognostication guidance? – Chronic disease registers? – Care Home patients?? – Housebound patients???

14. The 9 Cs C 1 Consider dying as a possibility C 2 Competence C 3 Compassion C 4 Capacity C 5Communication C 6Care planning C 7Ceilings C 8Current needs C 9Care in the last stages of life

15. C 1 – Consider dying as a possibility The last dozen slides…

16. C 2 – Competence Your own! Do you have enough knowledge & skills? -Diagnostic accuracy -Knowledge of condition, natural history, interventions -Communication skills Do you have enough experience? Do you need help? Who can you get help from?

17. C 3 – Compassion Show that you care! -Be polite and courteous -Make it personal -Show interest -Add ‘little touches’ / Unbidden Acts of Human Kindness(!) -Give your time (even when you have very little!) -Empathy & Compassion

18. C 4 – Capacity Does the patient have capacity? If not do they have a legally appointed representative e.g. PoA or Guardian? Other medico-legal aspects -Consent (KIS / ePCS) -Advance decision to refuse treatment

19. C 5 – Communication Who needs to know? What do they need to know? How?

20. C 5 – Communication Who needs to know? -Patient / family / loved ones -Colleagues e.g. Partners, Nurses, OOH, SAS, Acute, Specialists What do they need to know? -Possibility / probability of death -Prognostic uncertainty -What the plans are -That you care! How? -In person, telephone, KIS

21. C 6 – (Anticipatory) Care Planning Plan A -Active treatment aimed at recovery Plan B -Active treatment aimed at a good and dignified death

22. C 7 – Ceilings of treatment / intervention What are the ceilings? E.g. -Transplant -Admission / transfer -Dialysis / ventilation / cardiac devices(!) -CPR -Surgery / drug therapy -Antibiotics (and route) -Nutritional support -Hydration (including S/C fluids)

23. C 8 – Current needs Physical -Symptom relief -Bowel / bladder care -Oral care Psychological Personal -Social -Spiritual (the inner self)

24. C 6 – (Anticipatory) Care Planning Plan B -Probable / Possible -Prescribing Rationalise medications -What is essential -What is not needed -What to do with those in between Just in Case -What might be needed / Route of administration -Processes DN VoED DNACPR End of Life Care Plan

25. DNACPR

26. 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 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

27. 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

28. 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

29. Introducing the subject of DNACPR Communication Breaking bad news – Narrowing the information / knowledge gap – We know something we think they need to know! E.g. CPR futile or CPR not futile and do they want it – 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

30. Discussing DNACPR Know the patient and their context Be clear about benefit/burden balance of CPR (Rx) Consider benefit/burden balance of discussion Consider who should discuss Consider when to discuss Discussion on CPR should be part of wider discussion Often less difficult earlier in disease Small chunks and check… (BBN) Aim is to Allow a Natural Death Compassion!

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

32. Getting CPR raised By us (in the course of a discussion) – 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…

33. 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

34. 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

35. 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

36. 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

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

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

39. C 9 – Care in the Last Stages of Life Care checklist -Review ceilings of treatment / intervention -Review medication -Review hydration -Review current needs -Plan for death Communication -Does everyone know that now just Plan B? Compassion (yet again!)

40. Legal Personal Medical Potential Problems DN Verification of Expected Death KIS / ePCS Welfare Power of Attorney Advance StatementThinking ahead & making plans Anticipatory Care Planning Just in Case DNA CPR SPAR End of Life Care Plan (LCP) 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 C 6 – (Anticipatory) Care Planning SPAR Lanarkshire Home Care Pack

41. 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

42. 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

43. 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

44. ACP Process When should this be done? Who should do it? How should it be done? How can it be shared?

45. 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? – KIS / (ePCS) – Other communication

46. Which patients is KIS for? Not just palliative care! 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???

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

48. What does KIS contain? 0 : Consent 1 : Demographics 2 : Current situation 3 : Care & Support 4 : Resuscitation & Preferred Place of Care ePCS

49. What does KIS contain? 0 : Consent KIS Upload decision Patient consented? These two are essential for data upload Apply Special Note KIS Review date

50. What does KIS contain? 1 : Demographics Patient Details Practice Details Usual GP Patients Emergency Contact Number Carers Next of Kin Access Information Agency Contacts

51. What does KIS contain? 2 : Current Situation Medical History Self Management Plan Anticipatory Care Plan Single Shared Assessment Oxygen Additional Drugs Available at Home Catheter and Continence Equipment at Home

52. What does KIS contain? 3 : Care & Support Moving and Handling Equipment at Home Adults with incapacity Form Guardianship with Welfare Decision Making Powers Power of Attorney

53. What does KIS contain? 4 : Resuscitation & Preferred Place of Care Preferred Place of Care DNACPR Form in place

54. What does KIS contain? ePCS Consent for Electronic Transfer to ePCS Services Care at Home (basically presence of syringe pump) OOH arrangements GP OOH Contact Number(s) Patient’s Understanding

55. 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 (KIS/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…

56. Knowledge K

57. Skills K S

58. Attitudes K S A