1. End of Life Care Some Practical Tips and Case Studies Dr Luke Feathers Consultant in Palliative Medicine

2. What will we cover? Identifying patients at the end of life - and what do to next Advance Care Planning DNACPR forms Challenging cases

3. Identifying Patients at EOL What are your challenges?

5. Identifying patients at EOL Proactive vs reactive What’s the prize? Prognostic paralysis

8. What’s the prize? Symptom control Communication Planning for the future “I am sorry. I forgive you. Thank you. I love you”

9. Barriers to ACP

10. Hope and fear Death as Taboo Professional inexperience Reductionist thinking - tick box culture?

12. ACP Planning ahead Safer and more effective care Continuity Reduce misunderstandings/conflict Values – beliefs - feelings Interventions eg CPR PPC – acknowledging impact on treatments Religious, spiritual and personal needs Includes family views GMC End of Life Care Guidance

13. ACP - ethical issues Is it autonomy or paternalism? So?

14. Advance decisions to refuse treatment (ADRT) What you don’t want to happen Legally binding MCA 2005 Specific circumstances, wording needed for refusing life sustaining treatments MND, dementia

15. Advance Statements What you would like Not legally binding Aim to guide future treatment – values etc Preferred place of death (PCT measure?), treatment escalation plan EMAS EOL decisions form GSF Care Home ACP tool Preferred Priorities of Care

17. Challenges Foreseeing what will happen Response shift Differing views Impact of BBN “I want to live for the moment” Controlling death – The false promise of ACP

18. ACP cartoon

19. Triggers?

20. Triggers New diagnosis Death of a family member Patient request Prognostic indicators Multiple admissions Going to a care home

21. Do patients want to know? 73% of patients would like to discuss prognosis 8% of people with COPD had been informed they were going to die from the COPD 64% of clinicians felt it was difficult to start a discussion In severe COPD, when offered an appointment with a palliative care specialist to discuss prognosis / end of life care issues (on top of usual care) 29% took up the offer 2 Elkington et al, 2001 Matthews et al, 2007

22. Why ACP? Can instil hope Empowerment Helps relationships – less feeling of burden A future consistent with their values But…left to HCPs to initiate…not a focus within current clinical care BMJ 2006:333;886 Davison and Simpson

23. Other challenges Patient expectation –COPD - BMJ 2011:2011;342;142 Chaos narrative “People like Mr X who doesn’t really bother us that much, we really only see him when he’s not well.” Hospital Dr “At least if they are on the register, someone in the practice is talking to them, whereas they are forgotten otherwise.” GP

24. Useful phrases?

25. Phrases “You’ve been quite poorly recently – what are your thoughts about all of this?” “This is the third time you’ve been in hospital this year, it seems to be getting more frequent – what are your thoughts (feelings) about this?” ‘Would you find it helpful to talk about the future? How would you want to be cared for?”

26. “Let’s hope for the best and plan for the worst”

27. DNACPR July 2010 New form Crosses care boundaries Explicitly about CPR and not other Rx Includes suitably trained/experienced nurses Patient keeps original

30. Decision making Where if might be useful, discuss option What about when patients insist when we know it won’t work?

31. DNACPR discussions – when futile “Do you want to be resuscitated?” = proxy question….”Do you want to live?” = for families “Do you love them?”

32. Linguistics affects resistance Recommendations for particular treatment (e.g. ‘‘I’m gonna give her some cough medicine.’’) Recommendations against particular treatment (e.g. ‘‘She doesn’t need any antibiotics.’’). Social Science & Medicine 60 (2005) 949–964 Stivers

33. EOL parallels “Resuscitation won’t work so I need to fill in a do not resuscitate form” vs “We’ve discussed that you’d like a dignified and peaceful end and so….I’m going to let the ambulance service know…to support you and your family…rather than to try to restart your heart...as it wouldn’t work …” “Allow a natural death….”

34. ACP recommendations Keep it simple EMAS EOL form, special notes, GSF list Consider identifying patients “at risk” Quality and productivity benefits…. Useful phrases 16 th June am, 17 th Nov pm Loros Training

35. Challenging cases

36. Case Study 65 year old lady Advanced breast cancer Base of skull, skin, lung mets Recurrent hypercalcaemia – Rx 3 times Sent home to die (PPD) Family ask for feeding Subcut fluids from DN team What would you do?

37. More information Muslim – only Allah can decide on timing “We accept she is dying but it should not be from starvation” Significant distress Family and professionals Mention of negligence Concern about bereavement

38. Principles Offer treatments of “overall benefit” Patient wishes (assess capacity) Family No obligation to offer a treatment you do not consider will be of overall benefit but… 2 nd opinion If uncertainty then go with patient wishes

39. Outcome Offer s/c dextrose Decline to offer feeding/admission Why didn’t I do more? Unexpected outcome Died at home – opportunity to help

40. Case study 65 year old lady Recurrent gastric cancer Bowel obstruction and vomiting Sent home to die Request for TPN – “She is hungry” On s/c fluids What would you do?

41. More information Hindu family Respectful but persistent Hospital MDT had made their decision Involved nutrition lead 5% dextrose - ?helps later negotiation Admission to hospice – useful Home then readmitted and died

42. What did I learn? Need to understand their perspective That I may not be able to satisfy their request How I negotiate now matters for later If I am clear on the lack of “overall benefit”, to be clear in communicating that Including other “experts” means they are in the loop

43. Ethical Issues GMC EOLC Guidance is fairly practical Involve an MDT/ 2 nd opinion in difficult cases It is challenging at times Your decision making and documentation may be scrutinised…..

44. What have we covered? Identifying patients at the end of life Advance Care Planning - further training and local group? DNACPR forms - further training useful? Some challenging cases