Presented by the Exeter Hospiscare Community Palliative Care Team on the 2 March 2011, in Exeter, Devon. More infor at www.hospiscare.co.uk

1. Advanced Care Planning Exeter Hospiscare Community Palliative Care Team 2 March 2011

2. Who’s who? Exeter Community Palliative Care Team: Jane Oliver Beth Daw Rebecca Meyrick Freddy James – GSF in Nursing Homes Kerry Macnish – Education Manager Tim Harlow

3. Background to Advanced Care Planning Jane Oliver Clinical Nurse Specialist Hospiscare

4. Why Advanced Care Planning?(ACP) Around half a million people die each year. 2/3rds are over 75yrs & die from chronic illnesses such as heart disease, cancer, CVA, COPD, neurological disease & dementia. 58% of deaths occur in Hospital, 18% at home, 17% in Care homes, 4% Hospices, 3% elsewhere. (DH, 2008)

6. Public surveys demonstrate most people wish to die at home (DOH, 2000).

7. Many receive good care & their preferences & wishes at EoL are met.

9. Equity of Care Every individual approaching EoL irrespective of diagnosis, age, gender, ethnicity, religious belief, socioeconomic background, disability, sexual orientation should receive high quality EoL care. (DOH, 2008). Whatever the care setting, whether home, hospital, care home, hospice or elsewhere.

11. Initiates discussions about preferences & wishes .

12. Agrees a plan of care.

14. ADVANCED CARE PLANNING Beth Daw COMMUNITY CLINICAL NURSE SPECIALIST Palliative care

15. Advance Care Planning “ Caring for people at the end of their lives is an important role for many health and social care professionals. One of the key aspects of this role is to discuss with individuals their preferences regarding the type of care they receive and where they wish to be cared for” (Mike Richards 2007)

16. What is Advance Care Planning? ACP is a process of discussion between an individual and their care providers irrespective of discipline The difference between ACP and general care planning is ACP usually takes place in the context of an anticipated deterioration in the individual’s condition in the future Preferred Priorities of care (PPC) is the documentation used to record an advance care plan

18. Who completes it?

19. What does it provide?

20. Is it legally binding?

21. How does it help?

22. Does it need to be signed and witnessed?

24. Hope and ACP Information leads to less fear and more control Helps maintain relationships, preserve normality, reduce feelings of being a burden. Encourages a sense of being in control, empowered and enabled. ACP can enhance HOPE not diminish it

25. Strategies in Instigating an ACP Jane Oliver Clinical Nurse Specialist Hospiscare

26. Focus Identify the timing to instigate ACP Presenting Opportunities/triggers. Basic Communication skills/strategies in conversations.

27. Indentification of EoL Many with chronic illness(s) reach a point where it is evident they are going to die from their condition. Other conditions it can be difficult to accurately predict. Gold Standards Framework Prognostic indicators (GSF, 2008) provides guidance.

28. Cancer High Function GP’s Workload Ave 20 Deaths per GP per year Low Time Organ Failure High Function Low Time Fraility/Dementia High Function Low Time Taken from GSF Prognostic Indicator guide 2008

29. The ‘triggers’ The surprise question: would you be surprised if this individual were to die within 6 – 12months? - ‘gut instinct’ Clinical Indicators of Advancing Disease , i.e. Reduced physical performance, frequent admissions to hospital/out of hours services. An individual opts for comfort measures /opts out of curative treatment .

30. triggers to consider Referral to Specialist Palliative Care team. Following diagnosis of a life limiting condition ie. MND, advanced cancer, dementia. At instigation of DS1500. At an assessment of an individuals needs, complex care package, carer distress, respite care. Admission to a care home.

32. Non-verbal Communication, eye contact, attentive listening.

33. An open style of dialogue..

34. How do you feel things are with you?

35. How do you see things going from here?

36. Have you thoughts/feelings about becoming less well ?

39. Take the lead from the individual but may need to initiate; listen for the cues.

40. Has to be a voluntary process.

41. Check your understanding; Reflect back.

43. Thank you for listening

44. Advanced Decision to Refuse Treatment Rebecca Meyrick Community Cluster Team Leader Exeter Hospiscare

45. Mental Capacity Act – Implications for ADRT Empowerment for adults who lack capacity Protection for adults who lack capacity and those who care for them Choice - by allowing people to appoint those they trust to make decisions for them

47. People with fluctuating consciousness or capacity

48. People who are under the influence of drugs or alcohol

49. People who are imminently dying and who no longer have full mental capacity

51. Must be written, signed and witnessed if it includes a refusal of life sustaining treatment

52. Will come into effect only when the individual has lost capacity to give or refuse consent

53. Must be valid and applicable

54. “Even if my life is at risk”

56. Assessing capacity Does the person have an impairment of, or a disturbance of, their mind or brain? Does the impairment or disturbance mean that the person is unable to make a specific decision when they need to?

57. Four tests Can they understand the information? Can they retain the information? (only needs to be for long enough to allow them to use and weigh up the information) Can they use and weigh up the information? (ie. Can they consider benefits and burdens?) Can they communicate their decision?

59. If binding, the person has taken responsibility for the decision

61. Court appointed Deputies

63. Hope helps determine future goals and provide insight

64. Information leads to less fear and more control

65. Helps maintain relationships, preserve normality, reduce feeling of being a burden, encouraging sense of being in control,

66. Empowering and enablingDavison Simpson BMJ

67. So what does this mean for you? Where are you with GSF? What are the current barriers and challenges for you? Suggestions for improvement of ACP in Primary Care?

68. Current Problems with ACP and CPR Both professionals and the public understanding of CPR and its success rate remains misunderstood Some patients are having CPR attempted inappropriately and as a result death can be undignified and traumatic Dying patients are being transferred back to hospital when their preferred place of death is home Patients wishes and preferences are not always clarified and respected (advance decisions to refuse treatment) Good communication and consistent documentation is variable All care settings including ambulance service have their own documentation to record DNAR

70. Clarify the differences between PPC and ADRT

71. Clarify that patients and relevant others will not be asked to decide about CPR when clinicians are as sure as they can be that CPR would not be successful and therefore is not a treatment option

72. Ensure a DNAR and all documents are communicated