The document discusses advance care planning (ACP), which involves discussing future medical care preferences with health providers. Key points include: - ACP is a voluntary process that considers a person's values and wishes for end-of-life care if they become unable to communicate themselves. - Discussing future care preferences can align treatment with a person's goals and values and may reduce family stress after death. - Valid advance decisions to refuse treatment must be in writing, signed, and witnessed to be legally binding if a person loses capacity.

2. Who’s who?

3. Where are you? 0 5 10

5. Aims To raise your awareness and understanding of advance care planning (ACP) and to promote its PRINCIPLES as part of the solution to improving end of life care. This will include elements of advance decisions (ADRT), LPA’s, PPC’s, conversations To consider how to apply ACP to your workplace and the skills and competencies required to do so. To refer you to further tools, documents and resources about ACP that can assist you To look after you while you are here...

7. 3 key messages about advance care planning It ’ s not new, its out there….be ready and open and a little cautious too You are not on your own It is rarely a one off event- but a series of conversations held over time

8. Advance care planning

9. Continuing the conversation...... Mental Capacity Act

11. 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. (DoH, 2008)

12. Why Now? End of Life Care Strategy Alice Pyne Drive to reduce acute hospital admissions Health policy over last 10 years moving towards reducing hospital deaths (DoH, 2007, 2008).

13. Why Now? Public surveys demonstrate most people wish to die at home (DoH, 2000). Many receive good care & their preferences & wishes at End of Life (EoL) are met. However, many do not & do not die where they would choose. SW SHA funding for education in ACP- Hospiscare commissioned by NHS Devon to roll out 2010/2011

14. Why bother? Where is the evidence? Evidence to support that pre planning and using ACP is of benefit to most patients and families. Used extensively across the world. Can enable better service provision related to patient need May increase realistic hope and resilience Improve patient and carer satisfaction with care (greater control, empowerment and confidence in care giving) May reduce anxiety, depression and post traumatic stress in surviving relatives

15. ACP both an elephant and Bambi?

16. ACP is like a road map with a journey planned. Remember: the map is not always the territory!

17. How are you doing so far?

18. 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)

19. What is Advanced Care Planning? ACP is a voluntary process to which the patient must agree to and to sharing the information. It is a discussion about future care between an individual and their care providers(irrespective of discipline). The discussion is to make clear an individual ’s wishes and will usually take place in the context of an anticipated deterioration in the future.

20. What is ACP? It may include or clarify: Their understanding of their illness and prognosis, treatment options and availability of these. 2. Their wishes, values, beliefs and preferences or goals for care. Any concerns they may have. Goals of care when a person has lost capacity. Family and friends if person so wishes.

21. What is ACP? Conversations and requests should be clearly documented and then... Communicated to others in the care team including Out of hours teams. Be reviewed regularly and if the patient should change their mind in between reviews. ACP usually involves more than one team/discipline. Preferred Priorities for care (PPC) is the documentation used to record advanced care plans.

22. Preferred Priorities of Care (PPC) What is this document? What is its purpose? Who completes it? What is done with it? What if, after completing the PPC, the person becomes unable to make decisions? Is this document used to refuse treatment?

23. “ Contrary to concerns by GP’s about patients becoming distressed or rejecting the conversation, the study found 90% choose to continue the conversation when initiated by their GP. Patients who talked about their preferences with their GP were more likely to be placed appropriately on the EoL register, and have their preferred place of death & core preferences added to their medical records.” NCPC Project (2010) - ”dying to talk to your GP?”

24. Identification of EoL patients that may benefit- the when do we start? Many with chronic illness(s) reach a point where it is evident they are going to die from their condition. Other conditions can be difficult to accurately predict. Gold Standards Framework Prognostic indicators (GSF 2008) provides guidance.

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

27. 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

28. 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 for AA/DLA. At an assessment of an individuals needs, complex care package, carer distress, respite care. Admission to a care home.

29. Starting a conversation What might you say?

30. Initiating Discussions Timing & setting need to be right, privacy. Non-verbal Communication, eye contact, attentive listening. An open style of dialogue.. How do you feel things are with you? How do you see things going from here? Can you tell me how you would like to be best supported if you do not recover?/get less well? Have you thoughts/feelings about becoming less well? Are there things that would concern you should this happen? Go wish

31. Addressing Family & Friends How do you think he/she is compared to last time I came/last week? I feel he is less well and it concerns me.... Are there things you would like to discuss? Respond to cues/not to outside pressures; Listening is important. Summarise back the main points; check your understanding.

32. To Summarise Predicting prognosis is difficult – ‘gut instinct’ is important! Take the lead from the individual but may need to initiate; listen for the cues. Has to be a voluntary process. Check your understanding; Reflect back. Conclude and document; may change their mind later….REVIEW

33. Advanced Decision to Refuse Treatment (ADRT)

34. Core Competencies for ACP

35. Mental Capacity Act - 2005 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 Clarification of the law in relation to advance decisions to refuse treatments

36. Four tests Can they understand the information? Can they retain and believe 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? (i.e. can they consider benefits and burdens?) Can they communicate their decision by whatever means?

37. Points to remember Capacity is Decision Specific You must presume capacity unless evidence exists otherwise People should be supported to make their decisions Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms People are allowed to make “unwise or eccentric decisions”

38. Court appointed Deputies Independent Mental Capacity Advocates

39. Advance Decision to Refuse Treatment (ADRT) Made when a person over 18 has capacity. Will come into effect only when the individual has lost capacity to give or refuse consent. A decision relating to a specific treatment in specific circumstances. If it includes refusal for life sustaining treatments they must be in writing, be signed and witnessed and state clearly that “ the decision applies even if my life is a t risk”

40. ADRT Advance decisions that meet all the requirements of the MCA are legally binding (guidance available in code of practice for MCA) To be binding it must be both Valid and applicable. If binding, the person has taken responsibility for the decision If not binding, must still be considered when assessing best interests.

41. Useless ADRT “ If I go completely dotty just let me go and stop feeding me” Feeding is basic care which cannot be refused by an ADRT Too vague Still worth taking into account when planning a person ’s treatment in their ‘best interest’

42. Valid ADRT I now have MND and benefit from PEG feeding. As my condition deteriorates, if I should lose consciousness and am not expected to recover after 24hrs, I wish feeding, hydration and any other life prolonging treatment such as antibiotics to be withdrawn or withheld although medication such as painkillers for my immediate comfort can be used. This decision to apply even if my life is at risk ”

43. Valid ADRTs I wish to refuse the following specific treatments:- In these circumstances:- Artificial (mechanical) breathing machine If I have had a severe stroke with little chance of recovering consciousness Antibiotics If my dementia means that I cannot not make the decision, in the event that I have a severe chest infection that might threaten my life. Artificial feeding (via a tube or drip) When my dementia has deteriorated to the point that I cannot swallow safely, even with the help of others

44. When is an ADRT not valid? If medical treatment has changed significantly since the ADRT was made If it is not specific enough to include current circumstances – home, family and health If ‘out of date’ - good practice to update every 2 years If a LPA has been drawn up covering the same treatment If a person has recently behaved in a way to suggest they have changed their minds If there is any evidence of duress If there is any evidence the patient has withdrawn the ADRT

45. What can an ADRT not do? An ADRT cannot:- Request specific treatment Stop basic care nutrition/hydration by mouth basic cleanliness Ask a HCP to end or intentionally shorten a patients life

46. Lasting power of Attorney (LPA) An LPA is a statutory form of power of attorney is created by the MCA. A person with capacity can choose a person (an ‘attorney’) to take decisions on their behalf if they subsequently loose capacity. Two separate documents: Property and Financial Affairs Health and Welfare Must be registered with the Office of the Public guardian. (Therefore this may take time to put in place)

47. Resuscitation

49. Resuscitation- allow natural death (AnD) Are not obliged to offer treatment to pts that we think are futile. It is good practice to discuss this with patients wherever possible but..not if it is going to cause them distress and do them harm.

50. ACP and DNAR Success rates poorly understood Inappropriate resuscitations can lead to distressing, undignified deaths May result in transfer to hospital when death requested at home/care home ect May be part of a PPC/LCP which is not clarified/respected DNAR requests within an ADRT are not always accessible- and paramedic crews need to see a signed document to withhold resus attempt if responding to a 999 call.

51. Core Competencies for ACP

52. Questions to think about… Are you ready to be asked? If planning to instigate with someone….who might be best placed to do so? Is now the right time? Which aspects do I raise and which do I feel competent to respond to? Who else might need to be involved? Which documents/tools (if any) might be useful for this patient/client/user/carer? What support is there for me?

53. Summary points The process of ACP can enable people to think about, discuss and have their wishes recorded in advance of an anticipated decline in their health. ACP conversations and documents can be referred to if/when a person lacks the capacity to make a decision about their care and treatment. However, it also guides and can instruct loved ones, health and social care staff to plan and deliver appropriate and realistic care for each individual. Not desirable for everyone. We need to think critically about if, how and when we implement ACP into practice and our assessments.

54. So..ACP is more likely to benefit people when it takes place:- At the right time Within the right environment Using the right skills For the right reasons

55. My ADRT Last night my husband and I were in our sitting room. I said to him “I never want to live in a persistent vegetative state, dependent on some machine..and fluids from a bottle” He got up, unplugged the computer and threw out my wine

56. What's happening in Devon? End of life register is now live (Adastra) Preferred priorities of care (PPC) and Advanced decision to reuse treatment (ADRT) documents are approved for NHS Devon Just in Case bags are in all GP practices across Devon GSF in practices and nursing homes New community worker in EOL care pilot Working to develop a Devon wide DNAR policy probably a treatment escalation plan (TEP)