Communication Skills Advance Care Planning

1. Communication Skills & Advance Care Planning Bradford & Airedale Managed Clinical Network End of Life / Palliative Care Education Programme

2. Aim To discuss and review the principles of effective communication To explore and understand the principles of Advance Care Planning and Preferred Priorities of Care

3. Ground rules Confidentiality Participation Respect for others’ opinions Permission to take time out Mobile phones on silent Anything else? …

4. Communication Skills

5. Case study 1

6. Case study 1 Jane Williams lives alone; she is 60 with known ca lung and bone metastases. Admitted to hospital several days ago for pain control. She has 1 son Scott who lives 25 miles away, he can only visit 2-3 times a week as he has no transport, his partner is pregnant & they have 3 children. Jane’s condition deteriorates with increasing pain, confusion and hallucinations. Unknown to ward staff she has been phoning Scott overnight confused & distressed.

7. Case study 1 The following day Scott arrives on the ward. He is angry as he says no one will give him information over the phone about his mothers’ condition. He is demanding to speak to the medical staff as he wants to know “what is going on” with his mother. There are no doctors available to speak to him. What are the issues? What do you do?

8. Anger Common emotion – perceived loss of control Often accompanied by feelings of guilt or depression Often misdirected towards health care professionals; can be angry at what we represent To deny patients / family the right to be angry in distressing circumstances is naïve and disrespectful

9. What is Advance Care Planning?

10. Advance Care Planning What is advance care planning? Why has it risen on the agenda nationally? How can we make it happen?

11. Advance Care Planning A process of discussion between an individual and their care providers Last phase of life (up to 1year) The process is voluntary The content should be determined by the individual with agreement discussions should be: documented regularly reviewed communicated to key persons involved in their care

12. National perspective Choice Agenda End of Life Strategy (2008) NICE Supportive & Palliative Care (2004) Darzi Mental Capacity Act (2005)

13. ACP – why is it important? Not yet getting it right with care towards the end of life Pre-planning of care is a means to improve this Research evidence that it is of benefit to patients

14. What might be included in an ACP Persons understanding of their condition and likely progression Who to talk to in the event of not being able to communicate Lasting Power of Attorney (LPA) Advanced Decision to Refuse Treatment (ADRT) Health care preferences : CPR, Artificial nutrition, ventilation, life sustaining treatments A will and where its kept Where & how you would like to be cared for Place of death Any wishes for after death e.g. tissue donation

15. What could be included…. “If I am being washed, I prefer showers to baths I am allergic to lanolin; please don’t put me in lambswool clothes or give me hand cream with lanolin in it I hate boiled eggs, and I love Bovril I want to stay at home as long as I can I don’t like EastEnders. Never have. Never will. I like the Rolling Stones. And I like The Archers I love dogs I am frightened of injections and needles Please could my grandson look after the cat?”

16. Advance Care Planning and the Mental Capacity Act

17. Advance Decisions to Refuse Treatment Use to be called ‘living wills or advanced directives’ Requirements quite specific in stating exactly which treatments and what circumstances Have to be in writing if they are refusal of life sustaining treatments Must acknowledge that refusal has the potential to limit life Only come into force when an individual loses capacity Are legally binding if applicable Show the example ADRTShow the example ADRT

18. Lasting Power of Attorney Nominating a person (whilst you have capacity) who can legally make decisions on your behalf once it is judged you do not have the capacity to make this decision yourself Can be for property or personal welfare Can be for some or all decisions Must be registered with OPG to be legally binding

19. LPA - costs £120 to register Exempt if income < £12,000 Full fee if income > £16,500 £25 to search register for an LPA SHOW the example copy of LPASHOW the example copy of LPA

20. Advanced statements of wishes and preferences Can be verbal only Best practice is to agree with patient to document them somewhere so they can be communicated and acted upon - could be in medical or nursing notes - could be in PPC document Used to make best interest decisions on behalf of patients

21. PPC Document Requires explanation and guidance intended to be filled in by the individual Intended to be patient held Show example of PPC documentShow example of PPC document

22. Best Interest Decisions MCA STATUTORY CHECKLIST • Not merely by reference to age, appearance, condition, or aspect of behaviour, • Consider: Person’s past & present wishes & feelings, beliefs and values (including any written statement) Any other factors patient would consider if able to • Take account, if practicable, of the views of: Any holder of an LPA or any Court Appointed Deputy Anyone named by patient as someone to be consulted Anyone engaged in caring for patient or interested in his welfare

23. Local Experience Most patients value the discussions Most patients have want you to document their wishes in medical records and communicate it to others involved in their care Most patients don’t want to make an LPA or ADRT Most patients have not wanted to use the PPC document People can usually express a preference for where they would like to be cared for or die

24. ACP - Making it happen Identifying patients in a timely fashion Having knowledge of how an illness may affect a person in the long term Ensuring the individual is given the opportunity to have discussions if they wish Who is best placed to have these discussions

25. Mental Capacity Act Quiz

26. Understanding Advance Care Planning (ACP) & Preferred Priorities of Care (PPC)

27. Case Study 2 Michael is a 60 year old gentleman who presented to his GP with difficulties in carrying out his job as a painter and decorator due to weakness in his hands and difficulty climbing a ladder. Subsequent investigations via neurologist revealed a diagnosis of Motor Neurone Disease. He understood from what he was told at the time of diagnosis that his likely life expectancy was 9 -12 months.

28. Question 1 WHAT SORT OF CHOICES IS MICHAEL LIKELY TO BE FACED WITH IN THE NEXT 12 MONTHS?

29. CHOICES – health care

30. KEY MESSAGE Some choices are disease/condition dependant All choices are personal To help a person make choices you need to know: what the likely/possible progression and prognosis of the disease The person, what they know and understand, how they like to make choices

31. POSSIBLE SCENARIOS Think About how you could capture these decisions in an advance care plan. 1st box – what are the pros and cons to this, even communicating with team you have had this discussion is important. Could you start very gentle eg who else would be important in helping you make decisions 2nd box – could write something in a PPC -an advanced statement. Then could encourage to write about the sort of thing that would make his life ‘intolerable’ 3rd box – Could make a ADRT Box 4; could make a LPA personal welfare Think About how you could capture these decisions in an advance care plan. 1st box – what are the pros and cons to this, even communicating with team you have had this discussion is important. Could you start very gentle eg who else would be important in helping you make decisions 2nd box – could write something in a PPC -an advanced statement. Then could encourage to write about the sort of thing that would make his life ‘intolerable’ 3rd box – Could make a ADRT Box 4; could make a LPA personal welfare

32. What Michael Decides Michael decides to make an advance care plan stating some of his preferences around type of care. He also makes a statement …. “If I become dependent on others for all my daily care needs and I am unable to communicate my wishes I would not want treatment for illnesses which would extend my life such as antibiotics for chest infections, artificial feeding/ fluids or support for my breathing... I would want to be kept comfortable and die with my family around me at home if possible”

33. What Michael Decides Makes an ADVANCE DECISION TO REFUSE TREATMENT PEG feeding NIPPV

34. What Happens Next Over the next six months he becomes progressively weaker and more dependent on his wife and district nurses to provide care for him in his home to which he had become confined. Develops some difficulties with swallowing and there are concerns about his nutrition.

35. Question 2 HOW WOULD YOU APPROACH THIS SITUATION?

36. KEY MESSAGES KEEP COMMUNICATING! ADRTs do not become active until a person has: Lost CAPACITY to make or communicate a specific decision The MCA Code of Practice states: Every effort must be made to enable a person to communicate their wishes

37. The story continues 2 months later Michael has lost his ability to communicate with speech and is unable to use communication aids as he does not have the muscular dexterity. Developed problems with shortness of breath, which are likely to be due to his MND.

38. Question 3 IF YOU WERE CARING FOR MICHAEL HOW WOULD YOU PROCEED? READ ACP TALK TO WIFE AND ANY OTHERS IDENTIFIED IN ACPENSURE OOH FORM IN PLACEENSURE DNAR FORMENSURE ANTICIPATORY DRUGS IN PLACE REVIEW CARE NEEDS ?WILL FAMILY NEED ADDITIONAL NURSING SUPPORT AS PATIENT DETERIORATESENSURE FAMILY ARE CLEAR OF PLAN IF DETERIRATES ie WHAT THEY CAN DO, WHAT MEDICATION THEY COULD GIVE, WHO TO CALLREAD ACP TALK TO WIFE AND ANY OTHERS IDENTIFIED IN ACPENSURE OOH FORM IN PLACEENSURE DNAR FORMENSURE ANTICIPATORY DRUGS IN PLACE REVIEW CARE NEEDS ?WILL FAMILY NEED ADDITIONAL NURSING SUPPORT AS PATIENT DETERIORATESENSURE FAMILY ARE CLEAR OF PLAN IF DETERIRATES ie WHAT THEY CAN DO, WHAT MEDICATION THEY COULD GIVE, WHO TO CALL

39. KEY MESSAGE ADVANCE CARE PLANS NEED APPROPRIATE, TIMELY ACTION TO ENABLE THEM

40. CHOICES IN DYING

41. Understanding ACP and the PPC COMPLETING A PPC

42. Planning for the future Imagine or think of a patient in your care who has COPD (or another chronic progressive illness) which is from your point of view affecting the patients QOL significantly and adversely You are visiting them to monitor their treatment and they are now reasonably stable. You want to discuss ‘advance care planning’ with them. How would you approach this: think about your general approach, how you would approach such a discussion? what words or phrases may be useful Thinking about opening a dialogue with a patient who may not have really grasped that the condition is progressive.Thinking about opening a dialogue with a patient who may not have really grasped that the condition is progressive.

43. Patient responses to ACP Has not and does not want to discuss future choices and plans Wants to discuss some but not all aspects Would like to make a verbal statement about their wishes Would like to document their wishes – PPC document

44. Professionals – Approach to ACP Do you know what is likely to happen to this patient in the future? - immediate, hrs - days - weeks - short term, weeks - months - longer term, months - years What would the patients preferences be in these circumstances

45. Professionals – Approach to ACP Explore empathetically Suggest Realistic Goals Complete forms OOH/DNAR/PPC Review and revise periodically

46. How can we facilitate patient discussion and choice? Listen and respond General information leaflets Presenting scenarios Discussing patients views of how peers have been cared for Longer term raising public awareness and encouraging them to discuss with family members

47. KEY MESSAGES ACP is a PROCESS The Process takes different amounts of TIME depending on the individual The process needs MONITORING because: People change their minds Doesn’t and probably shouldn’t be done in one conversation – but can sometimes! – so time varies greatly Needs to be followed upDoesn’t and probably shouldn’t be done in one conversation – but can sometimes! – so time varies greatly Needs to be followed up

48. Loss and Bereavement

49. Bereavement risks

50. Case study 4 Gillian is 29 years old with metastatic malignant melanoma Recently had radiotherapy for brain metastases Multiple skin lesions, no further treatment available Re-admitted to hospital acutely, semi-conscious with severe headaches, nausea & vomiting.

51. Case study 4 CT scan reports multiple brain metastases which she has bled into She has had 3 days of IV dexamethasone with little / no improvement Syringe driver insitu for symptom management, however she continues to complain of headaches and has varying response levels

52. Case study 4 Lives with her mum, dad & Ben (7 yr old son) She has limited contact with her ex-partner Her parents are worried that she is not improving and ask if she is dying. They are also not sure what to tell Ben. What are the issues? What do you do?

53. Dealing with Difficult Questions Acknowledge difficult area and great deal of uncertainty Explore underlying concerns/fears May be appropriate to discuss signs to expect when death is approaching Avoid dates!

54. Dealing with Difficult Questions Knowing helps patients / families set realistic goals Protecting patients / families from reality can create more problems in the future Truth about a patients future is vital if patients are to be permitted the dignity of how to spend their remaining time

55. Withholding/withdrawing treatment Follow the Mental Capacity Act and take into account all factors including: person’s wishes, feelings, beliefs and values views of those close to or caring for patient Make sure that you can justify the decision to withdraw / withhold as being in the person’s best interests

56. Communicating with Children Children are pragmatic and often demand information in a direct way Same information needs as adults but require it in easily understandable form Children are as individual as adults. Different ages assimilate information in different ways

57. Communicating with Children Parents often need help, guidance and support to allow them to break bad news Children require and should receive same ethical standards of honest information Natural feeling of protection can generate situations of collusion Written information, books and websites can be accessed for parents and children

58. Case study 5 Mr Ali is a 73 year old Bengali gentleman who is unable to speak English. He has a supportive family (2 wives; 2 daughters and 4 sons). He was admitted to hospital 4 weeks ago with pneumonia Past medical history: Diabetes Heart failure Chronic renal failure

59. Case study 5 During his admission he was diagnosed with lung cancer which was discussed with the family. They insist he must NOT be informed under any circumstances as they say “he will give up” A family member is present with him at all times. The family want to take him home What are the issues? What do you do?

60. Collusion Act of love or need to protect? Almost always avoidable if patients are consulted first Explore reasons for collusion Assess the relatives understanding of disease and its impact Acknowledge the difficulty of relatives situation

61. Collusion May worsen if professional insists that it is his/her duty to inform patient and ignores relatives concerns Consider potential consequences and harm of not telling: personal cost to relative Isolation of patient poor standard of health care

62. Dealing with collusion Negotiate access to patient to check their understanding of situation Promise not to give unwanted information Arrange to talk again and raise possibility of seeing together It is very common to find that the patient is aware and also colluding, or at least suspicious of the truth

63. Cultural issues Interpreters – should be integral part of care Cultural awareness & understanding of others beliefs, views etc…. Consideration of religious / spiritual needs (seek assistance if needed)

64. Key Message Good communication is about listening Effective communication will improve with experience