Consultation Issues In Palliative care and Advanced Care Planning

1. Consultation Issues In Palliative care and Advanced Care Planning Pete Nightingale Macmillan GP

2. Why Bother? I firmly believe that the skills we already use on a daily basis work very effectively in palliative care These skills have been refined and well taught in primary care and are in many ways more advanced than in any other speciality because we work in a time constrained environment

3. The Disease - Illness Model (1984) Patient Presents Problem Gathering Information Parallel search of two frameworks Illness framework Disease framework Understanding patients experiences Differential Diagnosis Integration Explanation & Planning

4. The Calgary -Cambridge Approach to Communication Skills Teaching (1996) • Initiating the Session • Gathering Information • Building the Relationship • Explanation and Planning • Closing the Session

5. Gathering Information Information is needed from 2 perspectives:- 1)The patients perspective-sometimes called the illness agenda 2)The healthcare workers perspective-sometimes called the disease agenda It is often most effective to deal with the patient’s agenda first

6. Understanding The Patients Perspective Why bother? • There is evidence for Morbidity reduction (Headache study group etc) • There is an increase in patient satisfaction and compliance (Stewart(1984))etc. • 20% of diagnoses are aided by eliciting patients ideas of causation (Peppiatt(1992))

7. Two ways to discover Patients perspective • Picking up verbal and non verbal cues • Asking about:- • Ideas • Concerns • Expectations • Effects • Feelings

8. Ways to pick up verbal and non-verbal cues • Repetition of cues • ‘upset?’ • ‘something could be done?’ • Picking up and checking out verbal cues • ‘you said you were worried it may be something serious-what did you have in mind?’ • Picking up and checking out non-verbal cues • ‘Am I right in thinking you are quite upset about the explanation you have had in the past?’

9. IDEAS ‘ what you think may have started this pain?’ ‘is there anything you think that may have made this problem worse?

10. Concerns • Is there anything in particular about this disease that is worrying you? • ‘Some people with cancer find that they get worries about certain things-has that happened to you?

11. Expectations You’ve clearly given this some thought, what were the most important things you were hoping I may be able to do to help you with these problems?’ ‘How do you see things developing from here?’

12. Effects ‘How are these symptoms effecting your life at present?’ ‘What do you find most helpful to support you when you have all this to deal with?’

13. Feelings Of particular importance in serious illness and palliative care:- ‘I sense you are upset/angry/tense, would you like to talk about it?’ ‘Some people with cancer get depressed, or anxious-has that happened to you?’ ‘Do you find there is anything you can still look forward to?’

14. How to stop a downward spiral ‘I think I understand a little more of what you have been feeling. Let’s look at the practical things we can do to help?’

15. Disease Agenda:- 4 main symptom areas to remember • Pain • Nausea/vomiting • Breathing • Agitation/Confusion But please don’t forget other areas for people not in the dying phase of their illness

16. Disease Agenda • Pain • Nausea / vomiting • Appetite • Breathing/cough • Bowels • Bladder • Mouth • Swallowing • Mobility • Oedema • Sensation in Legs • Pressure areas • Sleep • Confusion

17. Use of a Summary • One of the most important information gathering skills • It is the key method of ensuring accuracy because:- 1)It demonstrates you are interested and have listened 2) It invites the patient to confirm or correct your interpretation 3)We can pause and formulate our thinking in both disease and illness frameworks

18. Gathering InformationSummary • Check out I.C.E. with Effects and Feelings • Have a ‘palliative care sieve’ of disease specific questions to ensure nothing important is missed • Summarise with the patient

19. Building The Relationshipwith palliative care patients

20. Developing Rapport • Again only 3 main skills to consider • ACCEPTANCE • EMPATHY • SUPPORT

21. Developing Rapport • Acceptance • Acknowledge legitimacy of patients view • Non-judgementally accept view • Value contribution • ‘Yes, but….’ can negate acceptance-try using silence • Acceptance is NOT agreement

22. EMPATHY • Empathy can be learned • It overcomes the patients isolation in their illness • It is therapeutic in its own right • Communicated by linking the ‘I’ and the ‘you’ • ‘I can see how difficult this pain is for you’

23. Sympathy and Empathy • Empathy is seeing the problem from the patient’s position • Sympathy is a feeling of pity or concern from outside the patients position

24. Supportive approaches • Concern • Understanding • Willingness to help • Partnership • Acknowledge coping efforts and self care • Sensitivity

25. Summary-Building the relationship • Non verbal communication • Demonstrates appropriate non verbal behaviour • Use of notes • Picks up Cues • Developing Rapport • Acceptance • Empathy and support • Sensitivity • Involving the Patient • Sharing thoughts • Provide rationale • Examination

26. Breaking Bad News Basically involves finding out what the patient knows already and what else they want to know

27. 10 Step model (Based on the work of Peter Kay) • Preparation Know all the facts before the meeting, find out who the patient wants present and ensure privacy

28. 2. Whatdoesthepatientknow? Ask for a narrative of events by the patient (eg ‘What has happened since we last met?’ or ‘what did they tell you after the endoscopy?’)

29. 3. Ismoreinformationwanted? Test the waters, but be aware that it can be very frightening to ask for more information (e.g. 'Would you like me to explain a bit more?')

30. 4. Giveawarningshot e.g. 'I'm afraid it looks rather serious', then allow a pause for the patient to respond.

31. 5. Allowdenial Denial is a defence, and a way of coping. Allow the patient to control the amount of information.

32. 6. Explain(ifrequested) Narrow the information gap, step by step. Detail will not be remembered, but the way you explain will be.

33. 7. Listen to concerns • Ask, 'What are your main concerns about this that we need to deal with?' and then allow space for expressions of feelings.

34. 8. Encourage ventilation of feelings • ‘I am very sorry about this news, this must be very hard for you, how are you feeling?’ • This is the KEY phase in terms of patient satisfaction with the interview, because it conveys empathy.

35. 9. Summarise and plan Summarise concerns, plan treatment together, foster hope.

36. 10. Offer availability Most patients need further explanation (the details will not have been remembered)

37. Are we in effect delivering Spiritual Care? • Service given to others has been described as "love in action". • As such all health care workers could be regarded as providing spiritual care.

40. Helping with Love/Positive Regard • Being genuine • Respecting the patients individuality • Deep listening • Attentive silence, • To listen with the whole of our being. • We should avoid giving "answers" • Expressing empathy, warmth and positive regard.

41. Helping with finding Meaning"He who has a why to live for can bear almost any how" (Nietzsche). • A useful working framework is The "4 R's", described in "A Handbook for Mortals"by Dr Joanne Lynn and Dr. Joan Harrold . • Remembering • Reassessing • Reconciling • Reuniting

42. To die healed We need to be allowed to express • I love you • Forgive me • I forgive you • Thank you • Goodbye

43. Overall Summary • You already use all the skills needed in palliative care • I hope we have refined some of these skills that can be particularly helpful in this setting. • Remember ICEEF, ‘palliative sieve’ and collaborative approach to problem solving with the patient.

44. GSF-Going for Gold 2012 is an important milestone in the UK as we become host nation for the next Olympics Games, that symbol of life-affirming health. 2012 also marks a demographic milestone as the number of deaths in the UK is predicted to soar by over 17% for then next 20 years, until deaths outnumber births in about 2032