Thinking Ahead – End of Life Communications in Advance Care Planning Workshop

1. Thinking Ahead – End of Life Communications in Advance Care Planning Workshop Joy Tyrer Caroline Hewitt

2. Aims of workshop • Raise awareness of what an Advance Care Plan is • Develop an understanding about the positive aspects of Advance Care Planning. • Promote insight into the issues around communication and the confidence to start the Advance Care Planning process with patients/clients.

3. Recap AIMS of the workshop • Raise awarenessof what an Advance Care Plan is: Tool to encourage pre planning of care About patient wishes/ preferences Promoting knowledge of process Links with Mental Capacity Act • Develop an understanding about the positive aspects of Advance Care Planning: Enables better provision of service related to patient need Gives hope & empowerment Promotes patients best interests & honest communication • Promote insight into issues around communication and the confidence to start the Advance Care Planning process with patients/clients: Encourages deeper conversations at an important time Need for empathy Individualised approach Patient/client led so they remain in control Identify and link into patient’s communication style/develop rapport

4. Case Study • Arthur Dent is a 65 year old gentleman who has diabetes and smokes between 10 -20 cigarettes a day. He lives on his own since his wife died 2 years ago from cancer but he has a 25 year old daughter who lives near by. He has a history of ischaemic heart disease which was first diagnosed 10 years ago and he underwent a coronary artery bypass operation 5 years ago. He was recently admitted to hospital suffering severe chest pain and was diagnosed as having had a large anterior myocardial infarction (heart attack). He has been treated with intravenous inotropic drugs and nitrates during his admission. 5 days into his admission his condition is deteriorating and his echocardiogram still shows severe heart weakness. The team have reviewed his condition and his Doctor is planning to talk to him about his care because his chances of coming through cardiopulmonary resuscitation successfully are very poor.

5. White hat (factual) • Dr. Hello Mr Dent. I would like to talk to you about your treatment options, is that ok with you? • Pt. Yes, that’s ok Doctor. • Dr. OK. If your heart goes into a fast rhythm would you want us to re synchronise it? • Pt. Oh! My goodness is it likely to do that? • Dr. Well it could go into a fast rhythm which we could treat with defibrillation and intravenous drugs. Otherwise the electrical activity in your heart could just stop. • Pt. What does that mean? Would I be dead then? • Dr. Yes, technically but there are things that we could do to try to revive you. In your case though, this may not be the best option. Would you like me to explain to you what could happen in detail? • Pt. If there are things that you could do I want you to do them!

6. Red hat (intuition, hunches, feelings) • Dr. Hello Arthur. • Pt. Hello Doctor. • Dr. How do you feel about your condition? • Pt. Well I’m feeling better today because I was able to have a good wash this morning and I feel as though I have a little more energy. I also had a little breakfast so that’s bound to help isn’t it? • Dr. Yes, that sounds good. But how do you feel that you are progressing generally? • Pt. I suppose not that well really. I know that my heart isn’t working properly and I worry that it won’t get any better, I don’t know if I have any hope now? • Dr. What would give you hope? • Pt. My wife died 2 years ago and I worry about my daughter and how she feels about my condition with it deteriorating. I would like to know how my daughter feels but I’m afraid to talk to her about it. • Dr. Would it help you if we talked to you and your daughter about possible courses of action that we can take when we are caring for you, so that you are both more prepared for if you don’t get better? • Pt. Nods • Dr. We can talk about the possible next steps in your treatment and we can help you and your daughter to make some decisions about how you want to be treated. This may help you and your daughter to discuss the possibility of your death and how she would cope with that. • Pt. Yes, I think that I would like that.

7. Green hat (possibilities, alternatives, creativity) • Dr. Hello Mr Dent. • Pt. Hello. • Dr. I would like to discuss with you your options for your care with us. As you know we are treating your heart with drugs to help your heart to work better and we will continue to do that. I would like to let you know though that you have some options for if your condition should change or if you should become more ill, would you like to hear what these are? • Pt. Yes please. • Dr. Ok. There is a possibility that your heart could stop suddenly, if this happens there is a chance that we could revive you but the risk is that your brain could be damaged when you wake up. • Pt. I really wouldn’t want that for myself or for my daughter. But if you don’t resuscitate me it doesn’t mean that you are not doing everything to get me well again does it? • Dr. No definitely not. We are doing everything that we can to strengthen your heart. Maybe you would like to talk to your daughter about it and then we can record your wishes in your notes about how you would wish to be treated if your heart stops.

8. Communication skills – being PREPARED • P – prepare for the discussion • R – relate to the person • E – elicit patient & carer preferences • P – provide information • A – acknowledge emotions & concerns • R – realistic hopes • E – encourage questions • D - document

9. Case Study Analysis • White Hat Facts are necessary but not as an opening statement unless it is initiated by the patient. This is Doctor driven without rapport with the patient. The patient is not ready for the information. This perpetuates the patient’s lack of control over the situation. • Red Hat Open questioning about feelings lack direction. Good opening chat to establish rapport. Leading question needed to get back on track. Patient gives a clue that he wants information by saying ‘I know that my heart isn’t working properly and I worry that it won’t get any better, I don’t know if I have any hope now?’ Although the conversation is steered to Advance Care Planning, the patient is left with a plan to pick this up in the future with his daughter. • Green Hat The patient is more ready for information. It encourages patient control. The patient has the power and controls and the Doctor is steering the conversation.

10. Conclusion • A bit of each hat is appropriate to use at different times. It is important to accommodate the patient’s communication style and agenda and to obtain and maintain rapport and honesty in communication. If this is achieved it is easier to address these issues effectively. Advance Care Planning is a key part of the solution to improving end of life care.