ACP Learning Pack

1. ACP Learning Pack Session Two ACP Learning Pack. Session Two

2. What about your care in the future? • What is important to you? What would you want staff to know about looking after you? • What particular wishes do you have about how, where or by whom you want to be treated? • Think about your own health care in the future. Are there aspects of treatment you might not want to receive? How would you describe the circumstances under which you would want treatment to be withheld? ACP Learning Pack. Session Two

3. What the research shows - 1 “Advance statements can aid personal integrity and help the families of older people” • Some people felt that completing an advance statement could increase choice and autonomy. • Some people thought that if discussions and decisions had been made in advance, then it could reduce the stress if such a situation occurred. • Some people thought it could be helpful to make an advance statement in case you developed dementia and could not make decisions for yourself. Seymour J et al (2004) ‘Planning for the end of life: the views of older people about advance statements’. Social Science and Medicine. Vol 59. No 1. P 57 - 68 ACP Learning Pack. Session Two

4. What the research shows - 2 “Advance statements and euthanasia” • Some people were concerned that writing an advance statement might be interpreted as euthanasia. “Concerns about the future applicability of advance statements” • Most people thought it might be difficult to imagine suffering from a serious illness. • Others thought that you need to think about it in good time and plan while you can. Seymour J et al (2004) ‘Planning for the end of life: the views of older people about advance statements’. Social Science and Medicine. Vol 59. No 1. P 57 - 68 ACP Learning Pack. Session Two

5. What the research shows - 3 “Worries and difficulties in thinking about and discussing death and dying.” • Some people had already thought about their own death and dying, but others had not. • Most people thought that family members could consent or refuse treatments on their behalf and so did not initially see the reason for an advance statement. • Others thought that it should be discussed within the family beforehand so their wishes were known and recorded. Seymour J et al (2004) ‘Planning for the end of life: the views of older people about advance statements’. Social Science and Medicine. Vol 59. No 1. P 57 - 68 ACP Learning Pack. Session Two

6. What the research shows - 4 “The need to build trusting relationships with clinicians” • People thought that doctors needed to be able to exercise discretion and make decisions on their behalf. • People recognised that they wanted control and autonomy over their lives, but also to be able to put their trust in clinicians at times of vulnerability. Seymour J et al (2004) ‘Planning for the end of life: the views of older people about advance statements’. Social Science and Medicine. Vol 59. No 1. P 57 - 68 ACP Learning Pack. Session Two

7. Views from care home residents- 1 Appropriate for staff to ask • ‘I can’t see into the future, so it’s a good thing for staff to ask about your wishes for the future.’ • ‘I personally think it’s essential for them (staff) to be involved with what people think and then it’s up to people to say “I don’t want to discuss it” • ‘I felt comfortable by the questions on the form’. • ‘It’s a sensible thing to do.’ ACP Learning Pack. Session Two

8. Views from care home residents - 2 Assurances for their care in the future “Do not strive to keep (me) alive”….That is what I wish. ‘I don’t want to go to hospital unless I have to.’ A formal way of stating what residents wanted. ACP Learning Pack. Session Two

9. Views from care home residents - 3 • Relative involvement • ‘I discussed it with my daughter’. • ‘I didn’t involve relatives – I was clear what I wanted.’ GP involvement • ‘…..and I have talked to Doctor’ • ‘….happy for my GP to have a copy’ ACP Learning Pack. Session Two

10. What do you think about discussing these issues? What are your potential worries and difficulties? • Discuss in your twos or threes and write down the 3 points which you think are the most important. These may have come from your own discussions or from hearing the views of older people in the research and informally. ACP Learning Pack. Session Two

11. Views of care home managers and staff - Reactions from residents “Very positive, realistic, sensible.” “On the whole (ACP) is very positive. People have very clear views of their wishes and seem pleased to express them.” “I have found once the process is started everyone concerned finds the subject easier to discuss.” “I think some people, are quite relieved when you ask the questions. When its brought up they’re quite pleased.” “They want say what they want to say while they’re able, while they’re able to do it.” “Others just really don’t want to know – they would rather someone else dealt with it.” “Many people have not even thought about it at all – so for these people it begins the process of them doing so and the idea that we need to know.” ACP Learning Pack. Session Two

12. Views of care home managers and staff - Reactions from people close to residents (relatives):- “Relief, positive, pleased there is a formal process.” “They also have thought it a good idea if they have strong views.” “Some are relieved it’s (an ACP) in place because they’ve been worried that their relative would go into hospital and that’s not what they wanted.” “Some get a bit upset thinking that its going to happen any moment, but on the whole positive.” “Relatives seem to find it most difficult and some even seem suspicious.” “Its important to talk about reviews and that things can be changed at any time.” ACP Learning Pack. Session Two

13. Involving GPs • “We have close links with the surgery and they have been involved in setting it up here.” • “I think as well it gives you a little bit more confidence because…say…the GP comes in and they’re busy…and you get this “Right, we’ll do this and we’ll do that” and they’re out of the door! If you’ve got the form and you’ve discussed it with the person and you know exactly what they want you can actually say “Hold on a minute!”.” • “We’ve got one GP who wouldn’t really want to be discussing things like that. He doesn’t like people refusing treatment because he doesn’t think they should be able to.” ACP Learning Pack. Session Two

14. Individual views • “Some of the questions I find a bit hard to bring up. I think the more you do, the more comfortable you get with it.” • “You feel relaxed and comfortable and know what they want and you can carry out their wishes.” • “In the beginning I was a little bit sceptical, but now I think it’s a very good idea.” • “It formalises what we already do and supports decisions that are made in the resident’s best interests.” • “Some of us were a bit apprehensive about how we were going to go in and actually start the conversation rolling.” • “It was easier to talk while people were in good health because the emotions weren’t there.” • “I think that families, especially the children, don’t want to talk about it to Mum & Dad and I think in a lot of cases Mum & Dad want to talk about it because they want to put things in order.” ACP Learning Pack. Session Two