1. ADVANCE CARE PLANNING

2. ACP – why is it important Not yet getting it right with care towards the end of life Not yet getting it right with care towards the end of life Pre-planning of care a means to improve this Pre-planning of care a means to improve this Close relationship to implementation of Mental Capacity Act Close relationship to implementation of Mental Capacity Act Research Evidence that it is of benefit to patients. Research Evidence that it is of benefit to patients.

3. Used extensively across the world Used extensively across the world Enables better provision of service related to pt need Enables better provision of service related to pt need Empowers and enables pt and family Empowers and enables pt and family Some find it increases ‘realistic hope’ and resilience Some find it increases ‘realistic hope’ and resilience Encourages deeper conversations at an important time Encourages deeper conversations at an important time

4. The Calman Gap (Journal Medical ethics, 84,10,124 -127) EXPECTATION REALITY

5. Goals of ACP Ensuring that clinical care is in keeping with patients preferences when the patient has become incapable of decision making Ensuring that clinical care is in keeping with patients preferences when the patient has become incapable of decision making Improving the health care decision making process by facilitating shared decision making Improving the health care decision making process by facilitating shared decision making Improving patients’ well being by reducing the frequency of either under or over treatment Improving patients’ well being by reducing the frequency of either under or over treatment

6. Research Evidence Associated with death in place of choice and use of palliative care 1-3 Associated with death in place of choice and use of palliative care 1-3 May increase a sense of control 4 May increase a sense of control 4 May increase congruence between preferences and treatments 5,6 May increase congruence between preferences and treatments 5,6 Narrow interventions focusing on AD completion not as successful as complex,multiple interventions Narrow interventions focusing on AD completion not as successful as complex,multiple interventions 1. Ratner E et al Jof the American Geriatric Society 2001:49; 778 1. Ratner E et al Jof the American Geriatric Society 2001:49; 778 2. Dengenholtz HB et al Annals of internal medicine 2004:141; 113-117 2. Dengenholtz HB et al Annals of internal medicine 2004:141; 113-117 3. Caplan GA et al Age and Ageing 2006 ; 35:581-585 3. Caplan GA et al Age and Ageing 2006 ; 35:581-585 4. Morrison RS et al J of the American Geriatric Society 2005 :53(2): 290-294 4. Morrison RS et al J of the American Geriatric Society 2005 :53(2): 290-294 5. Hammes b, Rooney B.Archives of Internal Medicine 1998 ; 158:383-390 5. Hammes b, Rooney B.Archives of Internal Medicine 1998 ; 158:383-390 6. Molloy DW et al JAMA 2000 :283(102): 1437-1444 6. Molloy DW et al JAMA 2000 :283(102): 1437-1444

7. Research Evidence ACP may improve patients quality of life by contributing to: Mutual understanding Mutual understanding Enhancing openess Enhancing openess Enabling discussion of concerns Enabling discussion of concerns Enhancing hope Enhancing hope Relieving fears about the ‘burden’ of decision making Relieving fears about the ‘burden’ of decision making Strengthening family ties Strengthening family ties

8. Models of Advanced Care Planning TraditionalPurpose Prepare for incapacity Focus Written Advanced Directive (refusal of treatments) Context Doctor/patient relationship Developing Preparing for death Achieving control, dignity Strengthening relationships Relieving burden of decision making Wider focus eg preferences around place of care, things you would like Patient/family/professional carers

9. What should be included Advanced care planning should emphasise not the completion of directives but the emotional preparation of patients and families for future crises… Advanced care planning should emphasise not the completion of directives but the emotional preparation of patients and families for future crises… Then when the crisis hits,physicians should provide guidance, should help make decisions despite the inevitable uncertainty, should share responsibility for those decisions, and above all should courageously see patients through the fearsome experience of dying. Then when the crisis hits,physicians should provide guidance, should help make decisions despite the inevitable uncertainty, should share responsibility for those decisions, and above all should courageously see patients through the fearsome experience of dying. Controlling death – the false promise of Advanced Directives. Harold S Perkins Annals Int Med 07 147:51-57

10. What should be included Do you know what is likely to happen to this patient in the future? 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 - longer term, months - years What would the patients preferences be in these circumstances What would the patients preferences be in these circumstances How important is it to communicate this to others How important is it to communicate this to others How will you do that? How will you do that?

11. What should be covered (professionals viewpoint) Patients understanding, do they want or need more information Patients understanding, do they want or need more information How much do they like to be involved in decisions and planning care How much do they like to be involved in decisions and planning care Who would they want us to talk to if they weren’t well enough Who would they want us to talk to if they weren’t well enough Any ADRT or LPA ? Any ADRT or LPA ? Where does the patient want to be cared for/die. Where does the patient want to be cared for/die. Hospital admissions – when would they be appropriate, when not. Hospital admissions – when would they be appropriate, when not.

12. What should be covered (professionals viewpoint) Are there specific disease related issues Are there specific disease related issues -chemotherapy -PEG feeding -ventilation -antibiotics

13. What should be covered (professionals viewpoint) Is it appropriate to discuss CPR Is it appropriate to discuss CPR Are anticipatory drugs needed Are anticipatory drugs needed

14. What should be covered (professionals viewpoint) Who else needs to know Who else needs to know -OOH -Family/carers -health care team (GP/DN/Consultant)

15. Making it happen ‘normalising the process’ What is your organisation doing ? What is your organisation doing ? -sign up from seniors -posters -information : staff and patients -staff awareness and training -systems in place (PPC and others)

16. MDT Review : - SPC MDT - Gold Standards - Other HAS ANYONE STARTED ‘THE CONVERSATION?’ Any more information/decisions since last review? Documented? Where Covered? Any information need sharing, how? Areas to be f/u or addressed? Arrangements for f/u discussions and review Who is best placed to start it? YesNo MAKING IT HAPPEN

17. Timing: possible trigger points Life changing events eg death of a spouse Life changing events eg death of a spouse Following new diagnosis of life limiting condition Following new diagnosis of life limiting condition Assessment of a persons needs Assessment of a persons needs Placing on Gold Standards Register Placing on Gold Standards Register Multiple hospital admissions Multiple hospital admissions Admissions to a care home Admissions to a care home

18. But…Cultural and Psychological Challenges Sensitive to cultural interpretations Sensitive to cultural interpretations Changing views over time Changing views over time Clash of viewpoints Clash of viewpoints The impact of a ‘bad news’ interview The impact of a ‘bad news’ interview A desire to ‘live for the moment’ or ‘take one day at a time’ A desire to ‘live for the moment’ or ‘take one day at a time’

19. Difficulties Prognostication Prognostication Difficult discussions Difficult discussions Making time Making time ‘Death Anxiety’ of staff ‘Death Anxiety’ of staff

20. Communication Skills – being PREPARED P – prepare for the discussion P – prepare for the discussion R – relate to the person R – relate to the person E – elicit pt and carer preferences E – elicit pt and carer preferences P – provide information P – provide information A – acknowledge emotions and concerns A – acknowledge emotions and concerns R – realistic hope R – realistic hope E – encourage questions E – encourage questions D – document D – document

21. Eliciting patients preferences General attitudes to health and care General attitudes to health and care How do they like to be involved in decisions How do they like to be involved in decisions who else do they normally involve in decisions who else do they normally involve in decisions values questions values questions

22. Open questioning Can you tell me about your current illness and how you are feeling? Can you tell me about your current illness and how you are feeling? Who is the most significant person in your life Who is the most significant person in your life Could you tell me what the most important things are to you at the moment Could you tell me what the most important things are to you at the moment What fears or worries if any do you have about the future What fears or worries if any do you have about the future Have you thought about where you would prefer to be cared for as your illness affects you more Have you thought about where you would prefer to be cared for as your illness affects you more