ADVANCE CARE PLANNING

1. ADVANCE CARE PLANNING • What is advance care planning • Why has it risen on the agenda nationally • Whats the evidence • Experience from other countries • UK experience • What would be good practice here • Case studies • How can we make it happen?

2. Advance Care Planning • a process of discussion between an individual and their care providers • 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

3. Advance Care Planning embraces a range of • written recorded oral expressions of future preferences for care and treatment • general reflection of a person’s hopes, general beliefs/values and wishes for care

4. Advanced Care Planning discussions might include: • individual’s concerns • values or personal goals for care • understanding about illness prognosis • preferences for care or treatments in the future

5. Why ACP is on the Agenda • We die old, sick and after a substantial period of disability • Capacity issues will increase as dementia incidence increases • Increasing medical and technological advances make intervention and sometimes prolongation of life possible • Ethics of health care resources

6. National perspective • Choice Agenda • End of life strategy • Nice SPC 2004 • Darzi • Mental Capacity Act

7. National perspective - Choice • ‘Building on the Best, Choice, Responsiveness and Equity’ 2003 all adult patients nearing the end of life will have access to high quality palliative care and live and die in the place of their choice

8. ‘CHOICE’ • Choice and health - exploring the pros and cons of the government choice agenda : people are unaware of the choices available, and feel ill-equipped to make choices. (Which 2005)

9. National End of Life Care StrategySummer 2008 • Will emphasise • care in the community • choice esp. in place of dying • Use of pathways and tools: • Gold Standards Framework (primary care and care homes) • Liverpool Care Pathway (all settings) • Preferred Priorities of Care • End of life care in care homes • Measurement of quality and outcomes

10. ‘End of Life Care Programme’ DOH 2004 ‘Improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice’

11. “The most important objective is to ensure that people’s individual needs, their priorities, their preferences for end of life care are identified, they are documented, they are reviewed, they are respected and acted upon wherever possible. Now that message has to go out everywhere within the NHS and I think that’s the important starting point for everything else…” Alan Johnson, Secretary of State for Health, speaking on Radio 4’sToday programme at the launch of the End of Life Care strategy, in July 2008

12. Darzi • Lord Darzi’s NHS Next Stage Review focusing on end of life care • Advanced care planning needs to be undertaken for all individuals with incurable progressive diseases, • with the aim of seeing a significant shift in achieving patients preferred place of dying.

13. NICE Teams should ensure: • patients’ and carers’ involvement in decision making about care This should include • eliciting patients’ own knowledge about condition, treatment, care • Establishing how much and which decisions they would like a say in • Preferences should be assessed on an ongoing basis. • Recording and sharing this information

14. Advanced care planning and the mental capacity act

15. 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

16. Mental Capacity Act STATUTORY CHECKLIST FOR BEST INTERESTS • 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 P 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 P as someone to be consulted – Anyone engaged in caring for P or interested in his welfare

17. Preferred place of dying • Most studies have found that around 75% of adults want to die at home • A range of studies have found that between 50 -70% of those receiving care with a serious illness also say they would prefer home care at the end of life

18. Place of Death ONS = Office of national statistics England Bradford district = Bradford and Airedale SPC = patients who died with specialist palliative care team involvement

19. 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.

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

21. Research Evidence • Associated with death in place of choice and use of palliative care1-3 • May increase a sense of control 4 • May increase congruence between preferences and treatments 5,6 • 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 • 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 • 5. Hammes b, Rooney B.Archives of Internal Medicine 1998 ; 158:383-390 • 6. Molloy DW et al JAMA 2000 :283(102): 1437-1444

22. Research Evidence • Most of the general public is supportive of ACP • Most health and social care professionals have a positive attitude towards it • Doctors have the most reservations

23. Research Evidence • Narrow interventions focusing on AD completion not as successful as complex,multiple interventions • JAMA. 2008;300(14):1665-1673 End-of-life discussions are associated with less aggressive medical care near death . Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

24. Goals of ACP • Ensuring that clinical and other care is in keeping with patients preferences when the patient has become incapable of decision making • Improving the process for shared health care decision making • Reducing the frequency of under or over treatment

25. What could be included Patients – prefer outcome orientated statements rather than directives about specific treatments in specific circumstances Professionals – may find these difficult to interpret.

26. What could be included • Preferences eg – who to talk to/ who not to talk to - whether you want / have a ADRT - Whether you want / have an LPA - views on life sustaining treatment eg CPR,ventilation,artificial feeding - where you want to be cared for or die

27. 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?”

28. Advance Care Planning - risks • Don’t forget it’s the patients choice • People are NOT required to make advance care plans, or ADRT, or LPAs • Risks: – asking at inappropriate times or in an inappropriate way – forcing people to have discussions they do not want to have – increasing rather than reducing distress – painting by numbers: whose canvas is it? – quality of care will be judged by numbers of advance care plans. They are a tool not an outcome

29. 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

30. Professionals approach to ACP discussion • Prepare for discussion –Understand the patient and family –Understand the patient’s condition and prognosis • 2. Determine what the patient and family know – re: condition, prognosis • 3. Explore goals, hopes and expectations

31. 4. Suggest realistic goals • 5. Respond empathetically • 6. Complete and sign PPC/DNAR/OOH • 8. Review and revise periodically

32. Patient responses to ACP • Has not and does not want to discuss • Wants to discuss some but not all aspects • Would like to make a verbal statement about their wishes • Would like to document their wishes

33. Medical Orders for Life-SustainingTreatment • Created by the Community-wide End-of-Life/Palliative Care Initiative in 2003 • Adapted from Oregon’s POLST • Combines DNR, DNI, and otherLifeSustaining Treatments • Incorporates NYS law

34. POLST • POLST in Long-Term Care Settings • No one received unwanted CPR, ICU care, or ventilator support (Tolle et al., 1998) • Treatment matched POLST instructions regarding CPR (91%) antibiotics (86%), IV fluids (84%), feeding tubes (94%), and medical interventions (46%) • 20% received more invasive medical interventions (Lee et al., 2000)

35. POLST • POLST in Long-Term Care Settings • POLST accurately conveys treatment preferences 90% of time (Meyers et al., 2004) • Resuscitation status does not indicate preferences (Hickman et al., 2004) • 77% with DNR had order for more than the lowest level of treatment in at least one other category. • 47% with full code had orders for less than the highest level of treatment in at least one other category

36. POLST • POLST and EMS • POLST changed treatment in 45% of cases • 91% agreed POLST is useful in determining what to do when patient pulseless, apneic (Schmidt et al., 2004) • University of Washington, Vancouver grad student looking at use in emergency department and when deviate from POLST

37. United Kingdom Experience • Preferred priorities of Care • Expressions of health care preferences • Peer Mentoring • RCP guidance

38. My Experience • Most patients value the discussions • Most patients have wanted me 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

39. Making it happen • Identifying patients in a timely fashion • Having knowledge of how an illness may affect a person in the long term • Who is best placed to have these discussions

42. How can we facilitate patient discussion and choice • Presenting scenarios • Health care preferences questionnaire • Discussing patients views of how peers have been cared for • Longer term raising public awareness and encouraging them to discuss with family members

43. Where and when should they happen • Where should they be recorded • How should they be communicated to others • Need for cross organisation work with senior support

44. Having a system that works require • Staff training and confidence • Recognisable documentation • Systems for identifying patients to have discussions with • Ways of updating discussions • Ways of tagging whether a person has an advance care plan and where it is kept • Commitment across services to contribute

46. Available Guidance - Professional • Advance Care Planning – a guide to Health and social care staff • RCP Concise Guidance to good practice (a series of evidence based guidelines for clinical management) Advance Care Planning – National Guidance (number 12) • ADRT.nhs

47. The Mental Capacity Act in Practice: Guidance for End of Life Care – National Hospice Council • Planning for your future care – a guide NHS EOL program April 09