1. End of Life Care in Primary Care 7 th June 2011 Stephen Louw Consultant Geriatrician, Freeman

2. … nightmare scenario for any of us… Frail patient: severely demented; chair bound Living in a nursing home among carers she knows Gets pneumonia/UTI Gets bunged into an ambulance at 11pm to A&E Seen by ‘strangers’; has blood taken; X-rays done; moved from trolley Medical Unit; thence to ward at another hospital. From bed to bed. Given antibiotics & subcut fluids. Nil by mouth for few days. After a few days...reflection: Recognition that the patient is very frail, unlikely to survive ELCP.....dies in unfamiliar surroundings

3. … nightmare scenario for any of us…... a more extreme (recent) case:

4. Mr D 76y Admitted 12/2/2011 21:10 Nursing Home since after Christmas Seen in A&E General deterioration Vomiting x 1 day - ? coffee ground (GP referral) Less responsive for 4 wks

5. Mr D PMH High grade glioblastoma - debulked Aug 2010; Brain-stem stroke at surgery PEG feeding since Sept 10 Long-term catheter. Hoist for transfers; bed-bound; max assistance for all cares. Rx: anti-epileptics

6. Mr D Moved to Acute Medical Unit Unresponsive to pain T36.2; P95; BP 140/80; Sats 93% RA Chest clear; Urine malodorous Unequal pupils; bulging brain ‘Generally stiff’; Flexion contraction L arm & leg

7. Mr D: glioblastoma Urine dip: +ve nitrate; WBC: N; CRP 133. Urea N Diagnosis: UTI Rx: gentamycin; ertapenem

8. Mr D Moved to Short Stay Winter Pressures Ward Remained drowsy. Put on LCP after 2 days. Died after 3 further days.

9. This sort of scenario (Mr D) should not be happening in the UK in 2011. Two compelling documents: GMC directive (2010): Treatment and care towards the end of life NHS directive (May 2011): Capacity, Care planning, and advance care planning in life limiting illness. Several others.

10. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Principles  Equalities and human rights  Presumption in favour of prolonging life  Presumption of capacity  Maximising capacity to make decisions  Overall benefit

11. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Decision-making models Patients who have capacity to decide Adults who lack capacity to decide

12. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making For the purposes of this guidance, patients are ‘approaching the end of life’ if likely to die within the next 12 months. Includes patients whose death is imminent (expected within a few hours or days) and those with: (a) advanced, progressive, incurable conditions (b) general frailty and co-existing conditions that mean they are expected to die within 12 months (c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition (d) life-threatening acute conditions caused by sudden catastrophic events.

13. NHS Guide for Health and Social Care Staff Published 17 May 2011 http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_2011_Final_1.pdf http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_2011_Final_1.pdf Patients must have more choice about their care Cooperation between NHS and Social Services Increase the quality and range of information made available to individuals

14. NHS Guide for Health and Social Care Staff Published 17 May 2011 Builds on DoH’s “End of Life Care Strategy (2008)” Aim “To support the development of protocols to help capture, document and share accurate information on the person’s preferences.”

15. NHS Guide for Health and Social Care Staff Published 17 May 2011 Contents Care Planning Assessment of Capacity Defining ‘Best interests’ The role of Independent Mental Capacity Advocates The Role of the Court of Protection

16. NHS Guide for Health and Social Care Staff Published 17 May 2011 Contents (cont’d) Advance Care Planning Advance Statements Advance Decisions to Refuse Treatments Lasting Powers of Attorney The role of the Office of the Public Guardian

17. NHS Guide for Health and Social Care Staff Published 17 May 2011....some detail Aim “To support the development of protocols to help capture, document and share accurate information on the person’s preferences.”

18. NHS Guide for Health and Social Care Staff Published 17 May 2011...some detail.... Care Planning Assessment of Capacity Defining ‘Best interests’ The role of Independent Mental Capacity Advocates The Role of the Court of Protection

19. NHS Guide for Health and Social Care Staff Published 17 May 2011 Care Planning “embraces the care of people with and without capacity to make their own decisions... It involves a process of assessment and person centred dialogue to establish the person’s needs, preferences and goals of care, and making decisions about how to meet these in the context of available resources. It can be oriented towards meeting immediate needs, as well as predicting future needs and making appropriate arrangements or contingency plans to address these.”

20. NHS Guide for Health and Social Care Staff Published 17 May 2011 What are Care Plans? A document which sets out treatment actions to meet a person’s –Needs –Preferences –Goals of Care Must be agreed with the person receiving care or by those acting in the person’s best interests. (...raises issues of capacity assessment)

21. NHS Guide for Health and Social Care Staff Published 17 May 2011...some more detail.... Care Planning Assessment of Capacity Defining ‘Best interests’ The role of an Independent Mental Capacity Advocate (IMCA) The Role of the Court of Protection

22. NHS Guide for Health and Social Care Staff Published 17 May 2011 Assessment of Capacity Decision specific Eccentric/unwise decisions are acceptable Duty to ensure patient is helped in the process to make their wishes known (timing, support)

23. NHS Guide for Health and Social Care Staff Published 17 May 2011 Assessment of Capacity Two steps: 1.Confirm significant clinical diagnosis of ‘disease of mind or brain’ 2.Perform functional test a.Understand information b.Retain information c.Weigh information d.Communicate their decision.

24. NHS Guide for Health and Social Care Staff Published 17 May 2011...some more detail.... Care Planning Assessment of Capacity Defining ‘Best interests’ The role of an Independent Mental Capacity Advocate (IMCA) The Role of the Court of Protection

25. NHS Guide for Health and Social Care Staff Published 17 May 2011 If patient lacks capacity, decisions should be made on behalf of the individual in their best interests. [MCA specifies the process and criteria for best interests decisions.] Can I avoid doing all this...?...(hassle factor ++)

26. NHS Guide for Health and Social Care Staff Published 17 May 2011 4.3.6 Responsibilities of the decision maker when the person lacks capacity “During the care and treatment delivery process, many different people may be required to make decisions or act on behalf of a person who lacks capacity to make decisions for themselves. The ‘decision-maker’ is usually the person responsible for the person’s care at that time. This can be a relative or partner, but is often a health or social care professional responsible for the individual’s care at the time (Mental Capacity Act 2005, Code of Practice, chapter 5). It is the responsibility of the decision-maker to work out what would be in the best interests of the person who lacks capacity and to record how this assessment was carried out.”

27. NHS Guide for Health and Social Care Staff Published 17 May 2011...some more detail.... Care Planning Assessment of Capacity Defining ‘Best interests’ The role of an Independent Mental Capacity Advocate (IMCA) The Role of the Court of Protection

28. NHS Guide for Health and Social Care Staff Published 17 May 2011....some more detail... Advance Care Planning Advance Statements Advance Decisions to Refuse Treatments Lasting Powers of Attorney The role of the Office of the Public Guardian

29. NHS Guide for Health and Social Care Staff Published 17 May 2011 Advance Care Planning A voluntary process To set on record Choices about care and treatment for the future

30. NHS Guide for Health and Social Care Staff Published 17 May 2011....Advance Care Planning: may record individual’s preferences re: Personal goals or aspirations of care How they feel about –their illness and prognosis –the types of care or treatment available –the types of decisions that may need to be made about their care and treatment in future

31. NHS Guide for Health and Social Care Staff Published 17 May 2011 Advance Care Planning A voluntary process To set on record Choices about care and treatment for the future May include advance decisions to refuse treatment in specific circumstances Mental Capacity Act (MCA 2005) provides for = advance statements to inform decisions = ADRT (legally binding) = appointment of Lasting Power of Attorney

32. NHS Guide for Health and Social Care Staff Published 17 May 2011....some more detail... Advance Care Planning Advance Statements Advance Decisions to Refuse Treatments Lasting Powers of Attorney The role of the Office of the Public Guardian

33. NHS Guide for Health and Social Care Staff Published 17 May 2011 Advance statements (are not binding) A written statement made by the person before losing capacity regarding Issues to be considered in the case of future loss of capacity due to illness e.g.: o the type of treatment they would want or not want o where they would prefer to live o how they wish to be cared for.

34. NHS Guide for Health and Social Care Staff Published 17 May 2011....some more detail... Advance Care Planning Advance Statements Advance Decisions to Refuse Treatments Lasting Powers of Attorney The role of the Office of the Public Guardian

35. NHS Guide for Health and Social Care Staff Published 17 May 2011 Advance Decisions to Refuse Treatments Legally binding (to clinicians) Aim: to refuse specific treatments under specific conditions Made in advance by a pt who has capacity May be verbal But if it includes ‘refusal of life sustaining treatment’ it must be written (and include the statement: ‘even if my life is at risk’). Comes into effect if pt loses capacity

36. NHS Guide for Health and Social Care Staff Published 17 May 2011....some more detail... Advance Care Planning Advance Statements Advance Decisions to Refuse Treatments Lasting Powers of Attorney The role of the Office of the Public Guardian

38. General Care Planning Advance Care Planning (ACP) Advance decisions to refuse treatment Is it legally binding? No – advisory only No – but must be taken into account for ‘best interests’ decisions Yes – provided it is legal and applicable. Takes the place of ‘best interest’ decisions for that specific intervention.

39. NHS Guide for Health and Social Care Staff Published 17 May 2011 By now you should have: Core Competencies Distinguish between ‘care planning’ and ‘advance care planning’ – appreciate overlap Define Advance care planning and possible outcome in terms of MCA Appreciate the need to assess and review pt’s capacity to participate in care planning Know how to assess capacity Appreciate the need to protect and advocate for pt’s best interests if they lack capacity

40. NHS Guide for Health and Social Care Staff Published 17 May 2011 Core Competencies (Chapter 6)...cont’d Discussions should be patient-centred Importance of involving (where appropriate) those close to the patient – recognise the limits of their decision- making powers Key principles of good practice in record keeping Appreciate when you yourself need to ask for advice Importance of giving a realistic account of services and choices available to the patient Importance of having knowledge of risks and benefits of treatments Understand that confidentiality should be respected.

41. Specific clinical challenges in Primary Care for patients at the end of their life....

42. Mrs G 87y old; advanced Alz disease on donepezil in a nursing home For the past 2 months: losing weight Clinically no obvious acute illness; seems clinically dry Unable to assess whether she is depressed or just severely demented Nurses say she is ‘hardly eating anything’ and ‘takes just a few sips of water’

43. Mrs G Should we put down a NGT? Should we send her to hospital ‘for a full screen’? Should we give her subcut fluids for a few days and monitor?

44. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Principles  Equalities and human rights  Presumption in favour of prolonging life  Presumption of capacity  Maximising capacity to make decisions  Overall benefit

45. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making 14. Decision making model if pt has capacity a.Doctor and pt make an assessment of pt’s condition, taking into account medical history, pt’s views, experience and knowledge. b.Doctor uses specialist knowledge and experience and clinical judgement (and pt’s views) to identify which investigations and treatments are appropriate. Explain and discuss with pt. c.Pt weighs the potential benefits, burdens and risks of various options and decides. d.If pt asks for medically inappropriate treatment, the doctor should explain why this is not appropriate.

46. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making 15. If you assess that a patient lacks capacity to make a decision, you must: a.Be clear what decisions about treatment and care have to be made b.Check for ADRT c.Enquire whether someone has legal proxy rights d.Take responsibility for deciding which treatment to give (if no legal proxy exists)

47. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making 16. Decision making model (if pt lacks capacity) a.Doctor, with the pt (if they can contribute) and the pt’s carer, makes an assessment of pt’s condition (medical history, carer’s knowledge) b.Doctor uses specialist judgement and evidence of pt’s views (any sources) to identify which investigations and treatments are clinically appropriate and likely to benefit patient overall c.If pt has advance decision or directive refusing a particular treatment – doctor decides on applicability of ADRT to current situation.

48. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making 40 Weighing the benefits, burdens and risks Benefits that may: prolong life, improve pt’s condition, manage symptoms... must be weighed against the burdens and risks for that patient. These are not always purely clinical considerations. Note: If pt has capacity, they will reach their own views.

49. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Meeting the pt’s nutrition & hydration needs You must keep your patient’s nutrition and hydration status under review You must be satisfied that if necessary the pt is given adequate help to enable them to eat and drink

50. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making If pt refuses food or drink, or has problems eating and drinking Address the underlying physical/psychological causes If, even with support, their needs are not met, consider ‘clinically assisted’ nutrition and hydration

51. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making ‘Clinically assisted nutrition and hydration’ IV, NGT, PEG Evidence of benefits v risks at end of life is not clear (113) Nutrition and hydration by tube or drip are regarded in law as ‘medical treatment’. –Listen to and consider views of pt and carers –Explain that if it is considered of ‘overall benefit’ it will always be offered –If disagreement arises: seek ways to resolve it (47–49)

52. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making GMC’s concept of overall benefit Weighing the benefits, burdens and risks 40: Benefits may: prolong life; improve condition, manage symptoms. Weigh these against: burdens and risks. 41: not just clinical – also ‘circumstances’ 42: pt with capacity should be engaged 43: pt who lacks capacity: discuss with carers, relatives re pt’s wishes, values and preferences.

53. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Adults who lack capacity and are not expected to die within hours or days You must provide clinically assisted N&H if it is considered it would be of overall benefit to them –Consider pt’s beliefs, values –Previous requests for clinically assisted N&H –Other views they have expressed about their care If you consider clinically assisted N&H not to be of overall benefit, get a second opinion; document decision making process.

54. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Do Not Attempt Resuscitation Decisions

55. Mrs C 93y woman with dementia; long term catheter and incont of bowels; help for ADLs; in NH for 4 days after recent discharge from ward. Should she have a DNAR order?

56. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Do Not Attempt Resuscitation Decisions 129 When to consider DNARs “If cardiac or respiratory arrest is an expected part of the dying process and CPR will not be successful...” “It may also help if the patient’s last hours or days are spent in their preferred place of care...”

57. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Do Not Attempt Resuscitation Decisions When to consider making a DNAR decision 130 CPR might be successful, but is not seen to be clinically appropriate because of the likely clinical outcomes... Consider the benefits, burdens and risks of treatment that the patient may need if CPR is successful... If the patient has an existing condition that makes cardiac or respiratory arrest likely...

58. Mrs C 93y woman with dementia; long term catheter and incont of bowels; help for ADLs; in NH for 4 days after recent discharge from ward. Admitted with cough; collapsed lung, AF. Should she have a DNAR order?

59. Mrs C 93y woman with dementia; long term catheter and incont of bowels; help for ADLs; in NH for 4 days after recent discharge from ward. Admitted with cough; collapsed lung, AF. Daughter: ‘mum has been in hospital for the last 7 weeks’ Should she have a DNAR order?

60. GMC Guidance Published 2010 Treatment and care towards the end of life: good practice in decision making Do Not Attempt Resuscitation Decisions 131If a patient is admitted to hospital acutely unwell, or becomes clinically unstable at home or other place of care and they are at foreseeable risk of cardiac or respiratory arrest, a judgement about the likely benefits, burdens and risks of CPR should be made as early as possible.

61. “a judgement about the likely benefits, burdens and risks of CPR” What are the clinical burdens of CPR? –Intubation –Transfer to ITU –Ventilation – pneumothorax, pneumonia –Ionotropes – renal ischaemia, liver ischaemia –Cracked ribs

62. Mrs C 93y woman with dementia; long term catheter and incont of bowels; help for ADLs; in NH for 4 days after recent discharge from ward. Should she have a DNAR order?

63. & GMC’s document Essentially, the NHS and the GMC are asking us to practice as good doctors: Always to Respect the patient’s autonomy promote beneficence avoid maleficence. The NHS and GMC are telling us: If you ignore ethics, we will bind you with rules.

64. Local Initiatives Newcastle Care Homes Project Prof Claud Regnard – Deciding Right – a regional approach t ADRTs for adults in the North East (consultation document)