1. End of Life Mental Capacity 26 September 2012 Trinity Park

2. TIME AGENDA 7:30 pm Welcome & Feedback on East Suffolk EOL Pilot & expansion of pilot to Ipswich practices Dr Paul Driscoll Pilot Initiator (Haven Health) & Dr Pete Holloway Clinical Executive Member (EOL & Cancer QIPP) 2:45 pm End of Life Care and Dementia Dr Robert Butler Consultant Psychiatrist – Norfolk & Suffolk Foundation Trust Session is to include dementia, how it progresses, planning EoL care for dementia, statements about future needs, managing later symptoms, medical emergencies, withholding treatment, place of death 8:15 pm Legal Aspects of End of Life Care Emma Farrar –Solicitor – Neil Cawthorne & Associates Session to include the definition or test or test for capacity and it being time context and issue specific, how to support a person to make a decision, who can legally make a decision if the person lacks capacity and the use of IMCA's. Emma will also cover deputyship, attorneys and the powers they can have advance directives/living wills 9:00 pm How to Complete a Yellow Folder and important changes to forms Suffolk Advance Care Planning Team 9:20 pm Questions for speakers 9.30pm Event close

3. Feedback on East Suffolk EOL Pilot & expansion of pilot to Ipswich practices Dr Paul Driscoll Pilot Initiator (Haven Health) & Dr Pete Holloway Clinical Executive Member (EOL & Cancer QIPP)

4. What did we do? Identified patients within East Suffolk residential and nursing homes for whom EOL planning was appropriate Worked with homes to get Yellow Folders in place & advised Harmoni and EEAST Completed EOL training for 50 of 75 homes in East Suffolk area to raise awareness Between July 2011 & end of August 2012, 807 plans have been put in place across East Suffolk

6. Three monthly MA deaths at home /care homes

7. Training for care & nursing homes Interactive 2½ hr session Presentations from a GP, Ambulance and Suffolk Advance Care Planning Team Designed to raise awareness and opportunity to ask questions on any aspect of EOL care Full training Yellow Folders (Contents and completion) The following slides form part of the training given

8. Improving end of life care for patients in residential care AIM To keep the dying elderly out of hospital. However, these are an increasing numbers in admissions:  out of hours (115.5 hrs)  in hours 8 – 6.30 5/7 (52.5 hrs) PLAN To consider the reasons for this Discuss a simple project to address it This is NOT comprehensive end of life training

9. Facts from demos report 2010 500,000 people die each year (590,000 by 2030) PLACE OF DEATH 60% Hospital (65% by 2030) 17% Care home 18% at Home (31% in 1974) 5% Hospice BUT 66% want to die at home 7% want to die in hospital 1/5 NHS spending on End of Life Care amounts to £20 billion (Local data, 2010)

10. Causes of death  ¾ “Predictable”  Cardiovascular diseases 31.6%  Cancer 22.4%  Respiratory 13.9%  Dementia 25% CARE HOMES 18,000 – 420,000 Residents 72, 500 deaths (2006)

11. Do people want to talk about dying? 78% - part of a health professional’s job is to talk about - how and where they would like to be cared for when dying 14% - when healthy 52% - when diagnosed with life limiting condition 12% - when individual is ill and is dying

12. What matters to people of end of life?  36% access to family / friends  20% good personal care  22% accessible pain relief  12% access to good medical services

13. Why do our patients end up in hospitals?  Physical illness symptom control  Family pressure  Advice from out of hours / ambulance  Concern re deaths in Care Home (CQC)

14. What is wrong with patients dying in hospitals?  Does not reflect patients wishes  Not right environment (Quiet; own bed/room; visiting; relationship with staff)  Lack of continuity of care  Loss to care home staff  Expense

15. What are hospitals good for? Acute Trauma/ Emergencies Surgery Complex Investigations What are hospitals not so good for? Frail elderly Dementia Visiting and relatives Cost

16. Who is responsible for these admissions?  GP  Hospital / A&E  Out of Hours  Social Services  Carers / Home staff / Family  All of these above / None

17. What can we do about it?  Talk to family / patients & identify wishes  Identify “end of life” transitions and move towards palliative care  Liaise, liaise, liaise  Practicalities - OOH form; Ambulance DNAR/AND form  Increase support in the Community

18. Drugs available to  INJECTABLES SICKNESS Cyclizine 50mg Levomepromazine Prochlorperazine Metoclopramide  PAIN Diclofenac Tramadol Diamorphine EMERGENCY SUPPLY OF OXYGEN OOH doctors  AGITATION Midazolam Diazepam Haloperidol  SECRETIONS Hyoscine

19. How to address DNR status in care homes - tips for success 1. Best at routine visit - planned / prewarned 2. Encourage care home staff to do (e.g. on arrival to home as part of induction paperwork) 3. Use words/terms such as: “Thinking ahead” “I wondered if you have given any thought to” “Let me ask you something difficult” 4. Allow time to consider and discuss with relatives, but have a system to chase up afterwards 5. Using leaflets can be very helpful 6. 90% + very easy. If difficult, it can be VERY difficult; capacity/ family disharmony/unreal expectations, discuss /wait /don’t do

20. ‘No decision about me, without me’ GMC guidance Treatment and care towards the End of Life: Good practice in Decision Making states: 134.“If a patient is at a foreseeable risk of cardiac or respiratory arrest and you judge that CPR should not be attempted, because it will not be successful in restarting the patient’s heart and breathing and restoring circulation, you must carefully consider whether it is necessary or appropriate to tell the patient that a DNACPR decision has been made. You should not make assumptions about a patient’s wishes, but should explore in a sensitive way how willing they might be to know about a DNACPR decision. While some patients may want to be told, others may find discussion about interventions that would not be clinically appropriate, burdensome and of little or no value. You should not withhold information simply because conveying it is difficult or uncomfortable for you or the healthcare team”

21. Mental Capacity Act The Mental Capacity Act 2005 outlines 5 core principles: 1.A person must be assumed to have capacity unless it is established that he lacks capacity. 2.A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. 3.A person is not to be treated as unable to make a decision merely because he makes what seems to be an unwise decision. 4.An act done or decision made under this Act for or on behalf of a person who lacks capacity must be done or made in his best interests. 5.Before the act is done or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is least restrictive of the person’s rights and freedom of action.

22. Capacity Capacity, or competence, is the ability to make a decision The Act introduced a formalised test to assess this Healthcare professionals often only question lack of capacity if a patient refuses proposed investigations/treatments The test for capacity has two parts 1.To determine if a patient has ‘an impairment of, or disturbance in, the functioning of the mind or brain’ 2.The patient can demonstrate his ability to perform four taskjs related to his decision: - Understand the information related to it - Retain the information related to it - Use and weigh the information - Communicate his decision

23. Basic principles of advanced decisions Advance decisions can only be made by adults over 18 years of age with decision making capacity. They can only refuse treatment They cannot include illegal requests such as euthanasia They cannot be used to refuse basic care such as warmth, maintenance of hygiene and offer of food by mouth They have the same legal force as contemporaneous refusal if valid and applicable They only come into force once a person loses capacity to accept or refuse the treatment in question No specific form is required unless refusing life sustaining treatment (can be oral or written) They can be written in lay terms There is no requirement for them to be registered anywhere

24. End of Life Care and Dementia Dr Rob Butler Consultant Psychiatrist, Norfolk & Suffolk Foundation Trust

25. Dementia How it progresses Planning EoL care for dementia Statements about future needs Managing later symptoms Medical emergencies Withholding treatment Place of death Covering

26. Resources NICE Dementia Guideline DH End of Life Care Strategy Gold Standards Framework Liverpool Care Pathway Alzheimer’s Society Factsheets: The later stages of dementia and Palliative care NICE: End of life care for people with dementia commissioning guide SCIE: Dementia gateway end of life care

27. Context In Suffolk, 10,000 people with dementia in 2008, increasing to 16,000 in 2025 Occupy up to 25% of acute beds A typical GP list size of 10,000 people 16% or 1600 will be aged 65 or older Of whom 5% or 80 will have dementia Number of people with dementia who require EoL Care each year is around 13 90% of deaths of pwd are over 80 yrs old

28. EoL care and dementia Palliative care generally developed around people with cancer – controlling pain, facing the illness, making choices Dementia different – often lost communication and capacity, terminal stage may last for several years Under resourced and under-researched

29. Copyright ©2009 BMJ Publishing Group Ltd. Burns, A. et al. BMJ 2009;338:b158 Symptom progression in Alzheimer's disease

30. Possible indicators for GSF with dementia ADLs – unable to put on clothes, wash or walk without assistance Communication – few words Eating – requiring assistance or swallowing difficulties, soft diet Incontinence – urinary and faecal Infections – recurrent febrile episodes or aspiration pneumonia

31. Advance Care Planning The process of discussion between an individual and their care providers may include: An Advance Statement An Advance Decision to Refuse Treatment A Do Not Attempt Cardiopulmonary Resuscitation Lasting Power of Attorney

32. Managing later symptoms Comfortable environment, optimise senses Pain – may be unable to communicate Memory loss – family, music, scent, touch Communication – non-verbal clues Mobility – alert to pressure sores Wt loss – swallowing, nutritional advice, special diet Incontinence – adviser Sun downing – extra input Agitation – medication 3 rd line only, donepezil, memantine, mirtazapine, SSRI, lorazepam, risperidone

33. Marie Curie Haringey Project People with dementia within six months of death, reasons for admission to acute hospital Not eating or drinking Constipation, lower abdominal pain, no mobility Shortness of breath, cough, drowsiness Acute on chronic confusion Poor oral intake, chesty, shaky Pale, unresponsive, chesty cough, found unconscious Shortness of breath, confusion Shortness of breath Fall/head injury Right leg swollen Vaginal bleeding and reduced appetite

34. Medical emergencies Delirium and/or aggression Prevention Find the cause: discomfort, infection, metabolic, medication, Optimise environment, reassurance Hydration, consider antibiotics, pain relief Risperidone/haloperidol 0.5mg – 5mg

35. Withholding treatment Quality of life rather than quantity Goals are comfort and emotional wellbeing Involve family and carers Alzheimer’s Society believes it is inappropriate for a person with advanced dementia to be given artificial hydration and nutrition for the sole purpose of prolonging life Sips of water, one-to one nursing Spiritual needs Terminal sedation: midazolam and haloperidol

36. Place of death with the underlying cause of dementia, England, ONS, Department of Health, Mortality file, 2008 ______________________________________________ _______________

37. Mental Capacity, Treatment and Care Emma Farrar, Solicitor Neil Cawthorne & Associates

38. What is mental capacity? Whether a person can make a decision.... The ability to decide something... What does a person need to be able to make a decision? They need to:- Understand the information Retain or hold the information for long enough Weigh the information up Communicate the decision (in any way)

39. Why is it important? The Mental Capacity Act was enacted to bring together a number of laws and common practice The aim of it is to protect the rights of the individuals and to empower them to make choices where they are able to but also to ensure there is a legal framework and process around people who can't make some decisions for themselves. There is no longer the generalisation that a person doesn't have mental capacity - a person may have capacity for some things but not others. It is issue or question specific. There is a huge difference between the capacity needed to decide if you want tea or coffee and deciding where to live, whether to have an operation or what to do with your life savings.

40. What does the Mental Capacity Act say? Five core principles:- 1.A person is assumed to have capacity unless it is proved otherwise. 2.A person is not to be treated as unable to make a decision unless all practical steps have been taken to support them to make a decision without success 3.A person is not to be treated as not having capacity because they make an unwise decision 4.An act done or decision made for, or on behalf of, a person who lacks capacity must be done in their best interests (best interests decisions). 5.Before the act is done or the decision made, regard must be had to whether the outcome can be achieved in any other way that is less restrictive of the person’s freedoms.

41. So you must always assume a person has capacity unless you have reason to doubt they may not have. BUT.... You can't assume a person doesn't have capacity just because of their age, appearance, condition or behaviour!

42. How do we put it into practice? There is a two stage test for assessing a person’s capacity:- 1.Does the person have an impairment of, or disturbance in, the functioning of the mind or brain? If so... 2. Is that impairment or disturbance sufficient to cause the person to be unable to make that particular decision at the relevant time? When asking these questions you must consider whether the person is able to understand the information, retain it for long enough to weigh it up and then communicate the decision. You MUST show you have used this test and evidence it. If a person doesn’t have capacity, a person applying to become their deputy, may ask you to complete a COP3 form. The test for capacity is set out on the form.

43. Other factors to consider when assessing a persons capacity:- IQ - a person’s intellectual ability Memory Attention and concentration span Reasoning ability Ability to process information Comprehension and communication Culture Social environment But don't make a decision based purely on these factors, they are just factors which may affect their ability to make a decision 43

44. The Code of Practice that came out with the act sheds more light on assessing capacity. It says... Does the person have a general understanding of the decision and why they need to make it? Does the person understand the consequences of making the decision or not making it? Are they able to understand the information relevant to the decision? Can they weigh up the information and its importance? People might need information to be communicated to them in a way that they can understand it. 44

45. The Code Guidance cont... Be aware of people's cultural, religious and social influences. Make the person at ease and choose the right environment to enable them to make the decision. Don't necessarily accept the first answer/lack of an answer. It might take a few attempts, so don't rush.... Check back your/their understanding of the question and decision. 45

46. If a person has got capacity they can make decisions in advance. Advance Decisions or Directives and Living Wills They are legally enforceable if - the person was over 18 at the time of making it. - the person had capacity to make the decision at the time he made it. - the wording in the document is applicable to the medical circumstances. - the wording must be clear and unambiguous. - the document was not drawn up under the influence of another. - the person intended for the document to be used in these circumstances. - the person was fully informed of the consequences including that it may hasten death.

47. Verbal or in writing? It can be made verbally but it is best to be put into writing to ensure the meaning is clear and there is a written record. If it is in writing it should include:- - The person’s full name, address and date of birth. - The person’s GP (and ideally a copy would be held by the GP). - Whether advice was sought from any healthcare professionals. - The date and signature of the person witnessed by at least one person over 18 and unrelated to the maker and who does not benefit under the person’s will. - A clear statement of the person’s wishes and values including treatment they don’t want and when the document should come into effect. - Name and contact details for anyone they wish to be consulted about treatment decisions. - The date they wish to review their decision, if relevant. - If it relates to life sustaining treatment, that the person understands their life may be put at risk. - A statement confirming there was no undue influence or pressure from others.

48. Can it be overridden? A validly signed LPA for welfare signed after the advance decision can override it, especially if it gives the attorneys the right to consent or refuse life-sustaining treatment. An Advance Decision may not be followed if it is unclear what treatment or in what circumstances the person wanted it to take effect. What about Living Wills? Living Wills, if made before 2007, must comply with the Mental Capacity Act 2005, requirements (as listed previously) to be valid.

49. An Advance Decision Document cannot:- - override a decision made by a person who has got capacity. - refuse basic nursing care to keep the person comfortable. - refuse food or drink by mouth. - demand treatment which medical professionals feel is inappropriate. - refuse treatment for a mental disorder if the person is, or is liable, to be detained under the Mental Health Act. - ask for anything against the law, such as euthanasia. Because it is important to get this document right for it to take effect when the person wants, it should normally be drawn up by a solicitor.

50. People who have legal authority If a person lacks capacity to make a decision there are some people who have legal authority to make a decision on their behalf. LPA Attorneys – for welfare or finance EPA Attorneys – for finance only Deputies – for finance and occasionally welfare (appointed by the Court of Protection once a person has lost capacity) LPA Attorneys must have registered the document for it to be valid. This can take many weeks. Deputy orders can take months to get and welfare orders are rare. The court can make one-off orders and urgent applications can be made.

51. Best Interests Decisions... If a person does not have mental capacity to make a certain decision, any decision made on their behalf by anyone must always be made in their best interests. A person only has legal authority to make a decision on behalf of a person if they are an Attorney or a Court- appointed Deputy or if they have been given specific permission to do so by the Court of Protection However, informal decisions are made all the time by those surrounding a person without capacity. BUT they must always be made in the person’s best interests.

52. A Best Interests Decision must take into account certain factors, such as:- All the relevant circumstances. Whether the decision can be put off until the person has regained capacity (if that is a possibility). Whether the person can participate in the decision making process in some other way - can they be involved? The person’s wishes, feelings, beliefs and values (especially if they were written down before they lost capacity). The view of others, such as family, friends, informal carers or anyone appointed to act on behalf of that person. Is there a less restrictive approach or an alternative? Is there any conflicting evidence? Always provide clear and objective reasons for the decision and why you believe it is in a person’s best interests.

53. Who would or could make a best interest decision? Normally it is a care manager, or a social worker But it could be anyone. IMCA’s If a person lacks capacity and is un-befriended (no appropriate family or friends) an IMCA should be appointed to consider options around medical treatment.

54. Documents that don’t give legal authority Suffolk has adopted the Gold Standard Framework. The Advance Care Planning Team have been doing lots of training and work with professionals around the county on the documents. The documents are not legally binding, BUT they do allow you to start the conversation with the person and their family or paid carers. The Advance Care Planning Team will be talking to you about the individual documents.

55. Which documents to use? It really depends on a number of things, for example:- Whether the person has got mental capacity or not Where the person is in terms of their health How the person feels about the different treatment options If the person has strong feelings or beliefs and if they want to do all they can to ensure that they are acted upon (to be legally enforceable an Advance Decision is needed) Whether the person has family or friends they can rely on to make difficult decisions (maybe consider a welfare LPA) Whichever documents are used, they need to be done in consultation with the person’s GP, and when the person has an understanding of their condition or illness

56. How to use a Yellow Folder Alicia Smith & Jo Jones ACP Facilitators Suffolk Advance Care Planning Project

57. Who should lead the discussions? Care Homes District Nurses Community Matrons Community CNS Teams (Macmillan Nurses) AHPs GPs

58. Yellow Folder Process Charts Flowcharts developed for Primary Care, Community teams, Care Homes and Hospices reflecting the individual role within the Yellow Folder process. New changes within Yellow Folder: Adapted GSF Passport Addition of a Key Contact Directory Adapted DNACPR tri-carbon form Notification of DNACPR to Ambulance Service (EEAS)

59. Adapted GSF Passport Requires a GP’s signature, agreeing to complete a death certificate for an expected death with no reportable circumstances outside of the 14 day rule to reduce unnecessary coroner reporting

60. Contact Sheet New additional sheet Directory of Key Contacts to help co-ordinate services at end of life Useful for families/carers to help prioritise which service to call in an emergency Gives other healthcare professionals, families and carers an overview of who is involved in an individuals care at end of life

61. New DNACPR Changes made by SHA as a result of feedback from road shows Tri-carbonated form with copies for the patient, clinical notes & audit SHA to send letters to all stakeholders via the Anglia Cancer Network (ACN) ACN to distribute pads of forms There is an expectation for organisations to purchase additional forms Existing DNACPR forms are still valid – current decisions do not need to be transferred onto new form Ensure that a Doctor has signed the ‘endorsement by responsible senior clinician’ section on the DNACPR form