Proactive anticipatory care planning

1. Dr David Secchi Speciality Registrar Proactive anticipatory care planning

2. Overview A case Guidance on end of life care Death statistics Advance care planning Care planning PEACE PACe

3. GMC 2010 “Patients who are approaching the end of their life need high-quality treatment and care that support them to live as well as possible until they die, and to die with dignity”

4. Mrs M.J 92year old lady HPC Admitted from NH, referred by G.P to R.S.C.H Concern about fall out of bed 2/7 ago, Increasingly S.O.B and drowsy since Background of dementia, dependency and decreased oral intake with some difficulty swallowing PMH Dementia CCF CKD 3B AF Anaemia Bilateral knee replacements Macular degeneration

5. Examination and Investigation Thin. Dehydrated. Cool to touch. Drowsy. Crepitations RLZ. Sats 91% air Loaded on DRE. Catheterised in A&E -426 mls RV Cannulated after 4th attempt in foot Bloods – Na + 164/urea 26/creat 189 Hb 8.4/WCC 10/CRP28 ECG AF 118 -known CXR –Old rib fractures, possible RLZ changes C.T brain – Involution/Moderate SVD

6. Collateral history Daughter : “ In progressive decline for year at least & much worse in past 3 weeks. Pleasantly confused with limited communication. Always happy and smiling. Loves to look pictures of the family. Walks on a rare good day with an arm or frame” No previous discussion about her thoughts of future illness with her family or health professional- other than a D.N.A.R form, completed 2/12 previous at RSCH (her third admission of the last 6/12) Agreement to give fluid replacement, oxygen, abx, treat constipation and remove catheter when possible……..

7. Progress A&E to E.A.U Recannulated in arm Increasingly drowsy/low BP & Saturations IVabx for chest infection/aspiration Digoxin loading for AF Moved to side room on an orthopaedic ward 2 attempts at N.G tube over the weekend-neither tolerated After 72 hers The Amber care bundle initiated After 6 days of admission a best interests meeting held Decision to move back to N.H with plan for comfort peace and dignity

8. Did Mrs M.J receive best care? Could we have anticipated her trajectory earlier? Could this phase of her life have been better planned for in advance? Was admission to hospital the right thing for her? Could you say that hospital resources were well deployed? How can we help people think about planning for times when they do not have capacity to convey their wishes? How do we convey the best interests decisions made during her admission to her carers in the community?

9. The drive to improve end of life care The Mental Capacity Act 2005 The National council for palliative care The National end of life care group The Royal college of Physicians Guidelines The General medical council Guidelines The gold standards framework NICE QS13

10. G.M.C Guidelines 2010 A person is considered to be approaching the end of life when they are likely to die in the next twelve months. This includes those imminently dying. This may be one of the following circumstances; Advanced/progressive and incurable conditions. General frailty with co existing conditions Existing conditions that are at risk of a sudden acute crisis Life threatening acute conditions that are caused by sudden catastrophic events.

11. Prognostic Indicator Guide: October 2011 Three triggers that suggest that patients are nearing the end of life are: • The Surprise Question: ‘Would you be surprised if this patient were to die in the next few months, weeks, days’? • General indicators of decline - deterioration, increasing need or choice for no further active care. • Specific clinical indicators related to certain conditions.

12. N.I.C.E: Quality standard for end of life care for adults (modified October 2013) The care that people approaching the end of life receive is aligned to their needs and preferences. Increased length of time spent in preferred place of care during the last year of life. Reduction in unscheduled care hospital admissions leading to death in hospital (where death in hospital is against their stated preference). Reduction in deaths in inappropriate places such as on a trolley in hospital or in transit in an ambulance.

13. Our concerns about dying The fear of the unknown Being in pain, Sob, Nauseous, thirsty….. Leaving their families behind Being alone Not knowing what the prognosis is Not knowing what care is available Being kept alive at all costs Being a burden to their family PRISMA Survey 2013

14. Population statistics 500,000 people die each year In UK 58% in hospital (74% would choose home) Increasing numbers of deaths in people aged over 85. 50% of females live to over 85 (30% men) 90% of patients will have hospital care in the last year of life with an average of 3.5 admissions There are 8 million people over 65

15. Attitudes to death National centre social research: British social attitudes survey 2012 70% Comfortable talking about death 5% say they have set out how they would want to be cared for 67% would prefer to die at home 11% have arranged their funeral 35% made a will 28% wish to donate organs

16. Advanced care planning Royal college of physicians guidelines 2009 “A process of formal decision making that aims to help patients establish decisions about future care that take effect when they lose capacity”

17. Discussing end of life care When exactly? Who and where? Ideally the patients usual doctor By a consultant in the outpatient setting By hospital team during inpatient admission? By palliative care specialist team When patient chooses… When diagnosed with a life limiting illness Where disease trajectory predictable When significant decline is recognised At an age threshold? On moving to care?

18. Formalised outcomes of advance care planning (from the MCA 2005) 1). Advance statement: A persons written or verbal thoughts, wishes, values, priorities that may help inform best interests decisions should the patient lose capacity to make a particular decision. 2) Advanced decision to refuse treatment (ADRT) A specific refusal of treatment in a pre defined potential future situation. If referring to life sustaining treatment must be signed witnessed and state 'even if life at risk’. Legally binding if valid and applicable 3) The appointment of a lasting power of attorney (L.P.A)

19. Advance Statement

20. Benefits of ACP Promotes patient autonomy Assists decision making in complex areas of patient care Relieves family anxiety Evidence of decreased days of hospital admission in last year of life (18 days v's 26) Resources and justice: less likely to experience unpleasant medical intervention. More likely to have clinicians focused on symptomatic care Evidence for increased likelihood of hospice admission and dying in your preferred place

21. Barriers to ACP Clinicians confidence and expertise in discussing these topics Time available to do so (Estimates of three meetings , taking an hour overall to complete an advance care plan) Patients willingness to discuss their future and the vast number of individualised aspects to this reluctance The difficulty in predicting how you might feel in the future about things you haven‘t experienced

22. The R.C.P March 2012: Improving end of life care “Data from complaints and audits would suggest that either the self-reported confidence of physicians is sometimes misplaced, or that physicians are not putting their skills into practice. The earlier identification of patients entering their last phase of life and planning with them for their preferences for care is an area that is particularly lacking. Patients and their carers have an important role in helping staff to consider their practice more carefully.’

23. What about patients that do not have capacity to make decisions for their care? The mental capacity act describes best interests decisions for those that do not have capacity to make the particular decision at the particular time Any decisions made in a patients best interests about their future care, that may include end of life care is not called advance care planning and the conclusion cannot be said to be any of the potential formats as described by the M.C.A The end of life care strategy group call this Care planning to distinguish it from advance care planning

24. Care planning If a person lacks capacity to decide, care planning should involve their relatives, partner, close companions and any other care staff who know them or are responsible for their care Care planning must focus on determining their best interests using the process required by the mental capacity act If the patient who lacks capacity has no close friends or family and has not recorded any choices about their care or treatment, an IMCA should be instructed and consulted regarding these decisions

25. 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 • Making decisions about how to meet these in the context of available resources • Meeting immediate needs and predicting future needs • Making appropriate arrangements or contingency plans to address these

27. Back to the case Mrs M.J had not participated in advance care planning before she lost capacity She had not made an advance statement or A.D.R.T. and had not made a L.P.A Best interests decisions were made during her stay by her clinicians and family for her immediate care The best interests decisions regarding the return to her NH for symptomatic care, comfort, peace and dignity will need to be conveyed to the community…. What form should the documentation take and where should it be kept?

28. Capacity, care planning and advance care planning in life limiting illness “There should be locally agreed policies about where care planning documentation (including any formalised outcomes of advance care planning) is kept and systems in place to enable sharing between the health and social care professionals involved in the care of an individual, including out of hours providers and ambulance services”

29. The PEACE Pilot: Kings and St Thomas’s Proactive Elderly Advance Care Planning Introduced the PEACE document. This was completed for patients discharged to nursing homes. For certain anticipated outcomes e.g. the patient develops an aspiration pneumonia, a practical care plan was given and where this plan could best be followed e.g. home or hospital Result: None of the patients with PEACE documents were Readmitted. A proportion of patients without PEACE were.

30. Proactive anticipatory care planning Guildford and Waverley are calling this process: Proactive anticipatory care planning The PACe document will convey Mrs M.J's best interest decisions to all that care for her in the community If her health declines in ways as anticipated in the document an advisory care plan outlines how her care may be approached

31. PACe document Personal information : Details of those involved in the patient’s care Diagnosis , capacity assessment, and resuscitation status Action categories : Intensive: Transfer to hospital for treatment if appropriate. Intubation, ventilation etc. should  be considered Hospital: Transfer to hospital for treatment if appropriate Home: Treatment, medication and comfort measures with support from GP Comfort: Palliative Medication by subcutaneous, oral or per rectal route, positioning, wound care and other measures to relieve suffering

32. Assessment The patients G.P or hospital consultant completes this section with An action category and any comment appropriate Example:

33. Conclusions We should endeavour to identify appropriate circumstances to introduce and facilitate Advance care planning For patients that lack capacity- CARE planning is the equivalent terminology. This planning can be recorded in the PACe document PACe is being introduced to this trust

34. “ You matter because you are you, and you matter to the end of your life. We will do all we can not only to make sure you die peacefully, but also to live until you die” Dame Cicely Saunders