1. NHSScotland Event 2015 LEADING INTEGRATION FOR QUALITY B:3 Finding Out What Matters When Time Becomes Short

2. What can be done to identify people who may be in their last year of life in primary or secondary care? 1 = Clinical Judgement 2 = SPICT 3 = Patient and Family Request 4 =Palliative Performance Scale 5 =Surprise Question

3. Talking about ‘What Matters’

4. “Whatever the setting, care will be provided to the highest standards of quality and safety, with the person at the centre of all decisions.” 2020 Vision Dr Kirsty Boyd Consultant in Palliative Medicine, NHS Lothian Honorary Clinical Senior Lecturer The University of Edinburgh Dr Belinda Hacking Head of Psychology Service for LD, Health, Forensic, Neuropsychology and Older Adults NHS Lothian Talking about ‘What Matters’

5. Deteriorating Health Deteriorating & ‘dying well’ Time Best Supportive Care & Palliative Care Living with progressive multimorbidity Functional status Talking about ‘What Matters’ ‘Living well’ with long term conditions Deteriorating Health Deteriorating & ‘dying well’ Time Best Supportive Care & Palliative Care

6. All patients with advanced illnesses All settings – home, hospital, care home All around the world General indicators Condition related indicators Support for assessment and planning Prompts talking about ‘What Matters’ Online + Print + App www.spict.org.uk Supportive & Palliative Care Indicators Tool

7. Does an increased frequency of discussions about CPR improve the experiences of patient, families & staff? 1 =Yes 2 =No 3 =Don’t know

8. Hoping Coping Not ‘planning for dying’ Patient: “I’ve never broached the subject (of dying) cause I think like I’d rather be positive. I think “I’m not going to get worse.” (Female, 66: Liver failure, diabetes, IHD) Carer: ‘We deal with everything just as it is happening, just day to day stuff and things. We just manage.’ (Carer for male, 87: renal failure, diverticular disease, mild dementia, prostate cancer,) Patient: ‘I’m not afraid to die but I want to live’ (Female, 79: stage IV heart failure, renal failure) Mason B et al. BMJ Supportive Palliative Care 2014;0:1–6. doi:10.1136/bmjspca re-2013-000639 Talking about ‘What Matters’ in advanced illness ‘It could be another year or two or a week or two, who knows…..but he’s obviously not terminal yet.’ GP

9. Hoping Coping Planning “I was worried I was going to be put on the dying pathway… I'm glad to be feeling better and I don’t want to think more about the future right now” Patient The doctor hedged around… it took a while til’ I saw what she was getting at and put her out of her misery. Patient Every time I'm asked, I have to go through and re-live it over again.. do they know how that feels? Carer ‘What Matters’ in the last weeks to days of life “These are not the kind of discussions for when you’re really not well” Patient

10. Talking about ‘trying’ or ‘the chances’ if a treatment will not work, have a very poor outcome or not meet personal goals  directs people to ‘want everything done’. Use of older terms, such as ‘futile’, ‘ treatment limitation’ or ’ceiling of treatment/care’  risks making people think ‘nothing will be done for them’ or care will be ‘rationed’. Moving on to discussing treatment options and planning care before understanding people’s goals and priorities  means people cannot formulate meaningful goals due to lack of a realistic understanding of their situation. Talking about ‘What Matters’ Getting the balance right

11. www.ec4h.org.uk

13. What do you know? What are you expecting? What’s happening? What matters? What would help? Future Care Planning Advance care planning ‘When and if’ plans Anticipatory care planning ‘What to do if’ plans Final days of life planning ‘What matters now’ plans Plan the discussion Urgency Capacity Key people Understanding/ readiness (prognostic awareness) Talking about ‘What Matters’ What we could do is..

14. Effective conversations about What Matters’ Generalisation Sometimes people choose a family member or a close friend to make decisions for them if they get less well in the future. Hypothetical questions If you were less well again like this in the future what do you think we should do? Hope linked with concern We hope the (treatment) will help, but I am worried that at some stage, maybe even soon, you will not get better…. What do you think? Accept uncertainty, change and diverse views Can we talk about what is most important for you now, and how we might cope with not knowing exactly what will happen and when?

15. What would help us most with having good discussions about deteriorating health, death and dying? A.Better public education and information B.Cultural change in all care settings to give more priority to quality of life not just mortality reduction C.Staff support and training in shared-decision making and effective communication D.Making conversations about patient goals and future care planning a part of routine care E.More access to specialist palliative care services

16. Talking about ‘What Matters’ It is much more important to know what sort of patient has a disease than what sort of diseases a patient has.’ ‘Medicine is a science of uncertainty and an art of probability.’ Sir William Osler

17. Finding out what matters when time is short … in Acute Medical and Surgical Units Professor D. Robin Taylor Consultant Respiratory Physician, NHS Lanarkshire Honorary Fellow, Faculty of Medicine, University of Edinburgh

18. Time Organ system failure: end-of-life trajectory Function High Low Death Acute on chronic deterioration Lynn J, Adamson DM. Living well at the end of life. Washington: Rand Health, 2003.

19. Time Organ system failure: end-of-life trajectory Occasions of uncertainty Function High Low Death Lynn J, Adamson DM. Living well at the end of life. Washington: Rand Health, 2003.

20. Time Organ system failure: end-of-life trajectory Occasions of discontinuity of care Function High Low Death Lynn J, Adamson DM. Living well at the end of life. Washington: Rand Health, 2003.

21. Male, 78 years, end-stage COPD Several admissions for AECOPD over the previous year. Admitted with bronchopneumonia and Type 2 respiratory failure. End of life conversation with the patient and his family, at 4pm. Acknowledged to be terminally ill. Agreed that medical treatment would be limited to oxygen, fluids, haloperidol and morphine. This was documented. At 3 a.m. next morning, nursing staff noted the patient to be more breathless. In response, the on-call registrar commenced non-invasive ventilation (NIV) and aminophylline. Patient died on BiPAP 4 hours later. Family very angry. Case study

22. Hiding behind uncertainty  We deal with the present and ignore the future  Limited treatment aims: to achieve a modified recovery from acute event  Relief for the clinician: prognostic truth-telling is avoided  Reprieve for the patient: perpetuation of illusions of recovery

23. Wrestling with discontinuity of care  What is urgent is dealt with in isolation: the CONTEXT of an acute event is neglected  Risk versus benefit analysis is skewed: the risks of NOT intervening motivate inappropriate decision making and treatment  Default interventions are protocol-driven and indiscriminate

24. Scottish Public Service Ombudsman Report, 201400643 May 20, 2015 “Significantly, there was evidence of confusion between staff about whether Mr. X was being provided with active or end of life care”

25. Dying without dignity Parliamentary and Health Ombudsman Report (England), May 20, 2015  Not recognising that people are dying and not responding to their needs  Poor symptom control  Poor communication  Inadequate services out of hours  Poor care planning  Delays in diagnosis and referrals for treatment

26. End of life care Palliative treatments Anticipatory Care Plan Treatment Escalation / Limitation e.g. Ceiling of Treatment

27. Hospital Anticipatory Care Plan: “Ceiling of Treatment” These things matter (1) To minimise harm by avoiding both over-treatment and under-treatment To minimise harm caused by discontinuity of care

28. Hospital Anticipatory Care Plan: “Ceiling of Treatment” These things matter (2)  To prompt and encourage review of treatments which may be potentially futile, burdensome and contrary to the patient’s wishes  To prompt and encourage good communication with patients about the levels of treatment that are appropriate

29. Hospital Anticipatory Care Plan: “Ceiling of Treatment” These things matter (3) In the event of deterioration occurring in an already ill patient …  to provide guidance as to when and/or how to escalate treatment or limit further medical interventions  to provide for improved communication between medical and nursing staff so that they may respond appropriately and consistently.

30. Ceiling of Treatment: ethics  Futile or  Burdensome and/or  Contrary to the patient’s wishes

31. Ceiling of Treatment: ethics  Futile or  Burdensome and/or  Contrary to the patient’s wishes UNETHICAL

32. HACP / C of T: pro forma 3 ROUTINE BLOODS YES / NO OPERATION YES / NO IV FLUIDS YES / NO ANTIBIOTICS YES / NO BLOOD TRANSFUSION YES / NO TRANSFER TO HDU / ITU / CCU YES / NO INVASIVE PROCEDURES: CPR IN THE EVENT OF ARREST YES*/ NO Interventional radiology YES / NO Endoscopy YES / NO Central line YES / NO OTHER (state) ……………………… YES / NO Arterial line YES / NO Arterial puncture YES / NO * A standard DNACPR form should still be completed. This form is not a replacement even although reference to CPR is made.

33. HACP / CofT: pro forma 4 The specific details of this plan should ideally be discussed with the patient (see Note 3 below), or when this is not possible, with the patient’s family /designated other support person. This discussion should be clearly documented separately in the patient’s hospital record. Has been discussed with the patient: YES  NOT POSSIBLE  Name of family member / designated other whom this has been communicated with: …………………………………………………………………………… Person completing this document ……………………………… (Signature) ……………… (Print Capitals) ……………………………… (Position) ………… (Date)………… (Time) Authorised by (consultant responsible) ……………………………..……… (Sign and date) ………………

34. Hospital Anticipatory Care Plan: “Ceiling of Treatment” These things matter (4):  Common sense  Compassion  Communication

35. Hospital Anticipatory Care Plan: “Ceiling of Treatment”  8 versions: Advanced Malignancy, Cardiology, Frailty in Gen. Med., Liver Disease, Orthopaedics, Renal, Respiratory, Surgery.  In WGH: all versions now available in medical, surgical and orthopaedic wards, ECU and HDU. In Hairmyres: A and E, Surgery, Respiratory In Monklands: C of E, Respiratory, ID, Renal.  Training for nursing staff (n=80) and FY1s (n=20), continuing  MCN Pall. Care Focus Group input (Univ. of Stirling)  C of T included in DNACPR training for FY1 and FY2  Aim to include C of T in all introductory and induction courses for FY1s and nurses.

36. I have had a personal experience of attending / caring for an elderly relative with a chronic progressive condition e.g. heart failure, COPD, and the prognosis was thought about and discussed during the last 12 months of life. 1 = I have not had that experience 2 = I have had that experience and prognosis WAS NOT meaningfully discussed at any time 3 = I have had that experience and prognosis WAS meaningfully discussed but only during the terminal phase 4 = I have had that experience and prognosis WAS meaningfully discussed at an appropriate time

37. In either a professional OR a personal capacity, I have experienced a situation in which the absence of a treatment escalation / limitation plan has contributed adversely to patient care. 1 = no, never 2 = yes, once only or once in a while 3 = yes, quite frequently