Welcome (Kerry) What is Heart failure (Becca) Recognising Dying (Becca) Tea 20 mins Deactivation of ICDs (Lisa) Advanced care Planning (Jo) Any
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1 12 th October 2017
2 Welcome (Kerry) What is Heart failure (Becca) Recognising Dying (Becca) Tea 20 mins Deactivation of ICDs (Lisa) Advanced care Planning (Jo) Any Questions
3 Symptoms caused by a structural and/or functional cardiac abnormality, resulting in a reduced cardiac output and/or elevated intracardiac pressures at rest or during stress (European Guidelines 2016)
4 Breathlessness oedema Fatigue
5 New York Heart Association Classes I = No limitation of physical activity II = Slight limitation- ordinary activity cause symptoms III = Marked limitations comfortable at rest IV = Unable to perform any activities may have symptoms at rest
6 Ischaemic Heart Disease Hypertension Valvular Congenital Alcohol Arrhythmias Viral
7 HF REF - ( LVSD) ejection fraction < 40% HF PEF - any other structural abnormality of the heart e.g. dilated atria, diastolic disease Valvular HF - structural abnormality of heart valves which effects blood flow
8 Cardiac Ultrasound (echo cardiogram)
9 A healthy heart with a total blood volume of 100 ml that pumps 60 ml to the aorta has an ejection fraction of 60%. A heart with an enlarged left ventricle that has a total blood volume of 140 ml and pumps the same amount (60 ml) to the aorta has an ejection fraction of 43%.
10
11
12 1 year survival with NYHA 4 remains 50% mortality 5 year survival remains 50% all types and stages of heart failure More fatal than Prostate Cancer and Bowel cancer.
13 Heart failure is common and increasing as elderly population increases It is normally a life-limiting diagnosis We need to recognise its later stages and prepare our patients and carers for end of life
14 RECOGNISING DYING IN HF PATIENTS Rebecca Hodge Heart Failure Specialist Nurse TSDHCT
15 What we know Mean life expectancy is 3.1 years from diagnosis 14% die within 6 months (Mehta, Dubrey 2009) 40% of NYHA III/IV patients die within 1 year of diagnosis despite optimal medical treatment (Dargie 2008) Half of all patients die suddenly (critical arrhythmia) (Dargie 2008) Only 6% of those dying with HF were referred to Palliative care services (NICOR 2012)
16 Disease Trajectory
17 Patient Priorities Access to quick and accurate diagnosis Good links between services, organisations and professions Having a point of contact and someone who can coordinate care requirements Easy access to specialist advice and medication Access to specialist services such as rehabilitation and counselling Regular follow-up and ability to seek advice at short notice Honesty about their prognosis (Healthcare Commission 2007a)
18 Prognostication Notoriously difficult in HF Functional indicators are often more reliable than clinical signs Common models HF Survival Score (HFSS) Seattle HF Score (SHFF) Leave lots of Caveats
19
20 Why talk about Prognosis Some patients want to know Motivate patients to improve compliance and adapt lifestyles Provides an opportunity to plan ahead e.g. retirement, businesses, wills, power of attorney, housing, family issues Informed consent is a fundamental ethical principle Avoids frustration and disappointment when unrealistic expectations are not met
21 Trigger Tools To help identify patients in the last year of life: 4 or more admissions to hospital in last 12 months; + You would not be surprised if the patient died within the next 6 12 months; + 1 of the following apply:- New York Health Association (NYHA) Class III (moderate) or IV (severe) Symptoms despite maximum tolerated treatment
22 Starting the Conversation Be prepared - know your facts What do they know? Warning shot Accept denial Check understanding Communicate the conversation Be available
23 Red Flags Have I missed reversible options? Advanced III / IV (Is the patient a candidate for CRT?) Angina (Does the patient need revascularisation therapy?) Murmurs/Important Valve Disease (Does the patient need valve intervention?) AF (Would better rate control or cardioversion help?) Unable to tolerate all HF medication (e.g. low BP or renal dysfunction)
24 When to discuss dying After admission to hospital - use the trajectory Failure to respond to treatment ICD checks When the patient/family brings it up After MDT
25 Last few months Increasingly unable to perform ADL s independently Requiring more diuretics for oedema and breathlessness Falling BP Loosing weight and decreased appetite Increasing tiredness, falling asleep Feeling too hot or cold
26 Last few weeks Breathlessness at rest rule out PE, C. Infection, anaemia Oedema leaking exudate, not responding to treatment Pruritus - renal failure Nausea and vomiting- liver congestion Weight loss increased metabolism in the dying phase Anxiety and depression Pain ischaemia or enlarged liver
27
28 Last few Days Stops eating then drinking Bladder and bowel problems Breathing pattern alters (Cheyne-Stokes Respiration) Confusion or decreased level of consciousness Blood pressure and heart rate decrease
29 Model of Care
30 General guidance Discuss with GP and palliative care service Reduce any medication which causes hypotension if symptomatic, consider stopping meds when necessary Continue diuretic treatment Stop monitoring U&E s Oramorph is useful for breathlessness and anxiety Consider anti-emetics and hyoscine if indicated
31 Undoing the drugs Consider first Consider second Consider third Medication with only long term benefits Medium term benefits Short term benefits Statins ACE inhibitors/arb s Digoxin in AF Digoxin in sinus rhythm Beta- blockers Beta-blockers in AF Aspirin MRA s Anti- anginals Clopidogrel Levothyroxine Loop and thiazide diuretics Warfarin Hypoglycaemic
32 Recognising Dying Art not a science If in doubt discuss with other HCP s Talk to your patient and their family about the changes your seeing Try not to dodge the difficult questions
33 Deactivation of ICDs in heart failure patients Lisa Lovedale Heart Failure specialist nurse Torbay & South Devon NHS Foundation Trust
34 Implantable cardioverter defibrillators Device (pacemaker) monitors heart rhythm, detects VT / VF, gives therapy to restore normal rhythm Anti-tachy pacing (fast pacing) or shocks HF patients have increased risk of sudden cardiac death (from VT or VF) NICE guidance many HF patients eligible for ICD Deactivation will become desirable at EOL
35 How, who, when, where Discussions.. Who? When?? Who decides? How is it deactivated? By whom? Where is it deactivated? Will death happen immediately? / cause a more distressing death? Is deactivation permanent? Why deactivate the ICD?
36 ICD deactivation.true / false hastens death FALSE makes a difference to how the patient feels FALSE can reduce distress / pain at EOL TRUE Is permanent FALSE Decision to deactivate an ICD should be made by the patient? TRUE
37 How an ICD is deactivated 2 ways Planned Using programmer as used for usual checks settings changed Other device functions still active Done by cardiac physiologist, usually in clinic (can be in hosp or pt s home) Emergency doughnut magnet on the skin directly over the site of generator Has to stay in situ Magnet CCU, H&L Unit. Paramedic, ED Usually emergency or temporary measure
38 Patient case study 73yr male Lived with his wife (retired nurse), 2 adult daughters Medical history Initial assessment HFREF (ischaemic) EF 21% Extensive cardiovascular disease MI, CABG, CVE (L hemiparesis) Paroxysmal atrial fibrillation Type 2 diabetes mellitus ICD for VT 1989 Recent hospital admission for HF decompensation Wife wanted to nurse her husband at home Multidisciplinary input Bed bound NYHA class 3-4 peripheral oedema (up to thighs) BP 100/60 Wife enquiring about ICD deactivation wishes of patient & wife discussed
39 What happened next 2 nd visit. Deterioration, end of life Drowsy, unable to complete sentences Widespread pitting oedema BP 80/50 Diminished urine output Skin cool & mottled Plan - wife to discuss with family - HFN discuss with cardiac dept colleagues
40 Cardiac physiologist deactivation not available. HFN to deactivate using magnet (Cardiologist, cardiac physiologist) Next day co-ordinated visit to deactivate Patient died at home with his family 3 days later
41 Reflection of case study what are your thoughts? Decision making Diagnosing & recognising end of life Using interim methods for deactivation knowledge of unwanted shocks ( Sherazi et al 2013) Key points Could crisis management have been avoided? Involving patient & family. Communication The need for TIMELY & regular discussions about ICD deactivation Inter-professional working, decision-making & support Better advanced planning and early discussion Reinforces need for local guidelines with practical applications
42 Patient & family wishes Evidence supporting decision making Patient Timely ICD deactivation Recognising EOL in HF patients Communication reassurance Integrated Teamwork / collaboration
43 Advanced Care Planning In Heart Failure Integrated Heart Failure Nurse Specialist Team
44 Aim & Objectives To increase understanding of advanced care planning, especially in heart failure To describe differences between ACP & ADRT To discuss the legal aspects To consider the who, when, where and how? To discuss other considerations in heart failure
45 Why Advanced Care Plan One Chance to Get It Right (2014)
46 Types of Advanced Care Planning TEP Treatment Escalation Plan ACP Advanced Care Plan ADRT Advanced Decision to Refuse Treatment
47 What is an advanced care plan? An opportunity to think about what MAY happen to us in anticipation of our end of life ACP should be process of discussion(s) between an individual of any age and their care providers (irrespective of discipline) which may include or clarify:- Their understanding of their illness and prognosis, treatment options and availability of these Their wishes, values, beliefs and preferences or goals for care Any concerns they may have Any decisions they wish to make and communicate (Slide kindly provided by Kerry Macnish)
48 Advanced Decision to Refuse Treatment
49
50 When to discuss? No RIGHT answer Taboo subject in England According to Martin Lewis (Money guru) NOW Life changing event At diagnosis Recurrent hospital admissions Worsening symptoms despite increasing interventions Patient asking questions Before patient loses capacity NEVER Continuous discussion not a one off conversation
51 Difficulties in heart failure Unpredictable disease trajectory Evidence base constantly updated Risk of sudden death Device therapies (ICD guidelines) Clinician reluctance Patient/family reluctance
52 Who should discuss?
53 Who should discuss? Slide kindly provided by Kerry Macnish
54 How to discuss? What, if any thoughts/feelings have you had about the future? Have you thought about what you want to happen next? has that been playing on your mind?.what worries you the most about that?..can you tell me more about that? Have you talked with your family about where you wish to be cared for if you feel less well? What things do you want people to know about you in caring for you now and in the future? What things are important to you (and your those close to you)? Slide kindly provided by Kerry Macnish
55 Where to record?
56 Books for future planning
57 Want to know more? Book onto Rowcroft Hospice excellent courses Look up trust/home policies E-learning Click on links in this powerpoint Twitter Marie Curie, Macmillan, Hospices
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