Consultant Cardiologist Glasgow Royal Infirmary and West of Scotland Heart & Lung Centre, Golden Jubilee National Hospital

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1 Derek T. Connelly Consultant Cardiologist Glasgow Royal Infirmary and West of Scotland Heart & Lung Centre, Golden Jubilee National Hospital Honorary Clinical Associate Professor, University of Glasgow

2 Meta-analysis - ICD v Amiodarone S J Connolly, Eur Heart J 2000; 21:2071-8

3 MADIT II Results Moss et al New Engl J Med 2002; 346:

4 Mortality SCD-HeFT: Mortality by Intention-to-Treat HR 97.5% Cl P-Value Amiodarone vs. Placebo , ICD Therapy vs. Placebo , Amiodarone ICD Therapy Placebo Months of follow-up Bardy GH et al New Engl J Med 2005; 352:

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6 Swedberg K et al Eur Heart J 1999; 20: 136-9

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9 Emergency: Magnet

10 Deactivation: challenges Availability of magnet for inhibition of tachycardia therapies Availability of programmer for patients being cared for at home or in hospice Delivery of service: who takes the programmer to the patient s home? Limited programming options for patients who might want certain therapies programmed

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12 Functions of the ICD Bradycardia pacing (including post shock) (Cardiac resynchronisation pacing) Detection of arrhythmias (Detection of worsening heart failure) Anti-tachycardia pacing to terminate VT Cardioversion and defibrillation of VT and VF

13 Palliative Care and ICDs There is nothing palliative about the shock function of an ICD Shocks are painful Shocks are generally infrequent Fear of shocks* may be more of a problem than shocks themselves *or fear of multiple shocks

14 Defibrillation and pain Shock lasts 10 ms Pain lasts a few seconds The average ICD patient gets less than one shock per year 1 year = 31.5 million seconds 1 month = approx 2.5 million seconds If a patient is getting 1 shock per month, pain is present % of the time

15 Sudden Death During Ambulatory ECG Monitoring 157 cases from 10 published studies 98 (62.4%) VT VF 13 (8.3%) primary VF 20 (12.7%) torsades de pointes Often in patients without structural heart disease, being treated with antiarrhythmic drugs 26 (16%) bradycardia asystole Very few had ischaemic ST-T changes Bayes de Luna, Coumel & Leclerq Am Heart J 1989; 117: 151-9

16 Characteristics of Patients Who Die with Heart Failure and Low EF 160 patients with LVEF 35% died in FU at Brigham and Women s Hospital, Boston, between Jan 1 st 2000 and October 2003 In 6 months prior to death 93% had NYHA III/ IV symptoms Death was considered sudden in only 21% of cases Often bradycardia / PEA rather than VT/VF 37% had ICDs (mostly switched off) Teuteberg JJ et al. J Cardiac Failure 2006;12:47-53

17 If I had an ICD and a terminal illness I still wouldn t want to die suddenly I wouldn t want CPR but still might want my ICD to be active I would still want antitachycardia pacing for VT I might still put up with the occasional shock But I wouldn t want to have multiple shocks if the first 1-2 shocks didn t work... And I wouldn t want to have several shocks in one day

18 If I had an ICD and a terminal illness I still wouldn t want to die suddenly I wouldn t want CPR but still might want my ICD to be active I would still want antitachycardia pacing for VT I might still put up with the occasional shock But I wouldn t want to have multiple shocks if the first 1-2 shocks didn t work... And I wouldn t want to have several shocks in one day These are not programmable options!

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20 Kramer DB et al N Engl J Med 2012; 366: 291-3

21 ICD replacement There are several important opportunities for and obstacles to making ICD replacement a more deliberate process Clinical data must be re-evaluated? deterioration (or improvement) in health Patients experiences of device therapy Patients changes in values / preferences Kramer DB et al N Engl J Med 2012; 366: 291-3

22 Kramer DB et al N Engl J Med 2012; 366: 291-3

23 Case Study CW DoB 23/9/45 ICD implant 2005 for sustained VT Moderate LVSD; NYHA Class I Occasional episodes of VT requiring antitachycardia pacing; no shocks Device now approaching end of battery life Severe stroke 10 months ago; in nursing home; wheelchair-bound; aphasic Wife does not accept that his disability is permanent; she wants his device to be replaced

24 Case study Rev PJGB DoB 6/2/31 Previous anterior MI, LBBB (QRS width 150ms); previous CABG; LVEF 30% Primary prevention ICD 2007 No events, no therapies since implant Recent worsening heart failure ICD nearing end of battery life Replace with ICD? Replace with CRT-defibrillator? Replace with CRT-pacemaker?

25 When to deactivate: Literature review Pettit SJ et al BMJ Supportive & Palliative Care 2012; 2: 94-97

26 Review of records of 63 patients who died with an ICD in situ Terminal diagnosis leading to ICD inactivation in 32% For patients with active ICDs, 21% received a shock within their final month For patients with deactivated ICDs, 15% had received a shock within their final month (prior to deactivation) Lewis et al Am J Med 2006; 119: 892

27 Questionnaire to relatives of 100 patients who died with an ICD in situ 27 patients received ICD shocks in their last month of life 21 of these had DNR orders 8 patients received shocks within their last minutes of life Goldstein et al Ann Intern Med 2004; 141: 835

28 When should ICD deactivation be discussed? ESC When it is clinically obvious that a patient is about to die When a DNR order is in force When impairment of QOL is such that sudden death might be considered a relief British Heart Foundation When markers of poor prognosis in advanced heart failure are present Pettit et al 2012

29 When should ICD deactivation be discussed? HRS Expert Consensus Statement Central role of the patient in deciding when their ICD should be deactivated Counselling should be an ongoing process, starting pre-implant and continuing as patient s health changes Deactivation discussion should be prompted by Multiple ICD shocks Repeated hospitalisation DNR orders end of life Patients decision should be supported, even if it sems illogical to the physician Pettit et al 2012

30 When is ICD deactivation discussed? EHRA survey (2010): Only 4% of cardiologists discussed deactivation pre-implant Onlu 11% were regularly involved in discussions about deactivation Only 4% gave written info to patients about deactivation Survey of relatives of ICD patients Deactivation discussed in only 27% of cases 75% in last days of life 22% in last hours of life 4% in last minutes of life Pettit et al 2012

31 ICD deactivation in hospices Survey of 900 hospices in USA (2010) 40% of hospices had at least one patient who had experienced multiple shocks in the preceding year 42% of patients had ICD deactivated while receiving hospice care Only 10% of hospices had policies that addressed deactivation at end of life Goldstein et al Ann Intern Med 2010; 15: 296

32 Pettit SJ et al BMJ Supportive & Palliative Care 2012; 2: 94-97

33 ICDs: End-of-life issues No evidence base Difficult to discuss these issues pre-implant (unless patient / relative initiates discussion) Should be discussed openly and sensitively when any crisis or deterioration occurs Multiple shocks Deteriorating heart failure Concomitant life-threatening illness, e.g. malignancy, renal failure, stroke Should be mentioned routinely in booklets / website info that is made available to patients In the UK, patient info is available from the British Heart Foundation ( ) and the Arrhythmia Alliance (

34 Why is deactivation so difficult to discuss? No guidelines No evidence! Prognostication in heart failure is difficult which makes the timing of device deactivation uncertain Emotive subject requiring advanced communication skills Lack of education Healthcare professionals considering deactivation at the appropriate time Patients concern that they will die immediately Ethical issues

35 When I die, I want to go quickly in my sleep, like my grandfather. not screaming in terror like the passengers in his car

36 Conclusions All patients want to avoid undue suffering at time of death BUT many patients want to avoid sudden death! Even at an advanced stage in their condition ICD patients may be a self-selected group Death by VT/VF storm is highly unusual The wishes and preferences of the patient are of the utmost importance

37 Conclusions Deactivation should be discussed early And again at appropriate points in the patient s illness Deactivation should be performed late? At a time when the patient wants it Deactivation should be an available option in home or hospice Further research needed regarding therapies that patients might find acceptable close to end of life Dialogue needed with manufacturers regarding programming options at end of life

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