ICDs - decisions at the end of life James Beattie Consultant Cardiologist Heart of England NHS Foundation Trust, Birmingham, UK National Clinical Adviser, NHS Heart Improvement Heart
Statement of disclosure I have no conflicts of interest relevant to this presentation.
European Device Championships ICD and CRT-D European implant rates per million inhabitants 2005-2007 Camm JA, Nisam S. Europace 2010;12:1063-9
Heart failure guideline driven care paradigm Spencer Tunick, Selfridges, London 2003
The heart failure disease trajectory Mild 12% 24% 64% CHF Other Sudden Death Moderate 26% 59% 15% CHF Other Sudden Death Severe 33% 11% 56% CHF Other Sudden Death n = 103 n = 103 n = 27 MERIT-HF Study Group. Lancet, 1999, 353:2001 Modified from Goodlin, S. J. JACC 2009, 54:386-96
Accepting futility may be difficult
HF individual prognosis ambiguous A A R I S I N G A B B R I S K Modified from Goodlin SJ, JACC 2009, 54:386-96 A B C D C O F A B C D D D E A T H
Ironic technology I have an ICD and a pacemaker. It s prolonged my life a little bit. But the longer it prolongs my life, the more things happen to me that it can t correct. So the question is, do you want to have those effects, or do you want to end it all? 86 year old man. Kaufman SR. Soc Sci Med 2011,72:6-14.
ICDs and the new demography Elderly patients (>75) were excluded from many of the major ICD trials but still likely benefit ICDs improve long term survival in those with cardiac disease - may result in recipients living long enough to develop new comorbidities such as PVD, CVA, renal failure, dementia or cancer Little information available about how to manage those with HF who progress to Stage D
Trade-off: survivorship and fragility? Trajectories of disability in the last year of life Gill TM. NEJM 2010;362:1173-80.
Valid informed consent and information exchange when considering ICD therapy Comprehensive and open discussion of the risks and benefits of ICD therapy :Use of risk assessment tools such as the Seattle Heart Failure Model may facilitate that discussion Review and document patients views on procedures, use of devices and risk of death goals of care patient values any advance directives Discussion of eventual deactivation option
AHA Scientific Statement Circulation. 2012, 125: 1928-52
Who are the stakeholders in decision making? Patient Autonomy, quality of life, individual needs Family Proxy decision makers, quality of life HF physician Risk management concerns Medical / nursing professions Standards, protocols Hospital Policies, accreditation, affiliations State Resource allocation, legal regulation Culture
ICD decisions at the end of life 100 NOK interviewed about ICD management Deaths were classified into one of 4 groups: Sudden cardiac 9%; Non-sudden cardiac 51% Sudden non-cardiac 4; Non-sudden non-cardiac 36% Any discussion 27 Deactivation requested 21 Time interval between discussion on deactivation and death: Days 76% Hours 22% Minutes 4% Goldstein NE, Ann Int Med, 2004,141: 835
Patients attitudes toward deactivation of ICDs Participants: 15 outpatients 2 ICD > 1year, no shock mean age 69 (19) 8 ICD > 1 year + shock 5 ICD < 1 year, no shock None had ever discussed deactivation or knew this was an option Expressed anxiety about their device wanted more information They declined to discuss deactivation - That s like an act of suicide All believed that device was exclusively beneficial Happy to defer any decision on deactivation to their physician Goldstein NE, Gen Intern Med, 2008, 23(Suppl 1): 7-12
Information exchange at time of decision to insert ICD? Göteborg study - 31 patients - moderate HF and history of malignant arrhythmia None received information about: - alternative treatment with anti-arrhythmic drugs - estimated risk of fatal arrhythmia - expected time of survival from the HF syndrome Patients did not complain about the lack of information or lack of participation in decision-making Passively accepted health professionals advice None regretted their decision Ågård A. J Med Ethics 2007;33: 514-18
Complexities preventing physicians discussing ICD deactivation at the end of life Discussants: 4 EP, 4 Cardiologists, 4 GIM / geriatricians All accepted the need for discussion but admitted this rarely happened Perceived to be more difficult than other management decisions - It s like crossing a bridge..,..shutting off hope Small internal nature of the device they forget! A lack of relationship with the patient Their own general concerns about treatment withdrawal Goldstein NE, Gen Intern Med, 2008, 23 (Suppl 1): 2-6.
Silo working: do we miss the big picture?
European Consensus Statement Europace 2010, 12:1480-9
Key components of palliative care service Eur J Heart Fail. 2012, 14:803-69
ICD recipients: had EOL issues been considered or discussed? n= 278 Kirkpatrick JN Am J Cardiol 2012, 109:91-4
ICD recipients: when should an AD for deactivation be discussed? n= 278 Kirkpatrick JN Am J Cardiol 2012, 109:91-4
ICD recipients: who should discuss EOL device management? n= 278 Kirkpatrick JN Am J Cardiol 2012, 109:91-4
Doctors confidence in delivering end of life care Nov 2008
NCPC / BHF survey of ICD handling in palliative care Specialist palliative care in England, Wales and NI - 2011 Does your service admit patients with active ICDs or CRT-D devices? 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Yes No Don't know Beattie JM BMJ Supp Pall Care 2012, 2:A101
NCPC / BHF survey of ICD handling in palliative care Of those services admitting patients with active devices, only: 50% used explicit device-related admission documentation 26% had a site specific or regional deactivation policy in place 44% had no access to a magnet for emergency deactivation 32% provided staff training in this intervention Beattie JM BMJ Supp Pall Care 2012, 2:A101
ICDs - decisions at the end of life Summary ICD management in advanced disease is challenging Health professionals must ensure that treatment is personalised, remains appropriate, and held within an ethical framework Goals of care and benefits / burdens of ICDs need to be discussed and reappraised with patients and families to ensure best interests are maintained Incorporation of ADs may facilitate the prospective deactivation of ICDs as with the withdrawal of other redundant / futile therapies if the focus changes towards symptom relief close to the end of life We must ensure robust deactivation protocols are in place