Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members’ experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care.
Methods:
This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014.
Results:
Three main themes described family members’ experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients’ perception on ICD deactivation, and communication methods.
Discussion:
Health-care providers need to have knowledge of patients’ decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.
YancyCJessupMBozkurtB. 2013ACCF/AHA guideline for the management of heart failure. Circulation. 2013;128(16):e240–e327. doi:10.1161/CIR.0b013e31829e8776.
2.
GoASMozaffarianDRogerVL. Heart disease and stroke statistics–2014 update: a report from the American Heart Association. Circulation. 2014;129(3):e28–e292. doi:10.1161/01.cir.0000441139.02102.80.
GershBJMaronBJBonowRO. 2011ACCF/AHA guideline for the diagnosis and treatment of hypertrophic cardiomyopathy: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Thorac Cardiovasc Surg. 2011;142(6):e153–e203. doi:10.1016/j.jtcvs.2011.10.020.
5.
TracyCMEpsteinAEDarbarD. Focused update of the 2008 guidelines for device-based therapy of cardiac rhythm abnormalities: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines and the Heart Rhythm Society. Circulation. 2012;126(14):1784–1800. doi:10.1161/CIR.0b013e3182618569.
6.
LewisWRLuebkeDLJohnsonNJHarringtonMDCostantiniOAulisioMP. Withdrawing implantable defibrillator shock therapy in terminally ill patients. Am J Med. 2006;119(10):892–896. doi:10.1016/j.amjmed.2006.01.017.
7.
LampertR. Implantable cardioverter-defibrillator shocks in dying patients: disturbing data from beyond the grave. Circulation. 2014;129(4):414–416. doi:10.1161/circulationaha.113.006939.
8.
SheraziSMcNittSAktasMK. End-of-life care in patients with implantable cardioverter defibrillators: a MADIT-II substudy. Pacing Clin Electrophysiol. 2013;36(10):1273–1279. doi:10.1111/pace.12188.
9.
KinchWASjoblomJMattiassonACRosenqvistMFrykmanV. Implantable cardioverter-defibrillator therapy before death: high risk for painful shocks at end of life. Circulation. 2014;129(4):422–429. doi:10.1161/circulationaha.113.002648.
10.
WilkoffBLAuricchioABrugadaJ. HRS/EHRA expert consensus on the monitoring of cardiovascular implantable electronic devices (CIEDs): description of techniques, indications, personnel, frequency and ethical considerations. Heart Rhythm. 2008;5(6):907–925.
11.
GoldsteinNELampertRBradleyELynnJKrumholzHM. Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med. 2004;141(11):835–838.
12.
RussoJE. Deactivation of ICDs at the end of life: a systematic review of clinical practices and provider and patient attitudes. Am J Nurs. 2011;111(10):26–37.
13.
SearsSFMatchettMContiJB. Effective management of ICD patient psychosocial issues and patient critical events. J Cardiovas Electrophysiol. 2009;20(11):1297–1304. doi:10.1111/j.1540-8167.2009.01526.x.
14.
Van Den BroekKCHabibovicMPedersenSS. Emotional distress in partners of patients with an implantable cardioverter defibrillator: a systematic review and recommendations for future research. Pac Clin Electrophysiol. 2010;33(12):1442–1450. doi:10.1111/j.1540-8159.2010.02885.x.
15.
KramerDBMitchellSLBrockDW. Deactivation of pacemakers and implantable cardioverter-defibrillators. Prog Cardiovasc Dis. 2012;55(3):290–299. doi:10.1016/j.pcad.2012.09.003.
16.
ThanavaroJL. ICD deactivation: review of literature and clinical recommendations. Clin Nurs Res. 2013;22(1):36–50. doi:10.1177/1054773812443893.
17.
RaphaelCE. Deactivation of implantable cardioverter-defibrillators in terminal illness and end-of-life care. Am J Cardiol. 2012;109(9):1384. doi:10.1016/j.amjcard.2012.02.007.
18.
GuoBHarstallC. Advance Directives for End-of-Life Care in Elderly: Effectiveness of Delivery Modes. Canada: Alberta Heritage Foundation for Medical research; 2004.
19.
Van ManenM. Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. Canada: The State University of New York; 1990.
DeySAbernethyARogersJO’ConnorC. Preferences of people with advanced heart failure-a structured narrative literature review to inform decision making in the palliative care setting. Am Heart J. 2012;164(3):313–319.
22.
HauptmanPSwindleJHussainZBienerLBurroughsT. Physician attitude toward end-stage heart failure: a national survey. Am J Med. 2008;121(2):127–135.
23.
KalowesP. Improving end-of-life care prognostic discussions: role of advanced practice nurse. AACN Advance Critical Care. 2015;26(2):151–166.
24.
DunlaySMFoxenJLColeT. A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure. Palliat Med. 2015;29(3):260–267.
25.
WesterdahlASjoblomJMattiassonARosenqvistMFrykmanV. Implantable cardioverter-defibrillator therapy before death high risk for painful shocks at end of life. Circulation. 2014;129(4):422–429.
26.
FluuCBolseKStrombergAThylenI. Patients’ experiences of the implantable cardioverter defibrillator (ICD); with a focus on battery replacement and end-of-life issues. Heart Lung. 2013;42(3):202–207. doi: 10.1016/j.hrtlng.2012.11.006.
27.
DunbarSBLangbergJJReillyCM. Effect of a psychoeducational intervention on depression, anxiety, and health resource use in implantable cardioverter defibrillator patients. Pacing Clin Electrophysiol. 2009;32(10):1259–1271.
DunbarSBDoughertyCMSearsSF. American Heart Association Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Cardiovascular Disease in the Young. Educational and psychological interventions to improve outcomes for recipients of implantable cardioverter defibrillators and their families: a scientific statement from the American Heart Association. Circulation. 2012;126(17):2146–2172. doi:10.1161/CIR.0b013e31825d59fd.
30.
GuraMT. Considerations in patients with cardiac implantable electronic devices at end of life. AACN Advance Critical Care. 2015;26(4):356–363.
31.
SulmasyDHallerKTerryP. More talk, less paper: predicting the accuracy of substituted judgments. Am J Med. 1994;96(5):432–438.
32.
OtteIElgerBJungCBallyK. The utility of standardized advance directives: the general practitioners’ perspective. Med Health Care Philos. 2016;19(2):199–206.
