Making Decisions About Implantable Cardioverter-Defibrillators from Implantation to End of Life: An Integrative Review of Patients’ Perspectives

Lewis, Krystina B.; Stacey, Dawn; Matlock, Daniel D.

doi:10.1007/s40271-014-0055-2

Cited by 70 publications

(60 citation statements)

References 56 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…5 It is unclear how possible benefits and harms are communicated to patients during the clinical encounter and how patients make sense of this information. A 2014 review 10 identified that patients faced with ICD-related decisions often misunderstood the functionality of ICDs, or overestimated their benefit, and the authors recommended a SDM approach to achieve improved patient outcomes.…”

Section: Methodsmentioning

confidence: 99%

A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care

Standing

Exley

Flynn

et al. 2016

Health Serv Deliv Res

View full text Add to dashboard Cite

Background Implantable cardioverter defibrillators (ICDs) are recommended for patients at high risk of sudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacing function to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticated and can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using a pacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiac resynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involves considering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks and psychological problems) and the potential need for deactivation towards the end of life. Objectives To explore patients’/relatives’ and clinicians’ views/experiences of decision-making about ICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits and consequences are communicated to patients, to identify individual and organisational facilitators and barriers to discussions about implantation and deactivation and to determine information and decision-support needs for shared decision-making (SDM). Data sources Observations of clinical encounters, in-depth interviews and interactive group workshops with clinicians, patients and their relatives. Methods Observations of consultations with patients being considered for ICD or CRT-D implantation were undertaken to become familiar with the clinical environment and to optimise the sampling strategy. In-depth interviews were conducted with patients, relatives and clinicians to gain detailed insights into their views and experiences. Data collection and analysis occurred concurrently. Interactive workshops with clinicians and patients/relatives were used to validate our findings and to explore how these could be used to support better SDM. Results We conducted 38 observations of clinical encounters, 80 interviews (44 patients/relatives, seven bereaved relatives and 29 clinicians) and two workshops with 11 clinicians and 11 patients/relatives. Patients had variable knowledge about their conditions, the risk of sudden cardiac death and the clinical rationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians used various metaphors, verbal descriptors and numerical risk methods, including variable disclosure of the potential negative impact of ICDs on body image and the risk of psychological problems, to convey information to patients/relatives. Patients/relatives wanted more information about, and more involvement in, deactivation decisions, and expressed a preference that these decisions be addressed at the time of implantation. There was no consensus among clinicians about the initiation or timing of such discussions, or who should take responsibility for them. Introducing deactivation discussions prior to implantation was thus contentious; however, trigger points for deactivation discussions embedded within the pathway were suggested to ensure timely discussions. Limitations Only two patients who were prospectively considering deactivation and seven bereaved relatives were recruited. The study also lacks the perspectives of primary care clinicians. Conclusions There is discordance between patients and clinicians on information requirements, in particular the potential consequences of implantation on psychological well-being and quality of life in the short and long term (deactivation). There were no agreed points across the care pathway at which to discuss deactivation. Codesigned information tools that present balanced information on the benefits, risks and consequences, and SDM skills training for patients/relative and clinicians, would support better SDM about ICDs. Future work Multifaceted SDM interventions that focus on skills development for SDM combined with decision-support tools are warranted, and there is a potential central role for heart failure nurses and physiologists in supporting and preparing patients/relatives for such discussions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

show abstract

Section: Methodsmentioning

confidence: 99%

A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care

Standing

Exley

Flynn

et al. 2016

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…A recent integrative review of 24 articles related to patients’ perceptions of ICD decision-making identified a significant degree of misunderstanding about the risks, benefits, and trade-offs in ICD treatment. 67 Patients often overestimate the benefits and underestimate the risks. One survey of patients demonstrated that they overestimate the benefits of ICD by over 400%.…”

Section: Current Knowledgementioning

confidence: 99%

“…68 Another study demonstrated that patients reported learning of many of the risks after implantation. 69 Importantly, a consistent theme of many of the studies in the integrative review was that many patients were unaware of the option to deactivate their ICD 67 , a particularly critical point of knowledge for older patients who may have multiple comorbidities.…”

Section: Current Knowledgementioning

confidence: 99%

“…Similarly, even with the sudden death prevention provided by ICDs, mortality among older ICD recipients remains high, placing great importance on careful advance care planning. However, patients unaware of ICD deactivation as an option 67 may leave patients and families unprepared at the end of life. ICD shocks at end of life are painful for patients and distressing for families.…”

Section: Current Knowledgementioning

confidence: 99%

See 1 more Smart Citation

Implantable Cardioverter–Defibrillator Use in Older Adults

Kramer

Matlock

Buxton

et al. 2015

Circ: Cardiovascular Quality and Outcomes

View full text Add to dashboard Cite

“…Can subgroups be identified that clearly do not benefit from or may even be harmed by these therapies? What are the best estimates of individual outcomes with or without therapy that might improve informed consent and shared decision-making?3…”

mentioning

confidence: 99%