Views of patients with heart failure about their role in the decision to start implantable cardioverter–defibrillator treatment: prescription rather than participation

Ågård, Anders; Löfmark, Rurik; Edvardsson, Nils; Ekman, Inger

doi:10.1136/jme.2006.017723

Cited by 40 publications

(41 citation statements)

References 29 publications

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“…8,9 There is a dearth of information relating to the role that potential ICD patients can and want to have in the decision-making process and what potential recipients need to know before they decide to have ICD therapy. 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%

“…6,13,14 Little is known about how patients make sense of information about ICDs and what patients' information needs and preferences are with respect to implantation and deactivation. 5,6,15,16 By documenting current decision-making throughout the care pathway, and by exploring patients', family members' and clinicians' views of decision-making, we have addressed these knowledge gaps to help determine how to better support SDM about ICD implantation and deactivation.…”

Section: Methodsmentioning

confidence: 99%

“…5,6 Shared decision-making (SDM), whereby doctors and patients make joint decisions informed by best evidence and aligned with patient values and preferences, 7 is associated with improvements in patient involvement, knowledge and accurate risk perception, leading to informed values-based choices and increased treatment adherence. 8,9 There is a dearth of information relating to the role that potential ICD patients can and want to have in the decision-making process and what potential recipients need to know before they decide to have ICD therapy.…”

Section: Methodsmentioning

confidence: 99%

“…8,9 There is a dearth of information relating to the role that potential ICD patients can and want to have in the decision-making process, and what potential recipients need to be informed about before they decide to have ICD therapy. 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. Indeed, data on patients' expectations of ICDs suggest that survival benefits might be substantially overestimated, 21 and improvements to how information on the clinical rationale for ICDs (including the fact that simple ICDs do not confer any symptom or quality-of-life benefits) is communicated to patients and their relatives may be warranted.…”

Section: Structure Of the Reportmentioning

confidence: 99%

“…5 In terms of implantation decisions, we aimed to provide guidance on how to improve existing decision support and to provide better support for SDM to ensure that implantation decisions are appropriate and fit with the values and preferences of patients. With respect to deactivation decision-making, we sought to better understand how discussions currently take place, and the information needs and preferences of patients at different points in the patient journey, in order to feed into appropriate advance care planning.…”

Section: Health Needmentioning

confidence: 99%

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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

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Structure Of the Reportmentioning

confidence: 99%

Section: Health Needmentioning

confidence: 99%

See 3 more Smart Citations

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

Patient Perceptions, Physician Communication, and the Implantable Cardioverter-Defibrillator

Hauptman¹,

Chibnall²,

Guild³

et al. 2013

JAMA Intern Med

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Patient decision‐making modes and causes: A preliminary investigation

Kantor

Bullinger

Gal

2012

J Am Soc Inf Sci Tec

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A recent study of patient decision making regarding acceptance of an implantable cardiac defibrillator (ICD) provides a substantial but nonrandom sample (N = 191) of telephone interviews with persons who have made an affirmative decision regarding an ICD. Using a coding scheme developed through qualitative analysis of transcribed interviews, these data can be subjected to exploratory statistical analysis. The reasons given by respondents for getting the ICD differed by both region and gender, and show some correlations with whether the device has or has not delivered any stimulation (shocks) since implantation. Cluster analysis reveals association among certain important themes in the discussion of the decision process, particularly linking rather opposite concepts into clusters related to specific dimensions. The results suggest the importance, to patients, of maintaining the integrity of the self by asserting control and independence. The majority of the respondents (61%) have not received the primary intended benefit of the device (stimulation). Thus, the findings suggest that psychological benefits alone of having the device (such as anxiety reduction) serve to justify acceptance of a computerized device. Implications for other lines of computerized health support and for further study of these issues are discussed.

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Views of patients with heart failure about their role in the decision to start implantable cardioverter–defibrillator treatment: prescription rather than participation

Abstract: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them.

Cited by 40 publications

References 29 publications

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

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

Patient Perceptions, Physician Communication, and the Implantable Cardioverter-Defibrillator

Patient decision‐making modes and causes: A preliminary investigation

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