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

Holly Standing, Catherine Exley, Darren Flynn, Julian Hughes, Kerry Joyce, Trudie Lobban, Stephen Lord, Daniel Matlock, Janet M Mccomb, Paul Paes, Richard G Thomson

Research output: Book/ReportCommissioned report

Abstract

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
Original languageEnglish
Volume4
Edition32
DOIs
Publication statusPublished - 1 Oct 2016

Publication series

NameHealth Services and Delivery Research
PublisherNIHR Health Technology Assessment Programme
ISSN (Print)2050-4349

Fingerprint

Defibrillators
Terminal Care
Decision Making
Implantable Defibrillators
Cardiac Resynchronization Therapy
Sudden Cardiac Death
Interviews
Shock
Heart Failure
Point-of-Care Systems
Trigger Points
Psychology
Education
Metaphor
Body Image
Information Storage and Retrieval
Health Services Research
National Institutes of Health (U.S.)
Disclosure
Heart Arrest

Cite this

Standing, H., Exley, C., Flynn, D., Hughes, J., Joyce, K., Lobban, T., ... Thomson, R. G. (2016). A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care. (32 ed.) (Health Services and Delivery Research). https://doi.org/10.3310/hsdr04320
Standing, Holly ; Exley, Catherine ; Flynn, Darren ; Hughes, Julian ; Joyce, Kerry ; Lobban, Trudie ; Lord, Stephen ; Matlock, Daniel ; Mccomb, Janet M ; Paes, Paul ; Thomson, Richard G. / A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care. 32 ed. 2016. (Health Services and Delivery Research).
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abstract = "Background:Implantable cardioverter defibrillators (ICDs) are recommended for patients at high risk ofsudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacingfunction to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticatedand can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using apacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiacresynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involvesconsidering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks andpsychological problems) and the potential need for deactivation towards the end of life.Objectives:To explore patients’/relatives’and clinicians’views/experiences of decision-making aboutICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits andconsequences are communicated to patients, to identify individual and organisational facilitatorsand barriers to discussions about implantation and deactivation and to determine information anddecision-support needs for shared decision-making (SDM).Data sources:Observations of clinical encounters, in-depth interviews and interactive group workshopswith clinicians, patients and their relatives.Methods:Observations of consultations with patients being considered for ICD or CRT-D implantationwere 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 intotheir views and experiences. Data collection and analysis occurred concurrently. Interactive workshops withclinicians and patients/relatives were used to validate our findings and to explore how these could be usedto 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 clinicalrationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians usedvarious metaphors, verbal descriptors and numerical risk methods, including variable disclosure of thepotential negative impact of ICDs on body image and the risk of psychological problems, to conveyinformation to patients/relatives. Patients/relatives wanted more information about, and more involvementin, deactivation decisions, and expressed a preference that these decisions be addressed at the time ofimplantation. 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 wasthus contentious; however, trigger points for deactivation discussions embedded within the pathway weresuggested to ensure timely discussions.Limitations:Only two patients who were prospectively considering deactivation and seven bereavedrelatives were recruited. The study also lacks the perspectives of primary care clinicians.Conclusions:There is discordance between patients and clinicians on information requirements, inparticular the potential consequences of implantation on psychological well-being and quality of life in theshort and long term (deactivation). There were no agreed points across the care pathway at which todiscuss deactivation. Codesigned information tools that present balanced information on the benefits, risksand consequences, and SDM skills training for patients/relative and clinicians, would support better SDMabout ICDs.Future work:Multifaceted SDM interventions that focus on skills development for SDM combined withdecision-support tools are warranted, and there is a potential central role for heart failure nurses andphysiologists in supporting and preparing patients/relatives for such discussions.Funding:The National Institute for Health Research Health Services and Delivery Research",
author = "Holly Standing and Catherine Exley and Darren Flynn and Julian Hughes and Kerry Joyce and Trudie Lobban and Stephen Lord and Daniel Matlock and Mccomb, {Janet M} and Paul Paes and Thomson, {Richard G}",
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Standing, H, Exley, C, Flynn, D, Hughes, J, Joyce, K, Lobban, T, Lord, S, Matlock, D, Mccomb, JM, Paes, P & Thomson, RG 2016, A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care. Health Services and Delivery Research, vol. 4, 32 edn. https://doi.org/10.3310/hsdr04320

A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care. / Standing, Holly; Exley, Catherine; Flynn, Darren; Hughes, Julian; Joyce, Kerry; Lobban, Trudie; Lord, Stephen; Matlock, Daniel; Mccomb, Janet M; Paes, Paul; Thomson, Richard G.

32 ed. 2016. (Health Services and Delivery Research).

Research output: Book/ReportCommissioned report

TY - BOOK

T1 - A qualitative study of decision-making about the implantation of cardioverter defibrillators and deactivation during end-of-life care

AU - Standing, Holly

AU - Exley, Catherine

AU - Flynn, Darren

AU - Hughes, Julian

AU - Joyce, Kerry

AU - Lobban, Trudie

AU - Lord, Stephen

AU - Matlock, Daniel

AU - Mccomb, Janet M

AU - Paes, Paul

AU - Thomson, Richard G

PY - 2016/10/1

Y1 - 2016/10/1

N2 - Background:Implantable cardioverter defibrillators (ICDs) are recommended for patients at high risk ofsudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacingfunction to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticatedand can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using apacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiacresynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involvesconsidering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks andpsychological problems) and the potential need for deactivation towards the end of life.Objectives:To explore patients’/relatives’and clinicians’views/experiences of decision-making aboutICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits andconsequences are communicated to patients, to identify individual and organisational facilitatorsand barriers to discussions about implantation and deactivation and to determine information anddecision-support needs for shared decision-making (SDM).Data sources:Observations of clinical encounters, in-depth interviews and interactive group workshopswith clinicians, patients and their relatives.Methods:Observations of consultations with patients being considered for ICD or CRT-D implantationwere 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 intotheir views and experiences. Data collection and analysis occurred concurrently. Interactive workshops withclinicians and patients/relatives were used to validate our findings and to explore how these could be usedto 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 clinicalrationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians usedvarious metaphors, verbal descriptors and numerical risk methods, including variable disclosure of thepotential negative impact of ICDs on body image and the risk of psychological problems, to conveyinformation to patients/relatives. Patients/relatives wanted more information about, and more involvementin, deactivation decisions, and expressed a preference that these decisions be addressed at the time ofimplantation. 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 wasthus contentious; however, trigger points for deactivation discussions embedded within the pathway weresuggested to ensure timely discussions.Limitations:Only two patients who were prospectively considering deactivation and seven bereavedrelatives were recruited. The study also lacks the perspectives of primary care clinicians.Conclusions:There is discordance between patients and clinicians on information requirements, inparticular the potential consequences of implantation on psychological well-being and quality of life in theshort and long term (deactivation). There were no agreed points across the care pathway at which todiscuss deactivation. Codesigned information tools that present balanced information on the benefits, risksand consequences, and SDM skills training for patients/relative and clinicians, would support better SDMabout ICDs.Future work:Multifaceted SDM interventions that focus on skills development for SDM combined withdecision-support tools are warranted, and there is a potential central role for heart failure nurses andphysiologists in supporting and preparing patients/relatives for such discussions.Funding:The National Institute for Health Research Health Services and Delivery Research

AB - Background:Implantable cardioverter defibrillators (ICDs) are recommended for patients at high risk ofsudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacingfunction to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticatedand can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using apacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiacresynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involvesconsidering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks andpsychological problems) and the potential need for deactivation towards the end of life.Objectives:To explore patients’/relatives’and clinicians’views/experiences of decision-making aboutICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits andconsequences are communicated to patients, to identify individual and organisational facilitatorsand barriers to discussions about implantation and deactivation and to determine information anddecision-support needs for shared decision-making (SDM).Data sources:Observations of clinical encounters, in-depth interviews and interactive group workshopswith clinicians, patients and their relatives.Methods:Observations of consultations with patients being considered for ICD or CRT-D implantationwere 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 intotheir views and experiences. Data collection and analysis occurred concurrently. Interactive workshops withclinicians and patients/relatives were used to validate our findings and to explore how these could be usedto 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 clinicalrationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians usedvarious metaphors, verbal descriptors and numerical risk methods, including variable disclosure of thepotential negative impact of ICDs on body image and the risk of psychological problems, to conveyinformation to patients/relatives. Patients/relatives wanted more information about, and more involvementin, deactivation decisions, and expressed a preference that these decisions be addressed at the time ofimplantation. 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 wasthus contentious; however, trigger points for deactivation discussions embedded within the pathway weresuggested to ensure timely discussions.Limitations:Only two patients who were prospectively considering deactivation and seven bereavedrelatives were recruited. The study also lacks the perspectives of primary care clinicians.Conclusions:There is discordance between patients and clinicians on information requirements, inparticular the potential consequences of implantation on psychological well-being and quality of life in theshort and long term (deactivation). There were no agreed points across the care pathway at which todiscuss deactivation. Codesigned information tools that present balanced information on the benefits, risksand consequences, and SDM skills training for patients/relative and clinicians, would support better SDMabout ICDs.Future work:Multifaceted SDM interventions that focus on skills development for SDM combined withdecision-support tools are warranted, and there is a potential central role for heart failure nurses andphysiologists in supporting and preparing patients/relatives for such discussions.Funding:The National Institute for Health Research Health Services and Delivery Research

U2 - 10.3310/hsdr04320

DO - 10.3310/hsdr04320

M3 - Commissioned report

VL - 4

T3 - Health Services and Delivery Research

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

ER -