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

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