“It’s Like Crossing a Bridge” Complexities Preventing Physicians from Discussing Deactivation of Implantable Defibrillators at the End of Life

Goldstein, Nathan E.; Mehta, Davendra; Teitelbaum, Ezra N.; Bradley, Elizabeth H.; Morrison, R. Sean

doi:10.1007/s11606-007-0237-x

Cited by 106 publications

(95 citation statements)

References 36 publications

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“…Consistent with previous research, 15,16,24,54 several patients in our study held erroneous beliefs about the benefit of ICD therapy and seemed unaware of the adverse effects of ICDs and the potential threats to quality of life, such as the risk of psychological problems, driving restrictions and a negative impact on body image.…”

Section: Discussionsupporting

confidence: 86%

“…Congruent with previous research, 11,24 we identified a reticence among clinicians about raising the issue of deactivation with patients and relatives (especially pre implantation), including a lack of consensus on who should initiate discussions about deactivation and their timing across the pathway. In previous research, 6,13,14,53 many patients and relatives reported not being informed about deactivation until a patient was nearing the end of life, when early discussion (pre implantation) would have been their preference.…”

Section: Discussionmentioning

confidence: 69%

“…11,14 Reasons for clinicians failing to initiate deactivation conversations were: a lack of knowledge about ICD function; poor quality doctor-patient relationships; the assumption that responsibility for discussing deactivation lies elsewhere; erroneous beliefs that patients are already aware that the device can be deactivated; and the belief that clinicians can accurately predict which patients will experience shock (and distress) towards the end of life. 11,24 This research suggests a level of unease around initiating deactivation discussions.…”

Section: Structure Of the Reportmentioning

confidence: 84%

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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: Discussionsupporting

confidence: 86%

Section: Discussionmentioning

confidence: 69%

Section: Structure Of the Reportmentioning

confidence: 84%

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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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“…34,35 When discrepancies occurred, the researchers re-read or re-listened to the interview and discussed the content and interpretation until they reached consensus. 36 The resulting extended checklists were used for the subsequent interview. In accordance with this iterative process, each new interviewee was read aloud more comprehensive checklists, with the exception of the last three respondents whose interviews did not yield new information.…”

Section: Methodsmentioning

confidence: 99%

Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer

Hazewinkel¹,

Sprangers

Taminiau-Bloem

et al. 2009

BJOG

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Objective (1) To explore the reasons for not seeking help for severe pelvic floor symptoms after gynaecological cancer treatment. (2) To determine the willingness to undergo treatment for these symptoms. (3) To invite suggestions to improve outpatient care.Design Qualitative study using semistructured interviews.Setting Vulvar, endometrial or cervical cancer survivors treated in the Academic Medical Centre, Amsterdam, the Netherlands between1997 and 2007.Population Purposively selected sample from 138 eligible respondents to pelvic floor-related questionnaires, who were severely bothered by their symptoms (>75th percentile of domain sum score of questionnaires) and had not sought medical help.Methods After each semistructured interview, a checklist with reasons for not seeking help was complemented with newly mentioned reasons. The interviews were stopped when data saturation was accomplished, i.e. three consecutive interviewees had not revealed new reasons. The interviews were analysed by two researchers independently.Main outcome measure Help-seeking behaviour for bothersome pelvic floor symptoms.Results Fifteen interviews were conducted. Most reported reasons for not seeking help were that women found their symptoms bearable in the light of their cancer diagnosis and lacked knowledge about possible treatments. Seven women were willing to undergo treatment. Eleven women stated that care should be improved, specifically by timely referral to pelvic floor specialists and additional care by oncology nurses.Conclusions There is a need for standardised attention to adverse effects on pelvic floor function after cancer treatment. This could be realised by quantifying symptoms using questionnaires, standardised attention for such symptoms by gynaecological oncologists or oncology nurses, and timely referral to pelvic floor specialists of women with bothersome pelvic floor symptoms.Keywords Cancer survivors, help-seeking behaviour, pelvic floor symptoms, post-treatment care, qualitative methods.Please cite this paper as: Hazewinkel M, Sprangers M, Taminiau-Bloem E, van der Velden J, Burger M, Roovers J. Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer.

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“…As the population ages and the indications for implantable cardioverter-defibrillator (ICD) therapy and other cardiac implantable electronic devices (CIEDs) increase (Table 6), [166][167][168][169][170][171] the numbers of patients entering SNFs with these devices will grow. Identification of the presence of a CIED is the first step in management.…”

Section: Management Of Cardiac Implantable Electronic Devices In Hf Pmentioning

confidence: 99%

Heart Failure Management in Skilled Nursing Facilities

Jurgens¹,

Goodlin²,

Dolansky³

et al. 2015

Circ: Heart Failure

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655H eart failure (HF) is a complex syndrome in which structural or functional cardiac abnormalities impair the filling of ventricles or left ventricular ejection of blood. HF disproportionately occurs in those ≥65 years of age.1 Among the estimated 1.5 to 2 million residents in skilled nursing facilities (SNFs) in the United States, cardiovascular disease is the largest diagnostic category, and HF is common. 2,3Despite the high prevalence of HF in SNF residents, none of the large randomized clinical trials of HF therapy included SNF residents, and very few included patients >80 years of age with complex comorbidities.Several issues make it important to address HF care in SNFs. The healthcare environment and characteristics of SNF residents are distinct from those of community-dwelling adults. Comorbid illness unrelated to HF (eg, dementia, hip fracture) increases with age >75 years, and these conditions may complicate both the initial HF diagnosis and ongoing management. [4][5][6] Morbidity and mortality rates are significantly increased for hospitalized older adults with HF discharged to SNFs compared with those discharged to other sites. 7Transitions between hospitals and SNFs may be problematic. 8SNF 30-day rehospitalization rates for HF range from 27% to 43%, 7,9,10 and long-term care residents sent to the emergency department are at increased risk for hospital admission and death.11 The purpose of this scientific statement is to provide guidance for management of HF in SNFs to improve patientcentered outcomes and reduce hospitalizations. This statement addresses unique issues of SNF care and adapts HF guidelines and other recommendations to this setting. MethodsThis scientific statement on HF management in SNFs was developed by a writing group of experts representing nursing, medicine (cardiology, geriatrics, nursing home physicians, and palliative medicine), pharmacology, physical therapy, dietary clinical management, research, and quality of care. Sponsors (the American Heart Association [AHA] and the Heart Failure Society of America) identified specific members of the writing group, and others were selected on the basis of known expertise. A literature search was performed using the key The current document is solely the responsibility of the authors and does not represent the official views of the National Heart, Lung, and Blood Institute or the Department of Health and Human Services.The American Heart Association and the Heart Failure Society of America make every effort to avoid any actual or potential conflicts of interest that may arise as a result of an outside relationship or a personal, professional, or business interest of a member of the writing panel. Specifically, all members of the writing group are required to complete and submit a Disclosure Questionnaire showing all such relationships that might be perceived as real or potential conflicts of interest.This document was approved by the American Heart Association Science Advisory and Coordinating Committee on September 15, 2014, and by the...

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“It’s Like Crossing a Bridge” Complexities Preventing Physicians from Discussing Deactivation of Implantable Defibrillators at the End of Life

Cited by 106 publications

References 36 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

Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer

Heart Failure Management in Skilled Nursing Facilities

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