The "unspoken" ethical challenges behind Implantable Cardioverter Defibrillator deactivation

Introduction: A 66 year old lady, called “Brenda” suffered ST elevation myocardial infarction 2012 with severe left ventricular dysfunction. Cardiac Resynchronisation therapy and ICD (CRT-D) was implanted following a cardiac arrest, with little opportunity for education on device functionality. Brenda remained highly symptomatic with NYHA III heart failure (HF) symptoms and stage 3 renal impairment, necessitating frequent hospitalisations. She was declined cardiac transplantation because of her weight (BMI 42). Problem and solution: Brenda described herself as a “burden” due to diminished mobility and increased physical and emotional reliance on family and healthcare professionals. Aware of treatment limitations and current palliative intent, Brenda’s coping strategy was to avoid discussing prognosis or future plans. Ethically “truth telling” within healthcare is an absolute right, however literature asserts many HF patients exhibit denial, wanting to maintain optimism and listen to only “desirable” parts of the truth. Brenda’s family were kept updated and believed she should be “protected” from distressing information. The clinical team bound by professional codes, provided care considered as in her ‘best interests’. Brenda was assessed at every opportunity for an indication of readiness to discuss end-of-life issues including deactivation. Unfortunately she was re-admitted with decompensated HF and one shock, her condition deemed irreversible. Deactivation was discussed with her family, the device was deactivated and Brenda died in ICU a few days later. Practical challenges: Brenda held unrealistic expectations of the therapeutic value of the ICD at the end-of-life, as a result of her limited knowledge. Guidelines recommend patients are informed about deactivation, however the optimal time to introduce discussions remains uncertain. Earlier open and honest dialogues between Brenda and the clinical team may have facilitated development of a more adaptive coping mechanism. Family involvement in such discussions would have improved their understanding of Brenda’s wishes and provision of greater support. The consequences of Brenda’s decision to keep her device active resulted in her death in ICU rather than peacefully at home. Conclusion & Implications for clinical practice: Pre-implantation advice regarding deactivation is contentious in practice despite guideline recommendations. Patients have unique information needs and coping styles which may be counter-intuitive to ‘truth-telling’. Patient autonomy and shared decision-making at the end-of-life regarding the status of the device should be promoted.