Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives

Abstract

Background: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. Aim: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives’ satisfaction with treatment and care. Design: Mixed-methods study, including a survey and focus group study. Setting/participants: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. Results: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients’ and relatives’ lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). Conclusions: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

The Effectiveness of Video Decision Aid on Advance Care Planning With Adult Patients

“…The guideline states that health care providers should discuss ACP with patients and relatives in a timely and frequent manner throughout the disease trajectory 28 . However, ACP is still in its infancy in many countries 29 .…”

“…The guideline states that health care providers should discuss ACP with patients and relatives in a timely and frequent manner throughout the disease trajectory. 28 However, ACP is still in its infancy in many countries. 29 Video decision aids have mostly been developed and applied by countries and regions with better death education.…”

Expanding the Paradigm for Cardiovascular Palliative Care

“…55 Family members of deceased patients with ICDs report that shocks caused pain, fear, stress, and sadness for both patient and family members at the end of life, and in one study, they rated their relative’s quality of death higher when their ICD was deactivated. 56…”

“…55 Family members of deceased patients with ICDs report that shocks caused pain, fear, stress, and sadness for both patient and family members at the end of life, and in one study, they rated their relative's quality of death higher when their ICD was deactivated. 56 From a technical perspective, ICD deactivation may include turning off antitachycardia pacing therapy, shocks, or both; additional programming changes might include restricting the number of ICD shocks or changing the detection parameters for treatment. (We address pacing therapy separately later in this article.)…”