Stoevelaar Rik, Stoppelenburg Arianne, van Bruchem-Visser Rozemarijn L, van Driel Anne Geert, Theuns Dominic Amj, Lokker Martine E, Bhagwandien Rohit E, Heide Agnes van der, Rietjens Judith Ac
Department of Public Health, Erasmus MC, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands.
Department of Internal Medicine, Erasmus MC, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands.
Palliat Med. 2021 May;35(5):904-915. doi: 10.1177/02692163211001288. Epub 2021 Apr 13.
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.
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.
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.
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, = 0.012).
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.
对于植入式心脏复律除颤器患者生命的最后阶段以及该人群的预先护理计划实践，人们了解甚少。
描述植入式心脏复律除颤器患者生命的最后阶段及预先护理计划过程，并评估亲属对治疗和护理的满意度。
混合方法研究，包括一项调查和焦点小组研究。
设置/参与者：对170名亲属进行了一项调查（回复率为59%），这些亲属报告了154名已故患者的情况，并随后与23名亲属进行了5次焦点小组讨论。
亲属报告称，38%的患者与医疗保健专业人员就植入式心脏复律除颤器停用问题进行了交谈。患者和亲属对设备功能缺乏了解以及医疗保健专业人员认为时间不足，是预先护理计划中经常提到的障碍。24%的患者在生命的最后一个月经历了电击，据亲属称，74%的患者和73%的亲属对此感到痛苦。42%至61%的亲属报告对临终护理的不同方面感到满意，比如患者的意愿得到尊重的方式。设备停用的患者的死亡质量评分高于设备启用的患者（10分制中分别为6.74分和5.67分，P = 0.012）。
只有少数患者讨论了植入式心脏复律除颤器的停用问题。据报告，电击会让患者和亲属感到痛苦。与设备启用患者的亲属相比，设备停用患者的亲属报告的死亡质量更高。
