Minerva Center for Interdisciplinary Study of End of Life, Tel-Aviv University, Tel Aviv, Israel.
Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel.
PLoS One. 2020 Sep 25;15(9):e0239423. doi: 10.1371/journal.pone.0239423. eCollection 2020.
We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.
In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care.
In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL.
Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.
我们研究了在未来患有晚期痴呆症或身体残疾的情况下,照顾过临终亲属的照顾者希望如何得到照顾,以及哪些因素影响了他们对临终关怀的偏好。
在这项混合方法研究中,我们从以色列的多个来源招募了 83 名参与者,对其社会人口统计学因素、健康状况、临终关怀经验、延长生命与提高生活质量(QoL)的偏好、依赖他人的意愿以及临终关怀偏好进行了访谈。
在患有晚期痴呆症的情况下,有 58%的人选择安乐死或自杀;约有三分之一的人选择安乐死或自杀来治疗身体残疾。在晚期痴呆症情况下,家庭成员的护理是最不受欢迎的护理形式,尽管在身体残疾情况下比机构护理更受欢迎。QoL 是影响临终关怀偏好的最重要因素。男性比女性更倾向于延长生命而不是提高 QoL。
我们的研究表明,社会需要考虑满足参与者拒绝其亲属所经历的临终关怀类型的需求。这些解决方案包括投资改善临终生命质量,并提供替代方案,如安乐死,我们的大部分参与者认为,在严重身体残疾的情况下,以及在患有晚期痴呆症的情况下,这种替代方案在当前的护理系统中具有伦理和医学上的合理性。