Ariel University, Israel; Max Stern Yezreel Valley College, Israel.
Max Stern Yezreel Valley College, Israel.
Nurs Ethics. 2021 Nov-Dec;28(7-8):1228-1243. doi: 10.1177/0969733021999748. Epub 2021 Jun 11.
In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient's decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care.
Exploring and describing differences and similarities of professional staff members' (PSMs') and family caregivers' perceptions of caring for people with end-stage dementia in two different settings.
Qualitative research, using semi-structured interviews analyzed through a thematic content-analysis approach.
Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings-home hospice unit and home care unit.
The study was approved by the Ethics Committee (BBL00118-17).
We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing "comfort" over "life-prolonging," clarifying patients' wishes and deciding whether or not to use artificial feeding.
Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants' perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care.
Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.
在以色列，照顾居家的终末期痴呆患者主要由家庭护理单位负责，在某些情况下则由家庭临终关怀单位提供替代的姑息治疗服务。由于预期寿命相对未知，且患者的决策能力较差，因此在为这一独特人群提供护理时，会出现何时将疾病定义为终末期以及在姑息治疗和延长生命治疗之间进行选择等伦理难题。
探索和描述两种不同环境下专业人员（PSM）和家庭照顾者对照顾终末期痴呆患者的看法的异同。
使用半结构化访谈进行的定性研究，并通过主题内容分析方法进行分析。
在两个护理环境-家庭临终关怀单位和家庭护理单位中，共进行了 64 次访谈（24 名 PSM 和 40 名家庭照顾者）。
该研究得到了伦理委员会（BBL00118-17）的批准。
我们发现姑息治疗的困境是主要主题，包括将疾病定义为终末期、选择“舒适”而非“延长生命”、澄清患者的意愿以及决定是否使用人工喂养。
PSM 和家庭照顾者都面临着伦理困境，并得出了不同的结论，两者都是合理的。将痴呆症理解为一种终末期疾病，影响了参与者对终末期痴呆患者姑息治疗相关性的看法。在家庭临终关怀单位和家庭护理单位环境中，都发现了 PSM 和家庭照顾者在照顾终末期痴呆患者方面的差异，这可能导致对临终关怀决策产生潜在冲突。
PSM 和家庭照顾者之间的沟通对于讨论照顾终末期痴呆患者的独特困境以及弥合两者之间的差距至关重要。沟通和资源的缺乏可能会阻碍为人们提供可接受的解决方案，从而无法在最佳利益的基础上为终末期痴呆患者提供优质和平等的护理。
