van der Steen Jenny T, Lemos Dekker Natashe, Gijsberts Marie-José H E, Vermeulen Laura H, Mahler Margje M, The B Anne-Mei
Department of Public Health and Primary Care, Leiden University Medical Center, Hippocratespad 21, Gebouw 3, P.O. Box 9600, 2300 RC, Leiden, The Netherlands.
Department of Primary and Community Care (117 ELG), Radboud university medical center, Geert Grooteplein Noord 21, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
BMC Palliat Care. 2017 Apr 28;16(1):28. doi: 10.1186/s12904-017-0201-4.
When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.
In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.
(1) The EAPC domain of "avoiding overly aggressive, burdensome, or futile treatment" was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.
A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.
进入临终阶段后，痴呆症患者及其家人在身体、心理社会和精神护理方面的需求性质可能会发生变化。我们的目标是在证据基础有限的情况下，了解为临终阶段制定最佳姑息治疗服务需要具备哪些条件。
2015年至2016年，我们开展了一项混合方法的定性研究，其中我们（1）分析了欧洲姑息治疗协会（EAPC）痴呆症白皮书的领域和建议，并确定了与临终阶段特别相关的内容；（2）与处于不同阶段的痴呆症患者的荷兰家庭护理人员进行了一系列焦点小组讨论；（3）对五个国家参与15种痴呆症患者特殊临终护理形式的专家进行了访谈。临终阶段被定义为濒死期，但由于难以预测，我们纳入了重度痴呆症患者。我们最初分别分析了这三个部分，随后对（1）至（3）进行综合分析以为服务发展提供信息。
（1）EAPC的“避免过度积极、繁重或无效的治疗”领域在临终阶段被认为特别相关，还有一些关于提供舒适护理的建议。（2）家庭更喜欢护理和生活安排的连续性。尽管他们认识到这是一个他们有复杂支持需求的时期，但他们发现很难接受一大群不熟悉的（专业）护理人员的介入。大多数情况下，他们更喜欢在住所接受临终护理。（3）专家访谈确定了首选的成功模式，即一个训练有素的团队的代表有时间、权力和必要的专业知识，在患者所在之处为工作人员和家庭提供护理和教育，并确保与患者及其周围人的关系的连续性。
一个专门从事痴呆症姑息治疗并支持专业和家庭护理人员的流动团队是一个有前景的模式。与在最后几周或几天转至临终关怀机构相比，它有可能满足家庭和患者对护理连续性、关系和专业知识的优先需求。
