School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China.
Int J Environ Res Public Health. 2020 Jul 14;17(14):5072. doi: 10.3390/ijerph17145072.
End-of-life (EOL) care for terminal illness and life-limiting conditions is a sector in the health service spectrum that is drawing increased attention. Despite having the world's longest life expectancy and an ever-escalating demand for long-term care, Hong Kong's EOL care was underdeveloped. The current study aims to provide a holistic picture of gaps and issues to EOL care in Hong Kong. Data collection was conducted using a multi-method qualitative approach that included focus groups and in-depth interviews with key informants and stakeholders, and longitudinal case studies with patients and families. Deductive thematic analysis was used to examine service gaps in current EOL care through the lens of a socioecological model where gaps and issues in various nested, hierarchical levels of care as well as the relationships between these levels were studied in detail. Using the model, we identified gaps and issues of EOL care among older populations in Hong Kong at the policy, legal, community, institutional, as well as intrapersonal and interpersonal levels. These include but are not limited to a lack of overarching EOL care policy framework, ambiguity in the legal basis for mental incapacity, legislative barriers for advance directives, inadequate capacity, resources, and support in the community to administer EOL care, inadequate knowledge, training, and resources for EOL care in health and social care sectors, inadequate medical-social interface, general reluctance and fear of death and dying, as well as the cultural interpretation of filial piety that may lengthen the suffering of the dying patients. Findings highlight the multi-level gaps and issues of EOL care in a place where western and eastern culture meet, and shed light on how best to design more effective and comprehensive policy interventions that will likely have a more sustainable and instrumental impact on facilitating person-centered EOL care during the end of life.
终末期疾病和生命有限状况的临终关怀是医疗服务领域中越来越受到关注的一个方面。尽管香港拥有世界上最长的预期寿命和对长期护理的需求不断上升，但临终关怀服务仍不发达。本研究旨在全面了解香港临终关怀服务中的差距和问题。数据收集采用多方法定性方法，包括焦点小组和对关键信息提供者和利益相关者的深入访谈，以及对患者和家庭的纵向案例研究。通过社会生态学模型，使用演绎主题分析来检查当前临终关怀服务中的差距，该模型详细研究了各种嵌套、层次化的护理水平以及这些水平之间的关系中的差距和问题。使用该模型，我们确定了香港老年人群体在政策、法律、社区、机构以及个人和人际关系层面上临终关怀服务的差距和问题。这些问题包括但不限于缺乏全面的临终关怀政策框架、精神能力法律基础的模糊性、预先指示的立法障碍、社区中提供临终关怀的能力、资源和支持不足、卫生和社会保健部门临终关怀知识、培训和资源不足、医疗-社会接口不足、普遍不愿意和对死亡和濒死的恐惧，以及可能延长临终患者痛苦的孝顺的文化解释。研究结果突出了中西方文化交汇的地方临终关怀服务的多层次差距和问题，并阐明了如何设计更有效和全面的政策干预措施，这可能对促进以人为本的临终关怀服务在生命末期产生更可持续和有效的影响。
