Abstract
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.
Highlights
End-of-life (EOL) care, instead of being a standalone type of care, is an integral part of the long-term care that regards the care of the last moment of life
Ethical approval for this study was granted by the Survey and Behavioral Research Ethics Committee of the Chinese University of Hong Kong as well as all the Hospital Authority (HA) Cluster Research Ethics Committees that oversee research studies conducted in the seven hospital clusters in Hong Kong (NTEC/CREC 2015.359; HKEC-2016-18; UW 16-087; KC/KE-16-0030/ER-3; NTWC/CREC/16026; KW/EX-16-096(100-02))
Despite its potential benefits and the updated HA Guidelines on Life-sustaining Treatment in the Terminally Ill published in 2015 which offered an approach for advance care planning (ACP) suitable for the local context [25], we found that ACP was not routinely promoted or universally recognized across all parts of the health and social care system in Hong Kong
Summary
End-of-life (EOL) care, instead of being a standalone type of care, is an integral part of the long-term care that regards the care of the last moment of life. While the quality of life at the end matters for everyone, death and dying have long been and still are taboo subjects that are difficult to be openly discussed in many cultures [1,2,3,4]. It was not until recent years that public engagement and policy interventions with the aims to improve quality of death through provision of high-quality EOL care have gained momentum, as “dying a good death” becomes more discussed and deliberated in the community. Albeit a topic of constant debate, the concept of “a good death” often relates to being. Public Health 2020, 17, 5072; doi:10.3390/ijerph17145072 www.mdpi.com/journal/ijerph
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