Initiated and Funded by
Partner Institutions
Initiated and Funded by
Partner Institutions
Around 60,000 people die in Hong Kong each year, with more than 80% of deaths due to non-acute diseases. Terminal illnesses lead to various challenges for patients and their families, including physical discomfort, psychological stress, family pressures, and emotional issues. The healthcare system primarily focuses on disease treatment, but maintaining quality of life for terminal patients during their remaining time is a significant concern. Additionally, terminal patients spend more time in the community than in hospitals.
To address this, the Hong Kong Jockey Club Charities Trust initiated and funded the “Jockey Club End-of-life Community Care” (JCECC) project in 2016. This project takes an interdisciplinary, evidence-based approach to community end-of-life care, allowing patients to receive professional support in familiar environments, aligning with the vision of providing comfort for both patients and families.
After years of diligent efforts, the project has successfully implemented and established an effective medical-social collaboration community care model for elderly patients. With enhanced community education and increased government focus on end-of-life care, public awareness and acceptance of such care have significantly improved.
Recognizing the unique challenges faced by individuals with physical disabilities, intellectual disabilities, or in mental recovery when dealing with terminal illnesses, the Hong Kong Jockey Club Charities Trust launched and funded a new five-year initiative in 2024, named “Jockey Club End-of-life Community Care: Unison” (JCECC: Unison). This project aims to adapt the current community end-of-life care model designed for the elderly to meet the specific needs and service requirements of this group, ensuring that they and their caregivers receive high-quality community palliative care.
“The joy of life and the serenity of passing — Together, we build a future with choices.” The JCECC Project has consistently embodied this belief. We continue to strengthen the community care network through the innovative model of “medical-social collaboration,” allowing each life to craft its own meaningful narrative within a supportive environment.
Patients with terminal illness and their caregivers face a range of challenges in various situations. These challenges vary in intensity from person to person, and they may confront multiple obstacles at the same time. In general, challenges can be practical aspects such as symptom control, finance concerns, daily life, and caregiving arrangements. They may also involve dealing with emotions, family relationships, and finding social support.
The challenges and needs of patients and caregivers can be quite different. By accurately assessing their needs and providing personalized services, the specific support they require can be offered to them.
According to the World Health Organization (2020), palliative care aims to improve the quality of life of patients and that of their families who are facing challenges related to life-threatening illness. Palliative care can prevent and relieve the pain, along with addressing the physical, psychological, social, and spiritual challenges that caused by illness through early identification, comprehensive assessment, and treatment. It can be initiated early in the progression of the illness and can be provided together with other life-prolonging treatments.
There are different definitions of end-of-life care around the world. In general, end-of-life care refers to the care and support to the patients in their final phases, which can be in the final months or weeks, but for some conditions, this could be months or years (National Institute for Health and Care Excellence, 2019). This includes people with:
Advance care planning is often defined as a process of communication among a patient, his/her healthcare providers, family members or caregivers regarding the end-of-life care when he/she can no longer make a decision (Food and Health Bureau, 2019; Health Bureau, 2020). The person can express values, wishes and preferences for future medical or personal care, or make an advance directive to refuse life-sustaining treatments (LST) (Food and Health Bureau, 2019; Health Bureau, 2020). Advance Care Planning aims to ensure the end-of-life care that is congruent with the wishes of the person and their family (Sudore et al., 2017). In Hong Kong, Advance Care Planning is entirely voluntary.
Advance Medical Directive is a legally blinded document. It allows an adult patient to make instructions in advance for situations where they are mentally incapable of deciding on a life-sustaining treatment (LST), following in-depth discussions with family members and healthcare professionals (Health Bureau, 2024). In the event of the patient’s health deteriorating where patient loses the mental capacity to decide on a LST, healthcare professionals will adhere to the patient’s AMD regarding the withholding or withdrawal of pertinent LSTs, provided that the specified preconditions in the AMD are met. The preconditions include being terminally ill, in a persistent vegetative state or state of irreversible coma, or being in other end-stage, irreversible, life-limiting condition.
The ongoing collaborative efforts by the Hong Kong Jockey Club, The University of Hong Kong, The Chinese University of Hong Kong and NGOs will continue to enhance end-of-life care services to address the physical, psychosocial, spiritual, and practical needs of people with terminal illness and their families.
World Health Organization. (2020, August 5). Palliative care. Retrieved from
https://www.who.int/news-room/fact-sheets/detail/palliative-care
National Institute for Health and Care Excellence. (2019). End of life care for adults: service delivery. Retrieved from
https://www.nice.org.uk/guidance/ng142
Health Bureau. (2020). Consultation Papers: Public Consultation on End-of-life Care: Legislative Proposals on Advance Directives and Dying in Place. Retrieved from
https://www.healthbureau.gov.hk/en/press_and_publications/consultation/190900_eolcare/index.html
Food and Health Bureau. (2019). End-of-life Care: Legislative Proposals on Advance Directives and Dying in Place – Consultation Document. Retrieved from
https://www.healthbureau.gov.hk/download/press_and_publications/consultation/190900_eolcare/e_EOL_care_legisiative_proposals.pdf
Sudore, R. L., Lum, H. D., You, J. J., Hanson, L. C., Meier, D. E., Pantilat, S. Z., Matlock, D. D., Rietjens, J. A. C., Korfage, I. J., Ritchie, C. S., Kutner, J. S., Teno, J. M., Thomas, J., McMahan, R. D., & Heyland, D. K. (2017). Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage, 53(5), 821-832.e821.
https://doi.org/10.1016/j.jpainsymman.2016.12.331
Health Bureau. (2024). Other Publications: Advance Decision on Life-sustaining Treatment Ordinance. Retrieved from
https://www.healthbureau.gov.hk/en/press_and_publications/otherinfo/241100_adlto/index.html
1 Chan, I. K., Fong, C. H., Wong, Y. E., Lou, V. W., & Chan, C. L. (2019). Innovation. Impact: The foundation of community based end-of-life care in Hong Kong. The Jockey Club End-of-Life Community Care Project. Retrieved from http://www.socsc.hku.hk/JCECC/case_book/HKU_SS_JCECC_book.pdf
2 賽馬會安寧頌（2018）。《「心安家寧系列：安寧概念篇》。取自http://www.socsc.hku.hk/JCECC/case_book/ngo_case_b5_o_rev1.pdf
3 Jockey Club End-of-Life Community Care Project. (n.d.). Background and Objectives. Retrieved from https://foss.hku.hk/jcecc/en/about-us/background-and-objectives/
4 Hospital Authority. (2017). Strategic Service Framework for Palliative Care. Retrieved from https://www.ha.org.hk/visitor/ha_view_content.asp?Parent_ID=224128&Content_ID=239624&Ver=HTML
5 Health Bureau. (2024). Other Publications: Advance Decision on Life-sustaining Treatment Ordinance. Retrieved from https://www.healthbureau.gov.hk/en/press_and_publications/otherinfo/241100_adlto/index.html
6 Hospital Authority. (n.d.). Palliative Care Service: About HA’s Palliative Care Services. Retrieved from https://www.ha.org.hk/visitor/ha_visitor_index.asp?Content_ID=10096&Lang=ENG&Dimension=100&Parent_ID=10085&Ver=HTML
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