The Hospice Foundation of Taiwan (HFT) has been established for 34 years. Beginning in its third decade, HFT has organized international conferences to showcase Taiwan's capabilities in hospice care. It has actively supported the promotion of the Patient Right to Autonomy Act, undertaking the training of consultants and ensuring the proper implementation of the law's core principles. Simultaneously, HFT has extended the concept of hospice care into the realm of long-term care, allowing palliative care to flourish not only in hospitals and homes but also within care facilities, where it continues to blossom and bring comfort to those in need.
In alignment with the 2024 theme for World Hospice and Palliative Care Day, set by the Worldwide Hospice Palliative Care Alliance (WHPCA), it is worth reflecting on a 2014 call by the World Health Assembly (WHA) urging nations worldwide to integrate and strengthen palliative care within their healthcare systems. Taiwan, however, began its journey in palliative and hospice care as early as 2000. Throughout this journey, HFT has remained a steadfast partner, starting with advocacy and education, and advancing to support the legislative and policy implementation of related laws. Today, Taiwan continues to progress towards a patient-centered approach that respects medical autonomy and self-determination.
Hosting the APHC for the Second Time: Declaring Taiwan’s Readiness
"The year after the WHA’s global call to action, Taiwan—recognized as one of the leading nations in the Asia-Pacific region for hospice and palliative care development—undertook the significant responsibility of hosting the 11th Asia Pacific Hospice Palliative Care Conference (APHC)," recalled Yi-Yin Lin, the then-CEO of HFT. Reflecting on the impactful year of 2015, Lin highlighted that the conference attracted over 1,315 hospice care professionals from 24 countries. "It not only set a new attendance record in APHC history, but also marked Taiwan as the first country in the Asia-Pacific region to have hosted the APHC twice."
"When the Hospice Foundation of Taiwan submitted its application to host the conference, our aim was to showcase Taiwan’s strength in hospice care and demonstrate our achievements to the international community," Lin recalled. At the time, Taiwan had already achieved significant milestones in areas such as developing clinical hospital wards, coordinated care, and home-based care models; the inclusion of non-cancer terminal illnesses in national health insurance coverage, the successful amendment of the Hospice-Palliative Care Act, the promotion of spiritual care and also of advance care planning. “Through this international conference, we declared not only that Taiwan was ready but that we were also at the forefront of global hospice care development.”
Facilitating the Implementation of the Patient Right to Autonomy Act: Realizing the True Essence of a Dignified End of Life
Following the successful conclusion of the APHC, HFT faced its next challenge: assisting the government in promoting the “Patient Right to Autonomy Act” (PRAA), which was passed in its third reading by the Legislative Yuan on December 18, 2015.
The PRAA is Taiwan’s first patient-centered medical legislation and the first comprehensive law in Asia to fully safeguard patients’ autonomy. It revolutionized the traditional healthcare perspective by prioritizing patients as the central decision-makers, ensuring their rights to informed consent, choice, and decision-making. Unlike previous laws, it applies not only to terminal patients but also extends the right to choose a dignified end-of-life path to individuals with various clinical conditions.
"The PRAA was officially announced by the President in 2016 and took effect in 2019. During the three-year period, HFT undertook numerous responsibilities," explained Yi-Yin Lin. In addition to raising public awareness about the PRAA, HFT convened expert meetings and conducted training sessions to clarify the distinctions between the PRAA and the Hospice Palliative Care Act (HPCA), addressing areas where the overarching law lacked precision. HFT also actively trained instructors to support relevant personnel, ensuring that the PRAA could be effectively implemented and applied in clinical settings.
In just three years, the Hospice Foundation of Taiwan, in collaboration with Taipei City Hospital, launched core instructor workshops and Advance Care Planning (ACP) consultation training courses. This effort helped establish comprehensive consultation teams across all 22 counties and cities in Taiwan. As the first country in the world to implement the Patient Right to Autonomy Act, Yi-Yin Lin acknowledged that the training process was challenging and without precedent. As the official implementation date approached, the pressure on HFT intensified. Fortunately, the results were rewarding, with numerous heartfelt stories emerging from clinical consultations once the PRAA was officially put into practice.
Dr. Ping-Jen Chen, a family medicine specialist at Kaohsiung Medical University Chung-Ho Memorial Hospital, shared one such story: A single mother with cancer brought her two adult children to a consultation session. During the session, the mother expressed her wish to spare her children the emotional burden of making difficult medical decisions on her behalf in the future. She explained that they had discussed these matters extensively at home before coming to the hospital to formalize her Advance Decision (AD).
Even though it was evident that the family had thoroughly considered their decision, the consultation staff carefully explained each medical option covered by the PRAA. When asked whether she would accept Artificial Nutrition and Hydration to extend her life briefly, her children assumed she would decline. However, to their surprise, the mother resolutely accepted the decision, explaining with moving sincerity: “If IV nutrition can help me live a few more months, I’ll have a few more months to spend with my children.”
“This is the kind of love that shines through the consultation process,” Yi-Yin Lin remarked. “The son never expected his typically easygoing mother to willingly endure more pain in her final stages of life, just to spend more time with them.” Lin emphasized that while the legal framework is complex, it depends on the trained teams to guide individuals and their families through meaningful discussions about life, death, and personal values. This, she stated, encapsulates the core spirit of the PRAA.
The Next Decade: Advancing Palliative Care in Long-Term Care
Beyond assisting the government in refining regulations, the Hospice Foundation of Taiwan has long set its sights on the future. As early as 2014, HFT identified a significant and underserved group in need of hospice and palliative care: elderly residents in long-term care facilities, who had been excluded from hospice care services. These individuals were left waiting for the compassionate touch of hospice and palliative care they deserved. In response, HFT proactively engaged with long-term care institutions, hosting seminars and gradually introducing principles of palliative care into this sector. Additionally, It trained long-term care staff to become seeds of palliative care awareness, enabling them to deliver this much-needed care to elderly individuals.
"However, challenges abound in the long-term care setting," explained Yi-Yin Lin. Issues such as a shortage of caregiving staff, established caregiving practices, and a lack of medical support pose significant barriers to implementing hospice care in these facilities. Despite these obstacles, HFT has never considered giving up. Instead, it has sought solutions to empower long-term care institutions that lack the necessary resources. By organizing both online and offline training sessions, HFT hopes to gradually integrate hospice care principles into long-term care practices. In addition to focusing on long-term care facilities, HFT also recognizes the needs of elderly people in rural areas, working tirelessly to assist clinic doctors and nurses to bring palliative care to even the most remote communities.
"This journey is still a long one, but isn’t the hardest part always the beginning?" Yi-Yin Lin remarked. With the government’s decision in June 2022 to officially include terminally frail elderly in the National Health Insurance’s palliative care coverage, Lin is even more optimistic: “Looking back over the past decade, Taiwan has achieved many remarkable milestones in palliative care. As for what we aim to accomplish in the next decade—we have already begun."