Differences in Advance Care Planning between Taiwan and Japan - Deepening the Person-Centered Conversation Process

With the enactment of the Patient Right to Autonomy Act in 2019, Advance Care Planning became a legal procedure for validating Advance Decision. However, in comparison to Taiwan, where the consultation tends to focus on achieving a good death, Japan, having long entered a super-aging society, places more emphasis on the conversational process.

How do you decide to navigate the final stretch of your life when faced with physical incapacity or even unconsciousness? Would you choose to be intubated, relying on life-sustaining equipment to sustain your incapacitated body, proceeding towards the end of life in an awkward manner? Alternatively, do you opt to preserve your last shreds of dignity, disconnect life-sustaining equipment, and maintain the integrity of your body for a dignified death?

With the enactment of the Patient Right to Autonomy Act (PRAA) in 2019, a person now has the ability to make this decision in advance by signing an Advance Decision (AD). However, the AD only takes effect after you have undergone an Advance Care Planning (ACP) session with your healthcare provider, giving ACP a unique legal status and making it a prominent topic in hospice care.

Advance Care Planning: A Willingness to End Well

Attorney Sam-Rong Hwang, holding a master's degree in law from Nagoya University in Japan, has been actively involved in researching the PRAA. In early 2018, he initiated participation in the Rotary International Global Grants Program, fostering a connection between Rotary Club Taipei-Tienmu and the Taiwan Society of Home Health Care. He organized a team comprising medical doctors, nurse practitioners, psychologists, and other professionals to visit Japan for a seminar, exchanging experiences with the Japan Home Health Care Alliance. Upon returning to Taiwan, he recognized the necessity to further delve into related healthcare issues. Following the same pattern in 2020, he revisited Japan with a team of healthcare professionals from the Hospice Foundation of Taiwan for additional exchanges on ACP and hospice and palliative care.

After returning home, the participants of the seminar believed that they could further enhance exchanges by inviting Japanese experts and scholars to Taiwan. However, their plans were hindered by the COVID-19 pandemic, and it was not until May 2023 that they finally succeeded in inviting several Japanese doctors, professors, and other professionals to Taiwan for in-person and online exchanges. These three seminar exchanges sparked different insights and practices in ACP between Taiwan and Japan.

According to Article 3, Paragraph 6 of the PRAA, ACP is defined as the process of communication between a patient and healthcare providers, relatives, or other relevant individuals. This communication aims to discuss the appropriate care that should be provided to the patient in specific clinical conditions, when the patient is in a coma, or is unable to clearly express their wishes. It also involves addressing decisions about life-sustaining treatments, artificial nutrition, and fluid feeding, which the patient is allowed to accept or refuse.

Under this provision, individuals seeking consultation must engage with healthcare providers (i.e., doctors, nursing staff, social workers), at least one relative within the second degree of consanguinity, and the appointed medical surrogate agent (if applicable). The purpose of the consultation is to make advance decisions regarding the acceptance or refusal of life-sustaining treatment, artificial nutrition, and fluid feeding. This is particularly relevant when the individual is at the end of life, in an irreversible coma, in a permanent vegetative state, experiencing profound dementia, or in any other case of a serious illness designated by the government.

The consultation results are documented after the individual signs an AD. The hospital assists in scanning and uploading these results to the Ministry of Health and Welfare's database. Furthermore, the information is recorded on the individual's health insurance card.

The AD, similar to the Advance Hospice Palliative Care & Life-Sustaining Treatment Choices of Intent (or DNR – Do Not Resuscitate) under the Hospice Palliative Care Act, provides a means to proactively reject excessive medical treatment, ensuring that patients can experience a good death. However, the scope of the AD is broader, encompassing a wider range of diseases and offering more options for refusing or accepting various medical treatments.

Person-Centered Approach Toward the End of Life

According to Sam-Rong Hwang, Japan does not have a specific law like the PRAA, and there is no mandatory requirement for ACP. Japan places a stronger emphasis on the conversation process, aiming to improve family relationships and doctor-patient relationships through dialogue.

For instance, Elder A may have initially opted to decline life-sustaining treatments, but upon learning that A’s grandchild is about to be born, A decides to undergo life-sustaining treatments to witness A’s grandson's arrival for the first and last time.

On the other hand, Elder B may have initially chosen to receive life-sustaining treatments to prolong life, but towards the end of life, B embraced certain religious beliefs, leading to a change of heart, and decides to decline life-sustaining treatments in the hope of maintaining an intact body while aspiring to achieve a good death.

In Taiwan, under the PRAA, the content of an AD can be altered even after signing. However, the primary emphasis of the promotion is to educate the public on choosing what is known as a good death. Due to the existence of this dedicated law, healthcare professionals involved often lean towards strict adherence to legal requirements, guiding the public to opt for the so-called good death. This, in turn, indirectly influences public thought processes, imposing values on them, and suggesting that a good death is the outcome of both ACP and AD.

Sam-Rong Hwang holds a different perspective. Comparing the varying mindsets of the governments and people in the two countries, he believes that, despite Japan lacking a specialized law like the PRAA and only having administrative guidelines for the Life Meeting formulated by the Ministry of Health, Labour and Welfare, there is an expectation that the Japanese people might be less constrained by legal frameworks, placing greater emphasis on the conversational process. According to Sam-Rong Hwang, the Japanese system may prioritize person-centered practices to a greater extent.

Upon further exploration, what constitutes a good death? For the Taiwanese, it appears that a good death entails a peaceful and dignified passing, preserving the integrity of the body—a concept of leaving the body intact. Therefore, encountering life-sustaining medical treatments that inevitably lead to intubation, tracheotomy, or electrocution, causing more or less damage to the body, is not considered a good death. Consequently, in pursuit of a good death, Taiwanese individuals opt to refuse life-sustaining medical treatments during the ACP process. To a certain extent, this aligns with the government's expectations to avoid wasting medical resources and to shield healthcare workers from potential legal disputes.

However, this perspective may not be universal among the Japanese people. Approximately 10 years ago, there were voices in Japanese society to legislate for a dignified death, but it quickly faced a wave of opposition. Various groups, including those representing mentally and physically challenged individuals, rare disease groups, lawyer groups, and even doctor groups, distanced themselves from legislation on dignified death. This might be because Japanese people believe that life is not a simple decision and that more thorough discussions should take place before determining whether or not to embrace a dignified death. This reflects the cautious approach of the Japanese people in exploring the nuanced nature of human existence on this issue, rather than making a hasty and simplistic decision on the concept of a good death.

Three Exchanges Nurturing Growth

In 2018, 2020, and 2023, Sam-Rong Hwang participated in three exchanges between Taiwan and Japan focused on home medical care, ACP, and hospice and palliative care. Each exchange had a distinct impact. He noted that during the first exchange, discussions were primarily between Taiwan and Japan's residential healthcare professionals, with limited emphasis on ACP and hospice and palliative care—topics only briefly touched upon. However, the last two exchanges delved more profoundly into these subjects.

In 2020, a team of 24 physicians, nurse practitioners, and psychologists from the Hospice Foundation of Taiwan, including Director Chun-Kai Fang, CEO Yi-Yin Lin, and Attorney Sam-Rong Hwang, embarked on a fruitful academic exchange in Japan. Following the team's return to Taiwan, two ACP seminars were conducted in July and August at Tamsui MacKay Memorial Hospital. These seminars compared the legal systems, ethical concepts, and practical healthcare issues between Taiwan and Japan. The seminars provided Taiwan's healthcare professionals with an opportunity to reevaluate the status of ACP and related matters.

In 2023, through collaboration with the Taiwan Academy of Hospice Palliative Medicine, Japanese experts and scholars were invited to Taiwan for a combined online and in-person seminar. The event featured eight Japanese doctors and professors participating either in person or online. This seminar took place after the fourth anniversary of the implementation of Taiwan's PRAA, providing a wealth of clinical cases for discussion in Taiwan. The cultural differences between Taiwan and Japan provided ample opportunities for Taiwanese healthcare professionals to engage in thoughtful discussions on ACP and hospice and palliative care.

Sam-Rong Hwang is pleased to witness healthcare professionals in Taiwan contemplating the system from different perspectives. He sees these considerations as seeds that will sprout and grow in the future. In the ongoing promotion of ACP and AD signing, he hopes to contribute diverse opinions and foster discussions on this topic within society. This way, healthcare professionals and others can reflect more on person-centered practices.

Sam-Rong Hwang couldn't speak on behalf of the Japanese experts, but he observed their surprise upon learning about the completion of Taiwan's PRAA legislation. The surprise could stem from various aspects, such as amazement at Taiwan's society reaching a consensus on values and successfully legislating. They might be astonished that Taiwan achieved legislation where the state guides people's values. Another possibility is that they found it surprising that the people of Taiwan completed legislation quickly without thoroughly contemplating this aspect of the issue beforehand.

Living a Good Life Is All About People

Sam-Rong Hwang envisions the future direction of ACP with a focus on two key perspectives. Firstly, From Act to Person-centered, highlighting the shift from merely emphasizing legal frameworks to placing a greater emphasis on person-centered approaches. Secondly, From AD to ACP, emphasizing the transition from concentrating solely on the signing of the AD to prioritizing the implementation of ACP.

Additionally, From Outcome to Process emphasizes not only the result of the decision but also the importance of dialogue and discussion, in which the system should refocus on the individual. And From Hospital to Home involves not only an institution-based approach but also underscores the role of home healthcare and home-based healthcare in advancing ACP.

Moreover, it is important to adopt a broader perspective. From Healthcare to Total Domains involves not only focusing on healthcare but also considering life comprehensively, including financial and life planning, referred to as Advance Total Planning (ATP). Lastly, returning to the core of the ACP system, From Good Death to Good Life means not only prioritizing the pursuit of a good death but also placing importance on living fully and living well, providing an opportunity for a good death.