"The communication I had with him back then is still stuck in my mind." Bereaved families of cancer patients' experiences for end-of-life communication.

PURPOSE: Communication with family members is important to end-of-life care for patients with cancer. It is an interactive engagement between terminally-ill cancer patients and their families through which they expand their mutual understanding to cope with losses and find meaning in death. This study aimed to describe the experiences of end-of-life communication between patients with cancer and their family members in South Korea. METHODS: This is a qualitative descriptive study using in-depth semi-structured interviews. Ten bereaved family members with end-of-life communication experience with terminal cancer patients were recruited through purposive sampling. Data were analyzed using qualitative content analysis. RESULTS: A total of 29 constructed meanings, 11 sub-categories, and the following 3 categories were derived: "Offering a space for patients to reminisce and reflect," "Building a bond," and "Reflections on what we need." End-of-life communication primarily centered on the patients, with families struggling to share their stories with them. Although the families coped well, they also regretted the lack of meaningful communication with the patients, indicating a need for support to facilitate effective end-of-life communication. CONCLUSION: The study highlighted concrete communication for finding meaning at the end-of-life for cancer patients and their families. We found that the families have the potential to communicate appropriately to cope with the patients' end-of-life. Nevertheless, end-of-life presents a unique challenge in which families require adequate support. Given the increasing number of patients and families dealing with end-of-life care in hospitals, healthcare providers should be mindful of their needs and help them cope effectively.

Forgoing life-sustaining treatment - a comparative analysis of regulations in Japan, Korea, Taiwan, and England.

BACKGROUND: Regulations on forgoing life-sustaining treatment (LST) have developed in Asian countries including Japan, Korea and Taiwan. However, other countries are relatively unaware of these due to the language barrier. This article aims to describe and compare the relevant regulatory frameworks, using the (more familiar) situation in England as a point of reference. We undertook literature reviews to ascertain the legal and regulatory positions on forgoing LST in Japan, Korea, Taiwan, and England. MAIN TEXT: Findings from a literature review are first presented to describe the development of the regulatory frameworks surrounding the option of forgoing LST in each country. Based on the findings from the four countries, we suggest five ethically important points, reflection on which should help to inform the further development of regulatory frameworks concerning end-of-life care in these countries and beyond. There should be reflection on: (1) the definition of - and reasons for defining - the 'terminal stage' and associated criteria for making such judgements; Korea and Taiwan limit forgoing LST to patients in this stage, but there are risks associated with defining this too narrowly or broadly; (2) foregoing LST for patients who are not in this stage, as is allowed in Japan and England, because here too there are areas of controversy, including (in England) whether the law in this area does enough to respect the autonomy of (now) incapacitated patients; (3) whether 'foregoing' LST should encompass withholding and withdrawing treatment; this is also an ethically disputed area, particularly in the Asian countries we examine; (4) the family's role in end-of-life decision-making, particularly as, compared with England, the three Asian countries traditionally place a greater emphasis on families and communities than on individuals; and (5) decision-making with and for those incapacitated patients who lack families, surrogate decision-makers or ADs. CONCLUSION: Comparison of, and reflection on, the different legal positions that obtain in Japan, Korea, Taiwan, and England should prove informative and we particularly invite reflection on five areas, in the hope the ensuing discussions will help to establish better end-of-life regulatory frameworks in these countries and elsewhere.

Characteristics of Life-Sustaining Treatment Decisions: National Data Analysis in South Korea.

This study analyzed the national data on life-sustaining treatment decisions from 2018 to 2020 to find out the characteristics of South Korea's end-of-life procedure according to the decision-making approach and process. We collected the data of 84,422 patients registered with the National Agency for Management of Life-sustaining Treatment. We divided the patients into four groups (G1, G2, G3, and G4) according to the decision-making approach. A descriptive analysis of each group was conducted using indicators such as the patient's age, status, diagnosis, and content of forgoing life-sustaining treatment. Additionally, logistic regression analysis was performed by dividing the patients into self-determining (G1, G2) and non-self-determining patients (G3, G4). Cancer was the most common diagnosis for each group. The period from life-sustaining treatment decision to implementation was 10.76, 1.01, 0.86, and 1.19 days for G1, G2, G3, and G4, respectively. In the logistic regression analysis, the self-determination ratio was higher for 40-49 years old and lower for cardiovascular disease and gastrointestinal disease. Age was has a major impact on life-sustaining treatment decisions (LSTD), and with increase in age, the family, and not the patient, made the LSTD. The LSTD method also differed depending on the disease. The self-determination rates of patients with circulatory or digestive diseases were somewhat lower than that of those with neoplastic diseases. The period from decision-making to implementation is short for end-of-life care.

Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.

Background: The National Project of Bio-Big Data (NPBBD) is a South Korean bio-big data collection project, expected to include health, genomic, and lifelog data of one million Koreans. The Ethical, Legal, and Social Implications study is a parallel study active since 2020. As part of the study, a public survey was conducted to evaluate public attitudes towards engagement schemes, such as public committees and web portals for communication between the public and researchers. Methods: An online survey was conducted from March 3-9, 2021, using structured questionnaires addressed to 1,000 adults aged 20-59 years. Results: Several respondents reported a positive attitude towards participation (43.6% "somewhat," 14.3% "definitely"), whereas approximately one-third (36.5%) reported a neutral attitude. Positive factors that may affect the willingness of the respondents to participate included receiving health information (25.1%), contributing to research on cancer and rare diseases (21.9%), and advancing personalized medicine (21.5%). Conversely, negative factors were mainly associated with concerns regarding the risk of data leakage (22.8%), discrimination (21.1%), lack of information (13.5%), possibility of knowing the risk of being diagnosed with an incurable diseases (12.5%), and possibility of using data in industry (11.3%). In terms of project governance, respondents tended to recognize the importance of public participation in incorporating public opinion into the project design. Conclusion: These results have implications for the participant recruitment process, public engagement strategies, and the scope of user (academics/industry, domestic/overseas) accessibility to the database.

Biomedical ethics policy in Korea: characteristics and historical development.

Ethical consideration is an inseparable part of policy-making in modern society. Biomedical ethics is an interdisciplinary study of ethical issues that result from advances in medical practices and research. Because these issues often arise at the bedside, society must provide solutions or judgments that are effective and applicable. Thus, the development and progress of biomedical ethics has been made possible via the cooperation of experts from diverse backgrounds. The biomedical ethics discourse should not be seen as a conflict between values but as a collective activity for problem-solving. To support this perspective on ethics discourse, a historical perspective on biomedical ethics in Korea was given emphasis on the participants and their perspectives. Major cases and the changes resulting therefrom were discussed with the agenda proposed. The Korean situation with respect to ethics development shows the interactions between groups participating in policy development and its collaborative nature.

Factors Associated with Advance Directives Documentation: A Nationwide Cross-Sectional Survey of Older Adults in Korea.

Advance directives (ADs) can support autonomy in making healthcare decisions and minimize unnecessary discomfort during the treatment process at the end of life (EOL). This study aimed to investigate the factors that influence AD documentation among community-dwelling older adults. We used data from the National Survey of Older Koreans which was conducted nationwide in 2020. Data from participants aged 65 years or older were extracted using stratified multistage cluster sampling and the survey was conducted through one-on-one interviews. A total of 9920 older adults were included in this study: 421 respondents (4.7%) claimed that they had prepared for AD. Multivariable logistic regression analysis showed that being 75 years or older, having higher educational attainment, higher income, having any chronic disease(s), being screened for dementia in the past, being against futile life-sustaining treatment, taking a lecture on death and being registered for organ donation were positively associated with AD. Furthermore, when health was rated as average, it was associated with reduced odds of AD documentation compared when health was rated as good. These results suggest that more targeted efforts are required to promote EOL discussions among older adults.

COVID-19 Pandemic, Transparency, and "Polidemic" in the Republic of Korea.

This article examines the development of the Republic of Korea's strategy to prevent the spread of COVID-19 with particular focus on ethical issues and the problem of politicization of public communication. Using prominent examples of stakeholders who have acted and expressed themselves in highly contradictory ways on the topic of the pandemic, we provide an analysis of how the public health policy discourse has entered into the realm of politicization and elaborate on the danger that this phenomenon poses in terms of rational debate and appropriate policy measures geared toward the public's safety. Considering the role that the Republic of Korea have had in global media coverage of quarantine policies and epidemic prevention, we believe that our study makes a significant contribution to the literature because it provides a new perspective and insights into the forces at work within and around a prevention strategy that has both been lauded and seen as highly controversial.

Genetic discrimination: introducing the Asian perspective to the debate.

Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices. Based on our findings, policy discussion and action on preventing or mitigating GD have been narrowly framed in terms of employment, insurance, disability, marriage, and family planning. Except for South Korea, none of the jurisdictions we examined has adopted specific legislation to prevent GD. However, for Asia to truly benefit from its recent scientific and technological progress in genomics, we highlight the need for these jurisdictions to engage more proactively with the challenges of GD through a coordinated regulatory and governance mechanism.

ELSI practices in genomic research in East Asia: implications for research collaboration and public participation.

Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the 'ELSI 2.0' initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries.

Humanitarian responses and their ethical implications.

As the frequency and seriousness of natural disasters increase, humanitarian response gains interests. Disaster, as a threat to a society, exposes the weaknesses of that society and aids from agents other than that society are needed in the disaster situation. This nature of humanitarian response makes ethical consideration necessary, but as the context is different, ethical concerns and principles are also different from those of conventional medical ethics. Ethical justification is essential to humanitarian responses, and ethical standards and ideals should be considered during the humanitarian responses.

[Conflict of interest in medical practice and research].

In recent years, medical professionals are in charge with multiple roles. They have to work as an educator, researcher, and administrator, as well as medical practitioner. In addition, they experience a conflict between the primary responsibilities that each role requires of them. A conflict of interest (COI) is a set of circumstances that creates a risk that professional judgment or actions regarding a primary interest will be unduly influenced by a secondary interest. It occurs when an individual or organization is involved in multiple interests, one of which could possibly corrupt the motivation for an act in the other. The COI should be managed appropriately to preserve the value of public trust, scientific objectivity, and the benefit and safety of patients. Primary interest of medical professionals refers to the principal goals of the medical profession, such as the health and safety of patients, and the integrity of research. Secondary interest includes not only financial gain but also such motives as the desire for professional advancement and the wish to do favors for family and friends, but COI rules usually focus on financial relationships because they are relatively more objective, fungible, and quantifiable. This article will briefly review the COI in medical practice and research, discuss about what is COI, why we should manage it, and how we can manage it.