Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study.

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients' frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads' preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people's medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia-Pacific region.

Patients' preferences and factors influencing initial advance care planning discussions' timing: A cross-cultural mixed-methods study.

BACKGROUND: Although advance care planning discussions are increasingly accepted worldwide, their ideal timing is uncertain and cultural factors may pertain. AIM: To evaluate timing and factors affecting initiation of advance care planning discussions for adult patients in Japan and Taiwan. DESIGN: Mixed-methods questionnaire survey to quantitatively determine percentages of patients willing to initiate advance care planning discussions at four stages of illness trajectory ranging from healthy to undeniably ill, and to identify qualitative perceptions underlying preferred timing. SETTING/PARTICIPANTS: Patients aged 40-75 years visiting outpatient departments at four Japanese and two Taiwanese hospitals were randomly recruited. RESULTS: Overall (of 700 respondents), 72% (of 365) in Japan and 84% (of 335) in Taiwan (p < 0.001) accepted discussion before illness. In Japan, factors associated with willingness before illness were younger age and rejection of life-sustaining treatments; in Taiwan, older age, stronger social support, and rejection of life-sustaining treatments. Four main categories of attitudes were extracted: the most common welcomed discussion as a wise precaution, responses in this first category outnumbered preference for postponement of discussion until imminent end of life, acceptance of the universal inevitability of death, and preference for discussion at healthcare providers' initiative. CONCLUSION: The majority of patients are willing to begin discussion before their health is severely compromised; about one out of five patients are unwilling to begin until clearly facing death. To promote advance care planning, healthcare providers must be mindful of patients' preferences and factors associated with acceptance and reluctance to initiate advance care planning.

What influences patients' decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.

BACKGROUND: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. AIM: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. METHOD: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. RESULTS: Forty-five participants were interviewed (n = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. CONCLUSION: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.

Bibliometric Analysis of Palliative Care-Related Publication Trends During 2001 to 2016.

BACKGROUND: The scientific contributions (publications) and international influence (citations) from authors providing the palliative care (PC)-related literature has a limited number of bibliometric reports. We aimed to analyze PC-related literature using the Institute for Scientific Information Web of Science (WoS) database. METHODS: WoS database was used to retrieve publications with the following key words with title: "palliative care" OR "End of Life care" OR "terminal care.". The statistical analysis of the documents published during 2001 to 2016 was performed. The quantity and quality of research were assessed by the number of total publications and citation analysis. In addition, we also analyzed whether there were possible correlations between publication and socioeconomic factors. RESULTS: The total research output was 6273 articles for PC. There was a 3-fold increase in the number of publications during the period and strong correlation between the year and number of PC-related publications ( R2 = .96). The United States took a leading position in PC research (2448, 39.0%). The highest average citations was reported for the Norway (21.8). Australia had gained the highest productive ability in PC research (24.9 of articles per million populations). The annual impact factor rose progressively with time and increased 1.13 to 2.24 from 2003 to 2016. The number of publications correlated with gross domestic product ( r = .74; P < .001). CONCLUSION: The United States and United Kingdom contributed most of the publications, but some East Asian countries also had a great performance. According to the socioeconomic factors, the publication capacity of top 20 countries is correlated with their economic scale.

[The Promotion of Resources Integration in Long-Term Care Service: The Experience of Taipei City Hospital].

The home-based medical care integrated plan under Taiwan National Health Insurance has changed from paying for home-based medical care, home-based nursing, home-based respiratory treatment, and palliative care to paying for a single, continuous home-based care service package. Formerly, physician-visit regulations limited home visits for home-based nursing to providing medical related assessments only. This limitation not only did not provide practical assistance to the public but also caused additional problems for those with mobility problems or who faced difficulties in making visits hospital. This 2016 change in regulations opens the door for doctors to step out their 'ivory tower', while offering the public more options to seek medical assistance in the hope that patients may change their health-seeking behavior. The home-based concept that underlies the medical service system is rooted deeply in the community in order to set up a sound, integrated model of community medical care. It is a critical issue to proceed with timely job handover confirmation with the connecting team and to provide patients with continuous-care services prior to discharge through the discharge-planning service and the connection with the connecting team. This is currently believed to be the only continuous home-based medical care integrated service model in the world. This model not only connects services such as health literacy, rehabilitation, home-based medical care, home-based nursing, community palliative care, and death but also integrates community resources, builds community resources networks, and provides high quality community care services.

Establishment of a renal supportive care program: Experience from a rural community hospital in Taiwan.

Renal supportive care (RSC) denotes a care program dedicated for patients with acute, chronic renal failure, and end-stage renal disease (ESRD), aiming to offer maximal symptom relief and optimize patients' quality of life. The uncertainty of prognosis for patients with chronic kidney disease and ESRD, the sociocultural issues inherent to the Taiwanese society, and the void of structured and practical RSC pathway, contributes to the underrecognition and poor utilization of RSC. Taiwanese patients rarely receive information regarding RSC as part of a standardized care and are not commonly offered this option. In National Taiwan University Hospital Jinshan branch, we started a RSC subprogram, supported by the community-based palliative/hospice care main program. We focused on understanding the need and providing the choice of RSC to suitable candidates. A three-step and four-phase protocol was designed and implemented to identify appropriate patients and to enhance the applicability of the RSC. We harnessed family visit and home-based family meeting as a vehicle to understand the patients' preferences, to discover what ESRD patients and their family value most, and to introduce the option of RSC. In the current review, we described our pilot experience of establishing a RSC program in Taiwan, and discuss its potential advantage.

[The present and future of community/home-based palliative care in Taiwan].

In Taiwan, the Department of Health (DOH) has implemented regulations and policies related to hospice and palliative care since 1995. Taiwan is the first country in Asia to have a Natural Death Act, promulgated in 2000. Although recognition of the need for palliative care in non-cancer terminally ill patients is increasing, at present, the needs of these patients are often not met. Moreover, while a majority of the population prefers to die at home, the percentage of patients who die in the home setting remains small. The palliative care system should be adjusted to improve the accessibility and continuity of care based on the needs of patients. Therefore, the Jin-Shan Branch of the National Taiwan University Hospital has run a pilot community palliative care service model since 2012. National Health Insurance reimbursement was introduced in 2014 for community-based palliative care services. Establishing a formal system of community-based palliative care should be encouraged in order to improve the quality of care at the end of life and to allow more patients to receive end-of-life care and die in their own communities. This system will require that skilled nurses provide discharge planning, symptoms control, end-of-life communications, social-resources integration, and social-support networks in order to achieve a high quality of end-of-life care.

Withdrawal from long-term hemodialysis in patients with end-stage renal disease in Taiwan.

Withdrawal from dialysis is ethically appropriate for some patients with multiple comorbidities and a shortened life expectancy. Taiwan has the highest prevalence of dialysis patients in the world, and the National Health Insurance (NHI) program offers renal replacement therapy free of charge. In this review, we discuss its current status and many background issues related to withdrawing dialysis from patients with advanced renal failure in Taiwan. Compared with dialysis therapy, the medical resources for hospice care are relatively sparse. Since the announcement of the Statute for Palliative Care in 2000, there has been a gradual improvement in the laws and health polices supporting dialysis withdrawal. Culture and social customs also have a significant impact on the practice of hospice care. Based on current evidence and in accordance with the local environment, we propose recommendations for the clinical practice of dialysis withdrawal and hospice care. There remains a need to expand upon the community-based hospice care and home care systems to better serve patients. In conclusion, there are cross-cultural differences relating to dialysis withdrawal between Taiwan and Western countries. Our experience and clinical recommendations may be helpful for the countries with NHI systems or for the Eastern countries.