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Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families. Design: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. Data sources: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. Results: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. Conclusions: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services.

Background:Asian healthcare professionals hold that patients’ families play an essential role in advance care planning.Aim:To systematically synthesize evidence regarding Asian patients’ perspectives on advance care planning and their underlying motives.Design:Mixed-method systematic review and the development of a conceptual framework (PROSPERO: CRD42018099980).Data sources:EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for studies published until July 27, 2020. We included studies concerning seriously-ill Asian patients’ perspectives on advance care planning or their underlying motives for engaging or not engaging in it.Results:Thirty-six articles were included; 22 were quantitative and 27 were from high-income countries. Thirty-nine to ninety percent of Asian patients were willing to engage in advance care planning. Our framework highlighted that this willingness was influenced not only by their knowledge of their disease and of advance care planning, but also by their beliefs regarding: (1) its consequences; (2) whether its concept was in accordance with their faith and their families’ or physicians’ wishes; and (3) the presence of its barriers. Essential considerations of patients’ engagement were their preferences: (1) for being actively engaged or, alternatively, for delegating autonomy to others; (2) the timing, and (3) whether or not the conversations would be documented.Conclusion:The essential first step to engaging patients in advance care planning is to educate them on it and on their diseases. Asian patients’ various beliefs about advance care planning should be accommodated, especially their preferences regarding their role in it, its timing, and its documentation.

Palliative care is premised on the keystone principle that “total pain” involves suffering in the potentially reciprocally impacting physical, psychological, social, and spiritual domains. It is, therefore, underpinned by a multidimensional, biopsychosocial-spiritual model of care provision. Palliative care providers should not simply assess and manage these multiple domains of patient suffering holistically—including end-of-life spiritual concerns—but do so with a cognisance of, and sensitivity to, prevailing cultural practices and expectations within which the patient, their family and community, exist. This chapter explores palliative care provision at the interface between culture and spirituality, using four brief case studies from China, Taiwan, New Zealand, and sub-Saharan Africa. Insufficient research exists on culturally safe approaches to palliative care, especially among indigenous populations, as determinants of expectations and experiences of service users, and how services are organized and delivered. Similarly, more research is needed regarding the models of spiritual care provision, how death and the dying process are understood, how people find meaning in illness, and the preferred communication and rituals surrounding and planning for death. The chapter therefore proposes the need for research into the culture–spirituality–palliative care nexus. It concludes that by being sensitive to patients’ spiritual and cultural needs and wants, palliative care practitioners acquire the insights and understanding necessary to provide holistic care for the whole person, to address their suffering in its totality, in accord with the biopsychosocial-spiritual model of care provision, as well as helping ensure that their dignity, right to self-determination, and autonomy are respected.

Evidence shows that community-based palliative home care (PHC) provision enhances continuous care and improves patient outcomes. This study compared patient survival, place of death, and medical utilization in community- versus hospital-based PHC. A retrospective cohort study was conducted of patients aged over 18 referred to either community- or hospital-based PHC from May to December 2018 at a tertiary hospital and surrounding communities in Southern Taiwan. A descriptive analysis, Chi-square test, t-test, and Log-rank test were used for the data analysis of 131 hospital-based PHC patients and 43 community-based PHC patients, with 42 paired patient datasets analyzed after propensity score matching. More nurse visits (p = 0.02), fewer emergency-room visits (p = 0.01), and a shorter waiting time to access PHC (p = 0.02) were found in the community group. There was no difference in the duration of survival and hospitalization between groups. Most hospital-based patients (57%) died in hospice wards, while most community-based patients died at home (52%). Community-based PHC is comparable to hospital-based PHC in Taiwan. Although it has fewer staffing and training requirements, it is an alternative for terminal patients to meet the growing end-of-life care demand.

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.

Background: Hospice and palliative care services provision for COVID-19 patients is crucial to improve their life quality. There is limited evidence on COVID-19 preparedness of such services in the Asia-Pacific region. Aim: To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the COVID-19 pandemic. Method: An online cross-sectional survey was developed based on methodology guidance. Asia-Pacific Hospice and Palliative Care Network subscribers (n = 1551) and organizational members (n = 185) were emailed. Descriptive analysis was undertaken. Results: Ninety-seven respondents completed the survey. Around half of services were hospital-based (n = 47, 48%), and public-funded (n = 46, 47%). Half of services reported to have confirmed cases (n = 47, 49%) and the majority of the confirmed cases were patients (n = 28, 61%). Staff perceived moderate risk of being infected by COVID-19 (median: 7/10). > 85% of respondents reported they had up-to-date contact list for staff and patients, one-third revealed challenges to keep record of relatives who visited the services (n = 30, 31%), and of patients visited in communities (n = 29, 30%). Majority of services (60%) obtained adequate resources for infection control except face mask. More than half had no guidance on Do Not Resuscitate orders (n = 59, 66%) or on bereavement care for family members (n = 44, 51%). Conclusion: Recommendations to strengthen the preparedness of palliative care services include: 1) improving the access to face mask; 2) acquiring stress management protocols for staff when unavailable; 3) reinforcing the contact tracing system for relatives and visits in the community and 4) developing guidance on patient and family care during patient’s dying trajectory.

Advance care planning (ACP) provides access to complete advance decisions (ADs). Despite the legalization of ACP in Taiwan, it is underutilized in community settings. The objective of this study is to describe the service at a community hospital in Southern Taiwan. We retrospectively analyzed participants who were engaged in ACP consultations from January 2019 to January 2020. The characteristics, motivations, content, and satisfaction of participants are reported. Factors associated with refusing life-sustaining treatments (LST) or artificial nutrition/hydration (ANH) were analyzed using multivariate logistic regression. Of the 178 participants, 123 completed the ACP. The majority were female (64.2%), aged 61 on average and more than 80% had never signed a do-not-resuscitate order. In the ADs, most participants declined LST (97.2%) and ANH (96.6%). Family-related issues (48.9%) were the most prevalent motivations. Rural residence (OR 8.6, p = 0.005), increased age (OR 7.2, p = 0.025), and reluctance to consent to organ donation (OR 5.2, p = 0.042) correlated with refusing LST or ANH. Participants provided a positive feedback regarding overall satisfaction (good, 83%) compared to service charge (fair/poor, 53%). The study demonstrated high AD completion when refusing LST or ANH. These findings may facilitate the development of ACP as a community-based service.

Supplemental Material, sj-pdf-1-ajh-10.1177_10499091211002797 for Preparedness to Face the COVID-19 Pandemic in Hospice and Palliative Care Services in the Asia-Pacific Region: A Rapid Online Survey by Cheng-Pei Lin, Sabah Boufkhed, Yoshiyuki Kizawa, Masanori Mori, Ednin Hamzah, Ghauri Aggarwal, Eve Namisango, Irene J. Higginson, Cynthia Goh and Richard Harding in American Journal of Hospice and Palliative Medicine®

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&rsquo, 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&rsquo, preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people&rsquo, 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&ndash, Pacific region.

Background: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption. Aim: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals. Methods: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants’ view on their involvement in the study. Patients’ medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis. Results: N = 29 participants ( n = 10 patients; n = 10 family members and n = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components ( n = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives’ experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research. Conclusion: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.

The Kano model is used to explore the needs of the elderly for mobile station APP. First of all, through user research and analysis of the elderly users of the use process of the requirements. Secondly, we use the method of Kano model questionnaire to screen and classify the demand items, convert the user’s demand into design elements, calculate the weight of attractive demand items by entropy method, rank the importance, and determine the key design elements. Finally, the interactive prototype of mobile station APP is proposed. The application research of mobile station APP for the aged integrated with Kano model not only provides good user experience for the aged users, but also provides theoretical basis and objective data for the design of similar products. China has already entered the aging society, according to the expert conjecture, our country aging problem will reach the serious stage by 2020, and in 2050, our country aged population will account for one fifth of the total population [1]. Old people used to be the main users of radio products, but most of the users of the existing mobile station APP products were teenagers and middle-aged people, while the old people were few. In order to provide the elderly with a good user experience of mobile radio products, this paper uses Kano model to analyze the needs of elderly users and apply it in design practice.

Additional file 6: Figure S6. Decreased of p62 protein level and enhanced of the proteasome activities in the spinal cord, but not the forebrain, of symptomatic N390D/+ mice.

Background: No systematic review has focused on conceptual models underpinning advance care planning for patients with advanced cancer, and the mechanisms of action in relation to the intended outcomes. Aim: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining the components, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes. Design: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrative synthesis was used for data analysis. Data sources: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGrey with reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials with advance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for quality appraisal. Results: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through which advance care planning improved outcomes comprised (1) increasing patients’ knowledge of end-of-life care, (2) strengthening patients’ autonomous motivation, (3) building patients’ competence to undertake end-of-life discussions and (4) enhancing shared decision-making in a trustful relationship. Samples were largely highly educated Caucasian. Conclusion: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, they identify the individual behavioural change. Strengthening patients’ motivation and competence in participating advance care planning discussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels and ethnicities in non-Western countries should be a research priority.

Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.

In this paper, we propose a 3D limb trajectory tracking system, named BodyTracker, which is based on deep learning techniques for assisting rehabilitation. The proposed BodyTracker is composed of two limbs recognition camera and a deep learning training server. As a result, the proposed system can provide medical personnel with an effective way to assess the effectiveness of rehabilitation for stroke patients.

Supplemental material, 040419_Supplementary_materials for 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 by Cheng-Pei Lin, Catherine J Evans, Jonathan Koffman, Shuh-Jen Sheu, Su-Hsuan Hsu and Richard Harding in Palliative Medicine

Objective: The value of advance care planning (ACP) for patients with life-limiting illnesses is widely recognized but Asian health care professionals' (HCPs') perspectives on ACP have received little systematic attention. We aim to synthesize evidence regarding Asian HCPs’ knowledge of, attitudes toward, and experiences with ACP. Design: Systematic review with narrative synthesis and stepwise thematic analysis. Setting and Participants: HCPs in southern, eastern, and southeastern Asia. Methods: Studies from inception to September 2019 were identified from English-language searches of Embase, MEDLINE, Web of Science, and Google Scholar with reference-chaining and hand-searching. Two investigators independently screened and assessed the risk of bias in all original studies reporting HCPs’ knowledge of, attitudes toward, and experiences with ACP, including their perspectives toward barriers and facilitators of ACP. Results: Fifty-one studies were included; 42 were quantitative, 43 had been conducted in high-income countries, and 36 were of good quality. Twenty-six studies operationalized ACP as the completion of an advance directive rather than a value-exploration process. Thirteen studies reported knowledge, 44 attitudes, 29 experiences, and 36 barriers and facilitators of ACP. Asian HCPs addressed the essential role of families in ACP. They acknowledge the importance of ACP but rarely engage the patient in it. They considered ACP difficult to initiate, partly because of their lack of knowledge and skills in ACP, personal uneasiness to conduct ACP, fear of conflicts with family members and their legal consequences, and the lack of a standard system for ACP. Most studies indicated HCPs’ low engagement and late initiation of ACP. Conclusions and Implications: Despite acknowledging its importance, Asian HCPs felt that engaging in ACP is challenging. Capacity building for ACP in Asia should focus on culturally adapting ACP models concerning the essential role of the family in Asia, education for HCPs and the public, and providing institutional support for ACP.

Background: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. Aim: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. Methods: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. Results: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1–10 scale). Conclusion: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.

With dramatically increasing proportions of older people, global ageing has remarkably influenced healthcare services and policy making worldwide. Older people represent the majority of patients with cancer, leading to the increasing demand of healthcare due to more comorbidities and inherent frailty. The preference of older people with cancer are often ignored, and they are considered incapable of making choices for themselves, particularly medical decisions. This might impede the provision of their preferred care and lead to poor healthcare outcomes. Advance care planning (ACP) is considered an effective intervention to assist older people to think ahead and make a choice in accordance with their wishes when they possess capacity to do so. The implementation of ACP can potentially lead to positive impact for patients and families. However, the assessment of mental capacity among older adults with cancer might be a crucial concern when implementing ACP, as loss of mental capacity occurs frequently during disease deterioration and functional decline. This article aims to answer the following questions by exploring the existing evidence. How does ACP develop for older people with cancer? How can we measure mental capacity and what kind of principles for assessment we should apply? What are the facilitators and barriers when implementing an ACP in this population? Furthermore, a discussion about cultural adaptation and relevant legislation in Asia is elucidated for better understanding about its cultural appropriateness and the implications. Finally, recommendations in relation to early intervention with routine monitoring and examination of capacity assessment in clinical practice when delivering ACP, reconciling patient autonomy and family values by applying the concept of relational autonomy, and a corresponding legislation and public education should be in place in Asia. More research on ACP and capacity assessment in different cultural contexts and policy frameworks is highlighted as crucial factors for successful implementation of ACP.