Terminally ill patients' and their relatives' experiences and behaviors regarding complementary and alternative medicine utilization in hospice palliative inpatient care units: a cross-sectional, multicenter survey.

BACKGROUND: Terminally ill patients often experience exacerbations of diseases that render mainstream medicine ineffective in relieving symptoms, prompting attempts at complementary and alternative medicine (CAM). This study collected data from terminally ill patients and their relatives to determine differences between CAM use, behavioral patterns, and perceptions of health information about CAM. METHODS: A cross-sectional design using a self-administered questionnaire was adopted. Eight medical institutions in Taiwan with inpatient hospice palliative care units were chosen. Ninety-two terminally ill patients and 267 relatives met the inclusion criteria. The questions concerned the experience of CAM use, the kinds of products/services CAM provided, the purpose of CAM use, the source of CAM information, and the perceptions and attitudes toward CAM. RESULTS: Both terminally ill patients and their relatives have a high proportion of lifetime and one-year prevalence of CAM use (88.0% vs. 88.4%; p = 0.929). CAM use for musculoskeletal and neurological discomfort is higher among terminally ill patients than among their relatives. Relatives/friends are the most frequent sources of information on CAM (53.3% vs. 62.2%; p = 0.133). The percentage of terminally ill patients who discontinued mainstream medical treatment because of CAM use was higher than that of their relatives (18.5% vs. 9.3%; p = 0.026). More than half the terminally ill patients and their relatives had never been asked about CAM by medical staff (64.1% vs. 66.7%), nor had they informed medical professionals about the use of CAM products and services (63% vs. 66.9%). Random inquiries by medical professionals may be associated with increased disclosure of CAM use (terminally ill patients: odds ratio, 9.75; 95% confidence interval, 1.97-48.35 vs. relatives: odds ratio, 5.61; 95% confidence interval, 2.66-11.83). CONCLUSIONS: The high prevalence and concealment of CAM use in terminally ill patients should be considered. Medical professionals should establish a friendly and barrier-free communication model, encourage patients to share CAM experiences, and provide evidence-based information on the use of CAM products and services, to reduce the potential damage caused by harmful use.

Reliability and Validity of the Traditional Chinese Version of the Advance Care Planning Engagement Survey: A Pilot Evaluation in Taiwanese Outpatients.

Objective: The Advance Care Planning Engagement Survey (ACP-ES) has proven effective in evaluating individuals' engagement in advance care planning (ACP). However, a Traditional Chinese version of ACP-ES (ACPES-TC) has not yet been developed. Therefore, this study aimed to translate and preliminarily validate the ACPES-TC in the Taiwanese context. Material and Methods: A forward and backward translation process was conducted. The translated questionnaire was confirmed by clinical and academic experts. The ACPES-TC was then evaluated for its reliability and validity with participants in the community and from an outpatient clinic in a medical center in Northern Taiwan. The participants comprised healthy people aged 20 to 30 years and patients ≥55 years old, recruited from September 17 to October 28, 2019. Results: Seventy people were recruited, including 20 people aged 20 to 30 years in the community and 50 patients ≥ 55 years old from clinics. The ACPES-TC scores are significantly higher among those of older age, having financial independence, and under long-term medication (p < .05). The patients' preference for health-related decision-making is significantly correlated with the ACPES-TC score; the point-biserial correlation coefficient is 0.46 (p < .001). The discriminant and criterion-related validities are verified. The ACPES-TC demonstrated a good internal consistency (Cronbach's α .97), acceptable one-week test-retest reliability (overall intraclass correlation coefficient 0.86), and low practice effect between the test and retest (Cohen's d .43). Conclusion: The overall reliability and validity of the ACPES-TC are fair, which could be used to evaluate the patients' engagement in ACP in Taiwan. However, further studies with a full-scale psychometric evaluation are needed.

Factors related to spiritual well-being in the last days of life in three East Asian countries: An international multicenter prospective cohort study.

BACKGROUND: Some factors associated with spiritual well-being in dying patients have previously been reported. However, there has been no cross-cultural study comparing factors related to spiritual well-being. The current investigation may shed light on this under-investigated area through a comparison of diverse factors. AIM: We aimed to (1) examine factors associated with spiritual well-being in the last days and (2) compare those factors across three East Asian countries. DESIGN: This is an international multicenter prospective cohort study. SETTING/PARTICIPANTS: Newly admitted inpatients with far advanced cancer in palliative care units in Japan, Korea and Taiwan were enrolled. Each patient was classified into one of two groups based on spiritual well-being score in the last days of life. Univariate and multivariate analyses were performed to identify the factors related to better spiritual well-being score in each country. RESULTS: A total of 1761 patients treated at 37 palliative care units from January 2017 to September 2018 were analyzed. Seven variables were significant in Japan, three in Korea, and five in Taiwan. "Good death scale [acceptance]," "fatigue" and "expressed wish for hastened death" were unique in Japan. "Visit from a pastoral care worker within 48 h of death" was unique in Korea. "Patient's preferences for place of death," "dyspnea" and "continuous deep sedation" were unique in Taiwan. CONCLUSIONS: This study found novel factors related to spiritual well-being in the last days of life, several of which differed according to country. Recognition of factors associated with spiritual well-being can improve the quality of palliative care.

Professionals' experiences and attitudes toward use of Traditional Chinese Medicine in hospice palliative inpatient care units: A multicenter survey in Taiwan.

BACKGROUND: Medical staff may have difficulties in using conventional medicine to manage symptoms among terminally ill patients, including adverse effects of the treatment. Traditional Chinese medicine (TCM) is regarded as a complementary or alternative medicine, and has been increasingly used in the field of palliative medicine in recent years. This study aimed to investigate the experiences of and attitudes toward using TCM among palliative care professionals, and to provide preliminary information about its use in palliative care. METHODS: This was a cross-sectional survey study conducted in eight inpatient hospice wards in Taiwan between December 2014 and February 2016. The questionnaire was self-administered, and was analyzed with descriptive statistics including Pearson's Chi-square test and Fisher's exact test. RESULTS: A total of 251 palliative care professionals responded to the questionnaire, of whom 89.7% and 88.9% believed that the use of TCM could improve the physical symptoms and quality of life in terminally ill patients, respectively. Overall, 59.8%, of respondents suggested that TCM had rare side effects, and 58.2% were worried that TCM could affect the liver and kidney function of patients. In total, 89.7% and 88.0% of professionals agreed there were no suitable clinical practice guidelines and educational programs, respectively, for TCM use in palliative care. CONCLUSIONS: Most of the respondents agreed there was insufficient knowledge, skills-training, and continuing education on the use of TCM in terminally ill patients in Taiwan. These results show that to address patient safety considerations, guidelines about use of TCM in palliative care should be established.

HOme-based Longitudinal Investigation of the multidiSciplinary Team Integrated Care (HOLISTIC): protocol of a prospective nationwide cohort study.

BACKGROUND: The use of home health care (HHC) is increasing worldwide. This may have an impact not only on patients and their caregivers' health but on care resource utilization and costs. We lack information on the impact of HHC on the broader dimensions of health status and care resource utilization. More understanding of the longitudinal HHC impact on HHC patients and caregivers is also needed. Moreover, we know little about the synergy between HHC and social care. Therefore, the present study aims to observe longitudinal changes in health, care resource utilization and costs and caregiving burden among HHC recipients and their caregivers in Taiwan. METHODS: A prospective cohort study "Home-based Longitudinal Investigation of the Multidisciplinary Team Integrated Care (HOLISTIC)" will be conducted and 600 eligible patient-caregiver dyads will be recruited and followed with comprehensive quantitative assessments during six home investigations over two years. The measurements include physical function, psychological health, cognitive function, wellbeing, shared decision making and advance care planning, palliative care and quality of dying, caregiving burden, continuity and coordination of care, care resource utilization, and costs. DISCUSSION: The HOLISTIC study offers the opportunity to comprehensively understand longitudinal changes in health conditions, care resource utilization and costs and caregiving burden among HHC patients and caregivers. It will provide new insights for clinical practitioners and policymakers. TRIAL REGISTRATION: ClinicalTrials.gov Identifier is NCT04250103 which has been registered on 31st January 2020.