The intensive care unit (ICU) is no stranger to death, but one patient encounter struck a particularly poignant chord within me during my second year of residency. Mrs Y, a native of China, was barely in her 40s when she was diagnosed with metastatic adenocarcinoma.
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In China, the development of palliative care is challenging because of limited available resources and rapidly increasing demands. The nurses' competence is a significant element in providing high-quality palliative care. This cross-sectional study aimed to describe the palliative care competence among oncology nurses and to examine the relationships between it and palliative care knowledge, attitudes, and workplace learning conditions. A total of 220 nurses with more than 6 months of experience and who worked in inpatient wards were invited to participate in this study. Four questionnaires were administered to collect data-the Palliative Care Quiz for Nurses, the Attitudes Toward Palliative Care Scale, the Workplace Learning Conditions scale, and the Palliative Care Nursing Self-competence Scale. The data were analyzed using descriptive statistics and Pearson correlations. The moderate level of competence was reported by 212 participants (response rate, 96.36%). The scores were lower in the aspects of competence such as spiritual care and ethical and legal issues. Competence was positively related to workplace learning conditions and knowledge but not attitudes. The results highlighted the necessity of improving the palliative care competence among oncology nurses. The optimization of learning conditions in the hospital is recommended to be a vital force in strengthening competence.
Compared with clear-cut loss by death, ambiguous loss is defined as a loss that is not definite because the person is missing or mentally absent but physically present (e.g., through Alzheimer's disease). We expected the ambiguity of loss to show in psychologically more compromised loss memories and self-defining memories, but not in autobiographical memories in general. Thirty Chinese adults who had lost a parent through death, thirty whose parent had gone missing, and thirty who cared for a demented parent narrated their loss experiences and memories of sad and turning-point events as well as self-defining memories. Individuals with ambiguous loss narrated the loss and a self-defining memory with more contamination and fewer redemption sequences, and only the loss memory with fewer themes of agency and communion than individuals with definite loss, but not in memories of sad and turning point events. Effects of ambiguity of loss were independent of prolonged grief, which in turn independently predicted some of these effects. Thus the ambiguous quality of loss predicts effects on loss memories and self-defining memories independently of psychiatric symptoms.
Objective: This unprecedented systematic review aims to unearth the rate of CG among Chinese people.
Methods: Data sources were from PsycINFO, ProQuest Databases, Web of Science, PsycARTICLES, China National Knowledge Infrastructure (CNKI), WanFang, Taiwan Periodical Literature System (TPLS), HKInChiP from the inception to June 2019. The eligibility criteria for inclusion were (a) including or useful to calculate the prevalence of CG in Chinese settings, (b) published in journals, (c) containing information on sample size, (d) full texts either written in English or in Chinese are available. Thirteen studies were engaged in meta-analytic evaluation after the systematic review. They were appraised by the risk of bias (RoB) for publication-quality and synthesized through meta-analysis for identifying the prevalence of CG among Chinese people.
Results: Meta-analysis revealed a pooled estimate of CG of 22.0% (95% CI: 0.111–0.391). The studies identified in this review were of methodological heterogeneousness and focused on the population at high risk of CG. They were a moderate or high risk of bias.
Conclusion: Results warrant the need to conduct a population-based and quality study to investigate the prevalence of CG in Chinese people. Many suggestions on treatment for Chines people with CG were provided.
BACKGROUND: The American Society of Clinical Oncology recently recommends patients with metastatic non-small cell lung cancer (NSCLC) should be offered palliative care services earlier. We sought to investigate the timing of palliative care referral of Chinese patients with NSCLC in our center.
METHOD: Retrospective medical data including demographic characteristics and referral information were collected for analysis. Overall survival (OS) was calculated as the time since cancer diagnosis till patient's death. The time interval from palliative care (PC) referral to a patient's death (PC-D) was calculated. The PC-D/OS ratio was calculated to illustrate the comparison of the duration of PC in the overall length of disease.
RESULTS: The mean age of 155 patients with advanced NSCLC was 62.83 years. Before referral to PC, 128 patients received anticancer treatment including surgeon (46.5%). Sixty-three (40.6%) patients died in palliative care unit. The median OS of 144 patients with end cutoff was 19 months (mean = 31.49, 95% confidence interval [CI] = 25.86-37.12). The median PC-D was 41 days (mean = 73.84, 95% CI = 60.37-87.40). The mean interval of PC-D/OS of 144 patients with definitely death time was 0.22 (SD: 0.27, 95% CI: 0.17-0.26). The median interval was 0.089. More than half of patients (n = 75, 51.8%) underwent PC less than 1% time (PC-D/OS < 0.1) of their whole disease course. Patients who were indigenous to Shanghai (P = .013) and who had brain metastasis (P = .072) had the potential longer PC-D/OS ratio. A high proportion of patients reported loss of appetite (92.8%) and fatigue (91.4%) at the initial of referral to PC.
CONCLUSION: This retrospective study, in a population of patients with advanced NSCLC, gave detailed information about PC services in a tertiary cancer center.
BACKGROUND: To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer.
METHODS: This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability.
RESULTS: 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0–10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach’s alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach’s alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min.
CONCLUSIONS: The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.
BACKGROUND: Pain is one of the most common symptoms that has a severe impact on quality of life and is associated with numerous psychosocial issues in cancer patients. Palliative care, which is a recent development in China, mainly focuses on symptom control and provides psychosocial support in order to improve quality of life for terminally ill patients. This meta-analysis aimed to evaluate the effects of palliative care on cancer pain in China.
METHODS: The four most comprehensive Chinese academic databases-CNKI, Wanfang, Vip and CBM-were searched from their inception until July 2019. Medline/PubMed, Web of Science, EBSCO and internet search (Google and Google Scholar) were also searched. Randomized controlled studies assessing the effects of palliative care on cancer pain were analyzed. The pooled random-effect estimates of standardized mean difference (SMD) and 95% confidence intervals (CI) were calculated. Subgroup analysis was conducted by moderating factors for heterogeneity.
RESULTS: The present meta-analysis included 18 studies with a total of 1370 patients. The random-effect model showed a significant effect size of palliative care on cancer pain (SMD = 1.475, p < 0.001; 95% CI = 1.071–1.878). Age, pharmacological/non-pharmacological strategies and publication date could account for the heterogeneity through subgroup analysis to some extent.
CONCLUSIONS: Palliative care was largely effective for relieving pain among Chinese adults with cancer, indicating that an adequate system should be urgently established to provide palliative care for cancer patients in Chinese medical settings. However, given the extent of heterogeneity, our findings should be interpreted cautiously.
The combination of aging and losing their only adult child challenges an increasing number of older adults in China. Current literature primarily focuses on older parents' bereavement but seldom examines their effort to cope with subsequent life changes brought about by only-child loss. This study explores how older parents in Shanghai who lost their only adult child restore their lives and prepare for future care. Twenty-four older adults were purposively sampled and participated in face-to-face, in-depth interviews. The findings suggest that participants tried to restore their lives by rationalizing grief and expanding their social networks. Despite their losses, participants remained in favor of family caregiving and reluctantly prepared for future care. Their ambivalent attitudes toward government support call for caution in approaches to service delivery.
CONTEXT: Chinese medicine modalities, including acupuncture and Chinese herbal medicine (CHM), have been used as palliative interventions among cancer patients. More research should be conducted to confirm their effectiveness.
OBJECTIVES: To prioritize Chinese medicine clinical research questions for cancer palliative care.
METHODS: Twelve international experts, including physicians, Chinese medicine practitioners, nurses and clinical research methodologists (n=3 from each category) from Asia, North America, Australia and Europe participated in a two-round Delphi survey for prioritizing 29 research questions identified from existing systematic reviews. The experts were asked to i) rate clinical importance of answering the questions on a 9-point Likert scale; ii) provide qualitative comments on their ratings; and iii) suggest outcome measurement approaches.
RESULTS: Eight research priorities reached positive consensus after the two-round Delphi survey. Six of the priorities focused on acupuncture and related therapies; of which median ratings on importance ranged from 7.0 to 8.0 (interquartile range (IQR): 1.00 to 2.50), and the percentage agreement ranged from 75.0% to 91.7%. The remaining two priorities related to CHM; with median ratings ranged from 7.0 to 8.0 (IQR: 1.00 to 1.50), with percentage agreement ranged from 75.0% to 83.3%. Neither positive nor negative consensus was established among the remaining 21 questions.
CONCLUSION: The findings will inform rational allocation of scarce research funding for evaluating the effectiveness of Chinese medicine for cancer palliative care, especially on acupuncture and related therapies. Further research on herb safety and herb-drug interaction should be performed before conducting international trials on CHM.
OBJECTIVE: To explore the good death of terminally ill patients with cancer rated by nurses and identify associated factors in the context of Chinese culture.
METHODS: We conducted a cross-sectional, anonymous questionnaire survey. Totally, convenience samples of 122 nurses in charge of 258 patients during their dying period were investigated. The questionnaire consisted nurses' information including demographics and the experience in palliative care, patients' demographic information and disease characteristics, and Good Death Inventory (GDI).
RESULTS: Two hundred and fifty-eight (98.10%) analysable questionnaires were obtained. The total good death score was (245.40 ± 36.91), and the last three were "Independence" (7.34 ± 4.26), "Physical and psychological comfort" (8.12 ± 4.70) and "Religious and spiritual comfort" (8.44 ± 4.55); the first three were "Being respected as an individual" (18.31 ± 2.90), "Good relationship with medical staff" (18.26 ± 2.37) and "Natural death" (18.16 ± 3.22). The unit type, treatment patients received during their last 3 months and nurse's training experience in palliative care were associated factors of good death (R2 = 0.135, F = 9.160, p < .001).
CONCLUSION: The good death status of terminally ill cancer patients is poor. It's urgent to promote palliative care and strengthen the training about the knowledge and skills to improve the quality of life of the patients, so as to achieve the goal of good death.
The present work sought to explore grief patterns among Chinese older people in rural areas as well as the factors influencing the diverse bereavement results. Participants were 352 older residents who lived in rural areas in China. Latent profile analysis was used to identify subtypes of class membership in combing complicated grief, depression, anxiety, and meaning in life. One-way analysis of variance, chi-square analysis, and multinomial regression analysis were performed together to examine the predictor best distinguishing between classes. The latent profile analysis model best fitting the data was a three-class solution comprised of adaptive (n = 235; 66.8%), moderate maladaptive (n = 83; 23.6%), and severe maladaptive groups (n = 34; 9.7%). Compared to the severe maladaptive and moderate maladaptive groups, participants in the adaptive group had better physical functioning. Participants in the moderate maladaptive group had longer bereavement duration than those in the severe maladaptive group. Future replication is desirable for validating these subgroups.
Autobiographical memory has an important influence on the mental health of bereaved people. In this study, we conducted a questionnaire survey of 372 shiduers (parents who have lost their only child) to investigate the moderating role of familistic emotion in the effect of autobiographical memory function on depression and anxiety in shiduers. The results show that when either self-function or directive-function is the independent variable, familistic emotion plays a moderating role; however, when social function is the independent variable, familistic emotion does not play a moderating role. This article discusses the reasons for these results.
Hospice care emerged in mainland China in 1988, 30 years ago, but its development since that time has been slow. In 1994, the Ministry of Health listed hospice care into the Catalogue of Diagnostic and Therapeutic Subjects of Medical Institutions, but the public’s awareness of hospice and palliative care and the supply of it are still limited. Large numbers of people still die in acute hospitals. In recent years, hospice and palliative care has witnessed rapid development: in February 2017, the State Health Planning Commission issued a guideline for hospice care, which began to promote the work of hospice care nationwide. In May of 2019, the second batch of national pilot work on hospice care were chosen, 71 regions including whole area of Shanghai are being involved in developing local hospice care service.
OBJECTIVES: To explore advance directive (AD) preferences and the facilitators and barriers of promoting ADs among terminally ill older patients in China.
DESIGN: A scoping review was used to identify key themes in ADs.
SETTING AND PARTICIPANTS: Studies from 2007 to 2017 were identified from the MEDLINE and Cochrane libraries. Articles concerning important components of ADs in terminally ill older patients were selected.
MEASURES: Eligible articles concerning important components of ADs in terminally ill older patients were thematically synthesized. Later, implementation evidence was identified from core components.
RESULTS: We used 13 articles and identified key components in ADs: (1) Chinese cultural characteristics; (2) policy support; (3) advance care planning (ACP); (4) hospice-palliative care (HPC); (5) prognosis disclosure and life-sustaining treatment preference; (6) knowledge about ADs for patients and their families; (7) the prevalence of ADs; (8) implementation of ADs; (9) staff experience and training; and (10) effective communication between patients, their families, and health care professionals. Facilitators in implementing ADs included previous comfort-oriented end-of-life care experience of patients or their families, and the enactment of relevant policy. Barriers included traditional Chinese cultural beliefs; lack of policy; lack of knowledge of ADs, ACP, and HPC; and poor communication between physicians, patients, and family members.
CONCLUSIONS/IMPLICATIONS: Chinese patients still showed positive preferences toward ADs. The implementation of ADs could be promoted through public education about ADs, the learning of ACP and HPC, and relevant policy development in China.
OBJECTIVE: To determine factors influence place of death (POD) for end-stage cancer patients and investigate how the healthcare utilization mediates on the effect of socioeconomic status (SES) on POD.
DESIGN: A population-based, retrospective study from July 2015 to June 2017.
SETTING: Yichang, China.
PARTICIPANTS: 894 end-stage cancer patients.
MAIN OUTCOME MEASURE: POD.
RESULTS: Patients of hospital death experience more inpatient hospitalization services (IHS) and emergency department visits. Patients enrolled in the New Rural Cooperative Medical Scheme (OR = 7.60, P < 0.001) and Urban Employee Basic Medical Insurance (OR = 28.0, P < 0.001) have higher rates of hospital death than those in the Urban Resident-based Basic Medical Insurance. Living with spouse (OR = 1.72, P = 0.019) and receiving higher education (OR = 1.92, P = 0.004), increase the likelihood of hospital death by 72% and 92%, respectively. The probability of hospital death will increase by 14% and decrease by 4% per IHS and outpatient services occur, respectively. Outpatient services (Z = -2.28, P < 0.001), and IHS (Z = 2.17, P < 0.001) mediate 1.81% and 1.89%, respectively, of the effect of health insurance on POD. The overall effect of the mediators is non-statistically significant (Z = 0.09, P = 0.825).
CONCLUSION: POD is mainly driven by SES. The relationship between health insurance and POD is partly mediated by outpatient services and IHS, respectively. The results corroborated that hospital and home services should be coherently bridged. Furthermore, benefit packages for end-stage cancer patients could be redesigned.
This study examined gender differences in mental health of bereaved parents related to the gender of deceased only child in China, an only-child society with traditional culture of son preference, using data drawn from the China Family Planning Survey on Vulnerable Households in 2017. The findings indicated that parents with deceased only child suffered from more negative mental health symptoms than nonbereaved parents. For only-child-death families, there were no statistically significant gender differences in mental health of parents, and the gender of the deceased only child was basically unrelated to maternal/paternal mental health. Due to the implementation of one-child policy in China, both sons and daughters are highly prized and equally relied on by aging parents owing to the irreplaceability of the only child, which might moderate the effects of traditional culture of son preference on bereaved parental mental health.
The death of one’s only child in post-reproductive age (in Chinese, shidu) is a traumatic event that has specific cultural implications in China. This study investigates the experience of a changed life and emerging challenges amongst Chinese shidu parents. Thematic analysis of 36 interviews revealed four main life consequences following shidu: impairment of psychological and physical health, weakening of social networks and interactions, loss of meaning in life, and lack of care and security. We suggest that health monitoring and mental health intervention, adequate social and community support, and improved social security are the critical needs in this vulnerable group.
Background: Although palliative care has been accepted throughout the cancer trajectory, accurate survival prediction for advanced cancer patients is still a challenge. The aim of this study is to identify pre-palliative care predictors and develop a prognostic nomogram for overall survival (OS) in mixed advanced cancer patients.
Methods: A total of 378 consecutive advanced cancer patients were retrospectively recruited from July 2013 to October 2015 in one palliative care unit in China. Twenty-three clinical and laboratory characters were collected for analysis. Prognostic factors were identified to construct a nomogram in a training cohort (n = 247) and validated in a testing cohort (n = 131) from the setting.
Results: The median survival time was 48.0 (95% CI: 38.1–57.9) days for the training cohort and 52.0 (95% CI: 34.6–69.3) days for the validation cohort. Among pre-palliative care factors, sex, age, tumor stage, Karnofsky performance status, neutrophil count, hemoglobin, lactate dehydrogenase, albumin, uric acid, and cystatin-C were identified as independent prognostic factors for OS. Based on the 10 factors, an easily obtained nomogram predicting 90-day probability of mortality was developed. The predictive nomogram had good discrimination and calibration, with a high C-index of 0.76 (95% CI: 0.73–0.80) in the development set. The strong discriminative ability was externally conformed in the validation cohort with a C-index of 0.75.
Conclusions: A validated prognostic nomogram has been developed to quantify the risk of mortality for advanced cancer patients undergoing palliative care. This tool may be useful in optimizing therapeutic approaches and preparing for clinical courses individually.
Background: The C-reactive protein/albumin (CRP/Alb) ratio has been reported as a prognostic factor of survival for patients with a variety of cancers. However, its prognostic impact for advanced cancer patients receiving palliative care remains presently unknown.
Objective: The present study assessed the prognostic value of the CRP/Alb ratio, and compared this with that of the Glasgow Prognostic Score (GPS) and Palliative Prognostic Index (PPI) in a cohort of advanced cancer patients receiving palliative therapy.
Methods: The medical records of 262 eligible patients who died of advanced cancer from February 1, 2013 to December 30, 2017 in the palliative care unit of the Fudan University Shanghai Cancer Center were retrospectively reviewed for the analysis.
Results: The present results revealed that a CRP/Alb ratio =1.31 (hazard ratio [HR], 2.33 [1.78–3.05], p < 0.001) can predict poor prognosis through univariate analysis. In addition, the multivariate analysis revealed that CRP/Alb (HR, 2.09 [1.54–2.84], p < 0.001), GPS (HR, 1.81 [1.07–3.07], p < 0.001), and PPI (HR, 3.35 [2.25–4.99], p < 0.001) were all independent prognosis factors. To compare the discriminatory performance of the CRP/Alb ratio with that of other established prognostic indexes in palliative care settings, the c-statistics, integrated discriminatory improvement index, net reclassification index, and receiver operating characteristic curves were generated, and it was demonstrated that the CRP/Alb ratio (c-statistics, 0.64 [0.61–0.68]) was able to discriminate advanced cancer patients with different survivals, with analogous discriminatory ability as GPS (c-statistics, 0.63 [0.59–0.66]) and PPI (c-statistics, 0.64 [0.60–0.68]). Notably, the combination of multiple prognostic indexes exerted higher discriminatory ability, compared with any single predictive index (c-statistics, 0.69 [0.66–0.73], p < 0.001).
Conclusions: The present study suggests that the CRP/Alb ratio is a promising prognostic factor in predicting cancer patient survival in palliative care settings. Incorporating both objective parameters and the subjective index may improve the prediction accuracy of prognosis.
CONTEXT: It is essential to evaluate good death of patients with cancer. However, currently, there is no validated measurement tool available in Mainland China.
OBJECTIVES: To validate the Chinese version of the Good Death Inventory (GDI).
METHODS: An online survey was distributed to the bereaved family members of patients with cancer (from 10 medical institutes) who died between January 2014 and December 2016. The survey included the demographic characteristics of the patients and their family members, the Chinese version of the GDI, overall satisfaction of family members regarding the end-of-life care, as well as the patients' overall quality of death and dying, and overall quality of life.
RESULTS: A total of 305 valid responses were analyzed. The average score of the GDI was 241.2. The overall Cronbach's α coefficient of the GDI was 0.896 (range: 0.561-0.950) for the subdomains. The fit indices for the original 18-factor model were acceptable: root-mean-square error of approximation=0.044, Comparative Fit Index=0.900, Tucker-Lewis Index=0.892, and standardized root mean square residual=0.073. The overall scores of the GDI were moderately correlated with overall satisfaction with medical care (r=0.411, P<0.01), patient's quality of life (r=0.468, P<0.01), and quality of death and dying (r=0.441, P<0.01).
CONCLUSIONS: The psychometric characteristics of the Chinese version of the GDI indicate that this questionnaire is reliable and valid. It can be used as a tool for the assessment of quality of death and dying of patients with cancer among the Chinese population.