End-of-life decision-making of terminally ill cancer patients in a tertiary cancer center in Shanghai, China

Gu, Xihui; Chen, Menglei; Liu, Minghui; Zhang, Zhe; Cheng, Wenwu

doi:10.1007/s00520-015-3017-x

Cited by 39 publications

(47 citation statements)

References 31 publications

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“…For instance, the need for autonomy is commonly culture-related [ 36 ]. Family members usually make decisions for patients in eastern cultures because family-collective decision-making is much more popular there than in other cultures [ 77 ]. This result showed the importance of developing tailored healthcare services or interventions based on context-specific unmet needs.…”

Section: Discussionmentioning

confidence: 99%

Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

et al. 2018

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BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1–84.4%), fatigue (18–76.3%), and “being informed about benefits and side-effects of treatment” (4–66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26–100%) and care-related information (21–100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

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Section: Discussionmentioning

confidence: 99%

Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

et al. 2018

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“…As mentioned in previous studies [4,5,14], DNR discussions and proxy decision-making of DNR consent is emotional, stressful and overwhelming for terminal patients and their families. In Asian cultures, making a decision to withhold or withdraw life-sustaining treatment from a close family member may feel unfilial or unaffectionate.…”

Section: Discussionmentioning

confidence: 99%

The Association between End-of-Life Care and the Time Interval between Provision of a Do-Not-Resuscitate Consent and Death in Cancer Patients in Korea

et al. 2017

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PurposeWe explored the relationship between the use of each medical intervention and the length of time between do-not-resuscitate (DNR) consent and death in Korea.Materials and MethodsA total of 295 terminal cancer patients participated in this retrospective study. Invasive interventions (e.g., cardiopulmonary resuscitation, intubation, and hemodialysis), less invasive interventions (e.g., transfusion, antibiotic use, inotropic use, and laboratory tests), and the time interval between the DNR order and death were evaluated. The subjects were divided into three groups based on the amount of time between DNR consent and death (G1, time interval ≤ 1 day; G2, time interval > 1 day to ≤ 3 days; and G3, time interval > 3 days).ResultsIn general, there were fewer transfusions and laboratory tests near death. Invasive interventions tended to be implemented only in the G1 group. There was also less inotrope use and fewer laboratory tests in the G3 group than G1 and G2. Moreover, the G3 group received fewer less invasive interventions than those in G1 (odds ratio [OR], 0.16; 95% confidence interval [CI], 0.03 to 0.84; 3 days before death, and OR, 0.16; 95% CI, 0.04 to 0.59; the day before death). The frequency of less invasive interventions both 1 and 3 days before death was significantly lower for the G3 group than the G1 (p ≤ 0.001) and G2 group compared to G1 (p=0.001).ConclusionEarlier attainment of DNR permission was associated with reduced use of medical intervention. Thus, physicians should discuss death with terminal cancer patients at the earliest practical time to prevent unnecessary and uncomfortable procedures and reduce health care costs.

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“…Cancer caregivers are defined as individuals (e.g., spouses, adult offspring, parents and friends) who devote a significant amount of time and energy to take care of their loved ones who have been diagnosed with cancer (Kent et al, ). In China, cancer caregivers provide various practical support to the patient, including day‐to‐day physical and psychological care, assisting with medical decision‐making, communication with healthcare staff, searching for information and solving financial issues (Cui, Song, Zhou, Meng, & Zhao, ; Gu, Chen, Liu, Zhang, & Cheng, ; Xie, Su, Liu, Wang, & Zhang, ; Yang et al, ; Zhang, Xie, Xie, & Liu, ). Consequently, cancer caregivers often experience a number of negative physical and psychological burdens, including reduced quality of life (QOL; Applebaum & Breitbart, ; Bevans & Sternberg, ; Lapid et al, ; Stenberg, Ruland, & Miaskowski, ; Yang et al, ), as a result of their caregiving duties.…”

Section: Introductionmentioning

confidence: 99%

Chinese version of the Cancer Support Person’s Unmet Needs Survey-Sort Form: A psychometric study

et al. 2018

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Objective Psychometrically rigorous and comprehensive needs assessment measures for Chinese general cancer caregivers are relatively scarce. We described the development and psychometric evaluation of the Chinese version of the Cancer Support Person's Unmet Needs Survey‐Short Form (SPUNS‐SFC). Methods A forward–backward translation method was utilised to develop the SPUNS‐SFC. The construct validity, internal consistency, convergent validity and discriminant validity of the SPUNS‐SFC were evaluated. Results A total of 1,026 Chinese cancer caregivers completed the SPUNS‐SFC. Items 10, 11, 13, 24 and 26 were removed as more than 80% of respondents reported having no unmet needs on these items. Exploratory factor analysis revealed a five‐factor structure, which accounted for 78.47% of the total variance, and consisted of the following domains: information, healthcare access and continuity, personal and emotional needs, worries about the future, and financial needs. Internal consistency of the measure was high, with Cronbach's alpha coefficients ranging from 0.87 to 0.95 for the five domains. The measure illustrated adequate evidence of convergent validity, demonstrated by significant correlations with multiple measures of psychological well‐being. Known‐groups validity was established, as 87.5% of the hypotheses were supported. Conclusion This study indicates the SPUNS‐SFC is a reliable and valid measure of the unmet needs of Chinese cancer caregivers.

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End-of-life decision-making of terminally ill cancer patients in a tertiary cancer center in Shanghai, China

Abstract: This study reflected some Chinese characteristics for decision-making at the end of life among advanced cancer patients. More prospective studies focused on specific EOL issues are required to improve the quality of EOL care.

Cited by 39 publications

References 31 publications

Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

The Association between End-of-Life Care and the Time Interval between Provision of a Do-Not-Resuscitate Consent and Death in Cancer Patients in Korea

Chinese version of the Cancer Support Person’s Unmet Needs Survey-Sort Form: A psychometric study

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