scholarly journals Bereaved family members’ perceptions of the quality of end-of-life care across four types of inpatient care settings

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Kelli Stajduhar ◽  
Richard Sawatzky ◽  
S. Robin Cohen ◽  
Daren K. Heyland ◽  
Diane Allan ◽  
...  
2014 ◽  
Vol 17 (9) ◽  
pp. 1025-1031 ◽  
Author(s):  
Kaya Miyajima ◽  
Daisuke Fujisawa ◽  
Kimio Yoshimura ◽  
Masaya Ito ◽  
Satomi Nakajima ◽  
...  

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.


2011 ◽  
Vol 27 (4) ◽  
pp. 261-269 ◽  
Author(s):  
Kelli I. Stajduhar ◽  
Laura Funk ◽  
S. Robin Cohen ◽  
Allison Williams ◽  
Darcee Bidgood ◽  
...  

2010 ◽  
Vol 39 (3) ◽  
pp. 502-506 ◽  
Author(s):  
Eve M. Block ◽  
David J. Casarett ◽  
Carol Spence ◽  
Pedro Gozalo ◽  
Stephen R. Connor ◽  
...  

2008 ◽  
Vol 26 (23) ◽  
pp. 3845-3852 ◽  
Author(s):  
Mitsunori Miyashita ◽  
Tatsuya Morita ◽  
Kei Hirai

Surveying bereaved family members could enhance the quality of end-of-life cancer care in inpatient palliative care units (PCUs). We systematically reviewed nationwide postbereavement studies of PCUs in Japan and attempts to develop measures for evaluating end-of-life care from the perspective of bereaved family members. The Care Evaluation Scale (CES) for evaluating the structures and processes of care, and the Good Death Inventory (GDI) for evaluating the outcomes of care were considered suitable methods. We applied a shortened version of the CES to three nationwide surveys from 2002 to 2007. We developed the CES as an instrument to measure the structures and processes of care and the GDI as an outcomes measure for end-of-life cancer care from the perspective of bereaved family members. We conducted three nationwide surveys in 1997, 2001, and 2007 (n = 850, 853, and 5,301, respectively). Although six of the 10 areas of the CES showed significant improvements between the two time points investigated, we identified considerable potential for further progress. Feedback from surveys of bereaved family members might help to improve the quality of end-of-life cancer care in inpatient PCUs. However, the effectiveness of feedback procedures remains to be confirmed. Furthermore, there is a need to extend the ongoing evaluation process to home care hospices and general hospitals, including cancer centers, identify the limitations of end-of-life care in all settings, and develop strategies to overcome them.


Author(s):  
Ravi B. Parikh ◽  
Oreofe Odejide

The chapter describes the study by Wright and colleagues examining the impact of aggressive cancer care on bereaved family members’ perceptions of end-of-life care. Family members of patients with advanced-stage lung or colorectal cancer were interviewed after their loved ones died to elicit perceptions of care. This chapter presents family-member reported rating of quality of end-of-life care and the association of such rating with aggressive cancer care, including intensive care unit admission within 30 days of death, and no hospice or late hospice admission. It also reviews family members’ perception of whether patients received end-of-life care that was concordant with their wishes. This chapter highlights the downstream impact of aggressive cancer care on family members and the resulting implications for end-of-life care.


Critical Care ◽  
2021 ◽  
Vol 25 (1) ◽  
Author(s):  
Siew Tzuh Tang ◽  
Chung-Chi Huang ◽  
Tsung-Hui Hu ◽  
Wen-Chi Chou ◽  
Li-Pang Chuang ◽  
...  

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.


2012 ◽  
Vol 38 (10) ◽  
pp. 49-60 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Susan E. McClement ◽  
Verena H. Menec ◽  
Harvey M. Chochinov

2019 ◽  
Vol 40 (Supplement_1) ◽  
Author(s):  
K Shinada ◽  
T Kohno ◽  
K Fukuda ◽  
M Higashitani ◽  
N Kawamatsu ◽  
...  

Abstract Introduction Few studies have examined complicated grief in bereaved caregivers of patients with cardiovascular diseases (CVD), in contrast with studies in caregivers of patients with cancers. We examined the prevalence and determinants of complicated grief among bereaved caregivers of patients with CVD. Methods We conducted a cross-sectional survey using a self-administered questionnaire for bereaved family members of CVD patients who had died in the cardiology departments of 9 tertiary care centers in Japan. We assessed bereaved caregiver grief status using the Brief Grief Questionnaire (BGQ), and its association with their depression (Patient Health Questionnaire-9 [PHQ-9]). Questionnaire also covered following associated factors: bereaved family member and patient characteristics, end-of-life care (Care Evaluation Scale [CES], a scale for assessment of the structure and process of care); and the quality of the deceased patients' death (Good Death Inventory [GDI]). Results A total of 269 bereaved caregivers (mean age, 64±12 years; 35% male) of patients with CVD (heart failure n=155 myocardial infarction n=32, cardiopulmonary arrest n=15, arrhythmia n=8, and others n=59) were enrolled in the study. Overall, 14.1% of the bereaved caregivers had complicated grief (BGQ≥8), 32.3% had subthreshold complicated grief (BGQ=5–7), and 13.3% had depression (PHQ-9≥10). Bereaved caregivers with complicated grief frequently developed depression (58% vs. 6%, p<0.001). Among the bereaved caregivers with complicated grief, the assessment of end-of-life care was worse (CES score: 28 [21–40] vs. 23 [19–39], p=0.04), and the assessment of the deceased patients' quality of death tended to be worse (GDI score: 4.0 [3.0–4.8] vs. 4.3 [3.7–4.9], p=0.05). The cause of admission as well as preferences of the patient and family (e.g., treatment [focusing on extending life vs. relieving discomfort], desire for information, place of end-of-life) were not associated with the prevalence of complicated grief. The prevalence of complicated grief was associated with loss of a spouse, poor psychological health during the deceased patients' admission, and poor preparation for the patient's imminent death (all p<0.05). Bereaved caregivers with complicated grief had experienced more decisional burdens regarding the deceased patients' treatment (55% vs. 25%, p=0.001). Notably, 64% of bereaved caregivers with complicated grief were not treated (i.e., neither routine follow-up by psychiatrists/psychotherapist nor prescription for anti-depressants/tranquilizers). Conclusions The prevalence of complicated grief of bereavement was 14.0%. When subthreshold complicated grief was included, the prevalence of complicated grief increased to include half of the caregivers; therefore, routine screening of the bereaved could be recommended. Clinicians should pay particular attention to bereaved families with high risk factors to identify those at risk for future development of complicated grief.


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