Quality Indicators of End-of-Life Cancer Care from the Bereaved Family Members' Perspective in Japan

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.

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Identifying Potential Indicators of the Quality of End-of-Life Cancer Care From Administrative Data

Journal of Clinical Oncology ◽

10.1200/jco.2003.03.059 ◽

2003 ◽

Vol 21 (6) ◽

pp. 1133-1138 ◽

Cited By ~ 489

Author(s):

Craig C. Earle ◽

Elyse R. Park ◽

Bonnie Lai ◽

Jane C. Weeks ◽

John Z. Ayanian ◽

...

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Quality Indicators ◽

Administrative Data ◽

Cancer Care ◽

Symptom Control ◽

Family Members ◽

Data Systems ◽

Delphi Approach

Purpose: To explore potential indicators of the quality of end-of-life services for cancer patients that could be monitored using existing administrative data. Methods: Quality indicators were identified and assessed by literature review for proposed indicators, focus groups with cancer patients and family members to assess candidate indicators and generate new ideas, and an expert panel ranking the meaningfulness and importance of each potential indicator using a modified Delphi approach. Results: There were three major concepts of poor quality of end-of-life cancer care that could be examined using currently-available administrative data (such as Medicare claims): institution of new anticancer therapies or continuation of ongoing treatments very near death; a high number of emergency room visits, inpatient hospital admissions, or intensive care unit days near the end of life; and a high proportion of patients never enrolled in hospice, only admitted in the last few days of life, or dying in an acute-care setting. Concepts such as access to psychosocial and other multidisciplinary services and pain and symptom control are important and may eventually be feasible, but they cannot currently be applied in most data systems. Indicators based on limiting the use of treatments with low probability of benefit or indicators based on economic efficiency were not acceptable to patients, family members, or physicians. Conclusion: Several promising claims-based quality indicators were identified that, if found to be valid and reliable within data systems, could be useful in identifying health-care systems in need of improving end-of-life services.

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Family Perspectives on Aggressive End-of-Life Care (DRAFT)

10.1093/med/9780190658618.003.0042 ◽

2018 ◽

Author(s):

Ravi B. Parikh ◽

Oreofe Odejide

Keyword(s):

End Of Life ◽

Cancer Care ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Aggressive Cancer ◽

Care Family ◽

Bereaved Family ◽

The Impact

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.

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Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Critical Care ◽

10.1186/s13054-021-03719-x ◽

2021 ◽

Vol 25 (1) ◽

Author(s):

Siew Tzuh Tang ◽

Chung-Chi Huang ◽

Tsung-Hui Hu ◽

Wen-Chi Chou ◽

Li-Pang Chuang ◽

...

Keyword(s):

Social Support ◽

Posttraumatic Stress ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Ptsd Symptoms ◽

Icu Patients ◽

Clinically Significant ◽

Bereaved Family

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.

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