Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

Abstract Background International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER). Methods Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10). Results Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. Conclusion The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. Trial registration This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

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Hospital end-of-life care: families’ free-text notes

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-00239 ◽

2020 ◽

pp. bmjspcare-2020-00239

Author(s):

Sandra Kurkowski ◽

Johannes Radon ◽

Annika R Vogt ◽

Martin Weber ◽

Stephanie Stiel ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

End Of Life Care ◽

Qualitative Content Analysis ◽

Free Text ◽

Life Care ◽

Quality Aspects ◽

Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.6573 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. 6573-6573

Author(s):

Philip C Higgins ◽

Holly Gwen Prigerson

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Convergent Validity ◽

Risk Indicator ◽

Life Care ◽

Trauma Symptoms ◽

Prospective Longitudinal Study ◽

Eol Care ◽

Prospective Longitudinal

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

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Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

JAMA Internal Medicine ◽

10.1001/jamainternmed.2016.1200 ◽

2016 ◽

Vol 176 (8) ◽

pp. 1095 ◽

Cited By ~ 152

Author(s):

Melissa W. Wachterman ◽

Corey Pilver ◽

Dawn Smith ◽

Mary Ersek ◽

Stuart R. Lipsitz ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Life Care

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Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

BMC Palliative Care ◽

10.1186/s12904-021-00777-4 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Juanjuan Zhao ◽

Liming You ◽

Hongmei Tao ◽

Frances Kam Yuet Wong

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Mainland China ◽

Chinese Version ◽

Life Care ◽

Quality Of Dying ◽

Bereaved Family ◽

Quality Of Structure ◽

Care Evaluation

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.

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Shortening the Frommelt Attitude Toward the Care Of the Dying Scale (FATCOD-B): a Brief 9-Item Version for Medical Education and Practice

Journal of Cancer Education ◽

10.1007/s13187-021-02020-3 ◽

2021 ◽

Author(s):

Giorgia Molinengo ◽

Barbara Loera ◽

Marco Miniotti ◽

Paolo Leombruni

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Rating Scale ◽

Assessment Tools ◽

Scale Model ◽

Theory Approach ◽

Fit Indices ◽

Life Care ◽

Care Training ◽

Care Of The Dying

AbstractEnd-of-life care training has gaps in helping students to develop attitudes toward caring for the dying. Valid and reliable assessment tools are essential in building effective educational programmes. The Frommelt Attitude Toward the Care Of the Dying scale (FATCOD-B) is widely used to measure the level of comfort/discomfort in caring for the dying and to test the effectiveness of end-of-life care training. However, its psychometric properties have been questioned and different proposals for refinement and shortening have been put forward. The aim of this study is to get to a definitive reduction of the FATCOD-B through a valid and parsimonious synthesis of the previous attempts at scale revision. Data were gathered from a sample of 220 medical students. The item response theory approach was used in this study. Of the 14 items selected from two previous proposals for scale revision, 3 had a weak correlation with the whole scale and were deleted. The resulting 11-item version had good fit indices and withstood a more general and parsimonious specification (rating scale model). This solution was further shortened to 9 items by deleting 2 of 3 items at the same level of difficulty. The final 9-item version was invariant for gender, level of religiosity and amount of experience with dying persons, free from redundant items and able to scale and discriminate the respondents.

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Quality of end-of-life care for Vietnam-era Veterans: Implications for practice and policy

Healthcare ◽

10.1016/j.hjdsi.2020.100494 ◽

2021 ◽

Vol 9 (2) ◽

pp. 100494

Author(s):

Ann Kutney-Lee ◽

Dawn Smith ◽

Hilary Griffin ◽

Daniel Kinder ◽

Joan Carpenter ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Vietnam Era

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Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

Innovation in Aging ◽

10.1093/geroni/igaa057.056 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 17-17

Author(s):

Yifan Lou ◽

Nan Jiang ◽

Katherine Ornstein

Keyword(s):

Quality Of Life ◽

Older Adults ◽

End Of Life ◽

End Of Life Care ◽

The United States ◽

Life Care ◽

Person Centered Care ◽

Centered Care ◽

The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

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Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

Innovation in Aging ◽

10.1093/geroni/igaa057.054 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 16-17

Author(s):

Molly Perkins ◽

Ann Vandenberg ◽

Candace Kemp ◽

Mary Ball ◽

Joanna Jungerman ◽

...

Keyword(s):

End Of Life ◽

Informal Care ◽

Caregiver Burden ◽

Assisted Living ◽

End Of Life Care ◽

Life Care ◽

Term Care ◽

Care Partners ◽

Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

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