scholarly journals Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ayah Nayfeh ◽  
Christopher J. Yarnell ◽  
Craig Dale ◽  
Lesley Gotlib Conn ◽  
Brigette Hales ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Communication Barriers ◽  
Life Care ◽  
Priority Areas ◽  
Location Of Death ◽  
Language Communication ◽  
Care Improvement

Abstract Background Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds. Methods The End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement. Results There were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family. Conclusion Satisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum.

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

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).

Quality of cancer end-of-life care: discordance between bereaved relatives and professional proxies

2020 ◽  
pp. bmjspcare-2019-002108
Author(s):  
Elisabetta Bertocchi ◽  
Giovanna Artioli ◽  
Elisa Rabitti ◽  
Gabriele Bedini ◽  
Silvia Di Leo ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
Correlation Coefficient ◽  
End Of Life Care ◽  
Concordance Correlation Coefficient ◽  
Consecutive Series ◽  
Life Care ◽  
Concordance Correlation ◽  
Poor Agreement

BackgroundQuality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives.AimThis study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients’ death.DesignIn this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin’s concordance correlation coefficient, Cohen’s kappa, overall concordance correlation coefficient and Fleiss’ kappa.Setting/participantsWe enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy.ResultsWe interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; −0.04 to 0.44), between relatives and nurses (+0.05; −0.39 to +0.47), and between relatives and physicians (+0.25; −0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales.ConclusionsThe agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.

Patients' participation in end-of-life care: Relations to different variables as documented in the patients' records

2010 ◽  
Vol 8 (3) ◽  
pp. 247-253 ◽  
Author(s):  
Irma Lindström ◽  
Fannie Gaston-Johansson ◽  
Ella Danielson
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
Cognitive Dysfunction ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Life Care ◽  
High Quality ◽  
Care And Treatment

AbstractObjective:Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables‘ relation to patients’ participation during the last three months in life as documented in patients' records.Method:The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.Results:This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.Significance of results:The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

scholarly journals Associations between Length of Stay in Long Term Care Facilities and End of Life Care. Analysis of the PACE Cross-Sectional Study

2020 ◽  
Vol 17 (8) ◽  
pp. 2742 ◽  
Author(s):  
Danni Collingridge Moore ◽  
Sheila Payne ◽  
Thomas Keegan ◽  
Luc Deliens ◽  
Tinne Smets ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Life Care ◽  
Cross Sectional ◽  
Term Care ◽  
Care Facilities

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the last week of life. Longer stay residents were more likely to have advance directives in place and have a lasting power of attorney for personal welfare. Further research is needed to explore the underlying reasons for this trend, and how good quality end of life care can be provided to all LTCF residents.

Importance of stratification when measuring quality of care: Results from the Project for an Ontario Women's Health Evidence-Based Report Card (POWER) study

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
M. K. Krzyzanowska ◽  
L. Barbera ◽  
L. Elit ◽  
R. Saskin ◽  
N. Yeritsyan ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
Low Income ◽  
End Of Life Care ◽  
Life Care ◽  
Power Study ◽  
Processes Of Care ◽  
Delphi Approach

6573 Background: The goal of the POWER study is to improve health and reduce inequities among women of Ontario using population-based performance measurement. All selected indicators are stratified by sex, age, income and place of residence to determine whether there are disparities in performance associated with these factors. Results pertaining to cancer (CA) indicators are presented. Methods: A modified Delphi approach was used to identify performance measures spanning the disease spectrum from screening through follow-up care and feasible to be evaluated from administrative data. Most recently available data (2003–2005) from the Ontario Cancer Registry, Registered Persons, billing and hospital databases were then used to evaluate the selected measures stratified by above four factors. Results: Twenty-nine cancer-specific indicators were selected by the panel, majority of which related to processes of care: general indicators relevant to multiple cancers (3), screening (5), breast CA (5), lung CA (3), colorectal CA (4), gynecologic CA (4), and end-of-life care (5). Among measures relating to non-sex specific cancers, few sex-related differences in care were identified. Income-based differences in care were most pronounced among the screening indicators with individuals from low-income neighborhoods less likely to receive appropriate screening or follow-up after an abnormal screening test. Among measures relating to treatment, age was the factor most frequently associated with differences in care especially in regards to radiation- or chemotherapy-related processes of care. There were geographic differences in quality of care within the province along the entire trajectory of cancer care from screening through end-of-life care. Conclusions: Among the cancer quality indicators considered, few sex-based differences exist. However, factors such as age, income and where one lives are important predictors of care underscoring the importance of stratification by such factors when evaluating quality of care. Further work is necessary to determine whether these differences in processes of care affect outcomes and how to facilitate access to care by disadvantaged groups. No significant financial relationships to disclose.

scholarly journals Improving end-of-life care in nursing homes: Implementation and evaluation of an intervention to sustain quality of care

2013 ◽  
Vol 27 (8) ◽  
pp. 772-778 ◽  
Author(s):  
Anne M Finucane ◽  
Barbara Stevenson ◽  
Rhona Moyes ◽  
David Oxenham ◽  
Scott A Murray
Keyword(s):  
Quality Of Care ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Quality of Care for Older Patients with Non-Cancer Diagnoses under the End-of-Life Care Program

2016 ◽  
Vol 2 (1) ◽  
pp. 7-13
Author(s):  
Tang Wing-hang ◽  
◽  
Ma Hon-Ming ◽  
Lee Jenny SW ◽  
Hui Elsie ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Patients ◽  
Care Program ◽  
Life Care

scholarly journals Location of end-of-life care of children with cancer: a systematic review of parent experiences

2021 ◽  
Author(s):  
Michelle Noyes ◽  
Anthony Herbert ◽  
Susan Moloney ◽  
Helen Irving ◽  
Natalie Bradford
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Staff ◽  
Hospital Environment ◽  
Life Care ◽  
Children With Cancer ◽  
Parental Decision Making ◽  
Location Of Death

Objective: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of end-of-life care and death for their child. Results: This review included 15 studies involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included: honouring the child’s wishes, familiarity of home, and parents’ desire to be their child’s primary carer. Preference for location of death in hospital included trust in hospital staff, practical logistics and the safety of the hospital environment.

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