Next of Kin Perceptions of End of Life Care: An Investigation of Open-Ended Survey Responses to the VA’s Bereaved Family Survey (GP738)

2020 ◽  
Vol 60 (1) ◽  
pp. 268
Author(s):  
Caroline Gray ◽  
Maria Yefimova ◽  
Matthew McCaa ◽  
Joy Goebel ◽  
Scott Shreve ◽  
...  
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.


2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.


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.


2014 ◽  
Vol 17 (9) ◽  
pp. 1025-1031 ◽  
Author(s):  
Kaya Miyajima ◽  
Daisuke Fujisawa ◽  
Kimio Yoshimura ◽  
Masaya Ito ◽  
Satomi Nakajima ◽  
...  

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18281-e18281
Author(s):  
Shakira Jeanene Grant ◽  
Claire A Richards ◽  
Nicholas Burwick ◽  
Paul L Hebert ◽  
Ann A O'Hare

e18281 Background: Patients with cancer receive less aggressive interventions and higher quality end-of-life care than those with advanced chronic kidney disease (ACKD). However, the relationship between ACKD and cancer and patterns and quality of end-of-life care is poorly understood. Methods: Among a retrospective cohort of all patients with ACKD (estimated glomerular filtration rate < 20 mL/min/1.73m2) who died in Veterans Affairs facilities between 2009-2015 ( N = 9993), we compared dialysis treatment patterns, end-of-life care and family rated quality of care among those who did and did not have a diagnosis of metastatic cancer during the year before death. Data sources included Veterans Affairs clinical and administrative data, Medicare claims, and the United States Renal Data System registry. Family ratings of end-of-life care were based on responses to the Bereaved Family Survey (BFS). We fit logistic regression models and converted the coefficients to predicted probabilities Results: Overall, 1,237(12.4%) patients had a diagnostic code for metastatic cancer during the year before death. These patients were less likely than other patients to have been treated with dialysis before death. In analyses adjusted for patient characteristics and dialysis receipt, patients with metastatic cancer were less likely than other patients to receive intensive procedures (predicted probability: 18.2% vs. 36.2%) and to be admitted to the intensive care unit (ICU) within 30 days of death (30.7% vs. 50.1 %), or die in the ICU (16.2% vs. 33%). These patients were also more likely to receive a palliative care consultation within 90 days of death (46.6% vs. 37%) and to have hospice services at the time of death (55.3% vs. 33.4 %). Family-rated overall quality of care was higher for those with metastatic cancer (59.6% vs. 54.1%). Family members of patients with metastatic cancer also provided more favorable ratings for five individual BFS items including provider listening, informational, emotional support before death and pain control. All comparisons were statistically significant (i.e., P < 0.05). Conclusions: Within a national cohort of US Veterans with ACKD, the presence of metastatic cancer was associated with less dialysis utilization, less intensive medical care, and significantly higher bereaved family ratings of end-of-life care.


2006 ◽  
Vol 20 (5) ◽  
pp. 541-547 ◽  
Author(s):  
Sheila Hawker ◽  
Chris Kerr ◽  
Sheila Payne ◽  
David Seamark ◽  
Carol Davis ◽  
...  

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