scholarly journals Dying well with dementia: Qualitative examination of end-of-life care

2011 ◽  
Vol 199 (5) ◽  
pp. 417-422 ◽  
Author(s):  
Vanessa Lawrence ◽  
Kritika Samsi ◽  
Joanna Murray ◽  
Danielle Harari ◽  
Sube Banerjee
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Comparison Method ◽  
Life Care ◽  
Care Needs ◽  
People With Dementia ◽  
The Uk ◽  
Bereaved Family ◽  
Cognitively Intact

BackgroundPeople with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.AimsTo define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.MethodIn-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.ResultsThe data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.ConclusionsThe quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

scholarly journals 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

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.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

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.

Managing End-of-Life Care

2012 ◽  
Author(s):  
John W. Albarran ◽  
Marika Hills
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Symptom Relief ◽  
Death And Dying ◽  
Past Century ◽  
Life Care ◽  
Care Needs ◽  
Definition Of ◽  
The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

Palliative and end-of-life care for people with learning disabilities

2019 ◽  
pp. 777-784
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Learning Disability ◽  
End Of Life ◽  
Early Onset ◽  
End Of Life Care ◽  
Life Care ◽  
The World ◽  
The Uk

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

2206Prevalence and determinants of complicated grief in bereaved caregivers of patients admitted for cardiovascular diseases

2019 ◽  
Vol 40 (Supplement_1) ◽  
Author(s):  
K Shinada ◽  
T Kohno ◽  
K Fukuda ◽  
M Higashitani ◽  
N Kawamatsu ◽  
...  
Keyword(s):  
Cardiovascular Diseases ◽  
End Of Life ◽  
Psychological Health ◽  
End Of Life Care ◽  
Cardiopulmonary Arrest ◽  
Tertiary Care ◽  
Complicated Grief ◽  
Life Care ◽  
Bereaved Family

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.

Association between Quality of End-of-Life Care and Possible Complicated Grief among Bereaved Family Members

2014 ◽  
Vol 17 (9) ◽  
pp. 1025-1031 ◽  
Author(s):  
Kaya Miyajima ◽  
Daisuke Fujisawa ◽  
Kimio Yoshimura ◽  
Masaya Ito ◽  
Satomi Nakajima ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Complicated Grief ◽  
Life Care ◽  
Bereaved Family

Quality of end-of-life care for veterans with metastatic cancer and advanced chronic kidney disease.

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
Keyword(s):  
Chronic Kidney Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Metastatic Cancer ◽  
Veterans Affairs ◽  
Life Care ◽  
Advanced Chronic Kidney Disease ◽  
Bereaved Family ◽  
To Receive

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.

scholarly journals Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

Healthcare ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. 27
Author(s):  
Alexandra Pereira ◽  
Amélia Ferreira ◽  
Ana Rita Abrantes ◽  
Cristiana Gomes ◽  
Joana Saraiva ◽  
...  
Keyword(s):  
End Of Life ◽  
Cultural Adaptation ◽  
End Of Life Care ◽  
Northern Region ◽  
Satisfaction With Care ◽  
Global Rating ◽  
Life Care ◽  
Portuguese Version ◽  
Bereaved Family

Background: Satisfaction with care is an important outcome measure in end-of-life care. Validated instruments are necessary to evaluate and disseminate interventions that improve satisfaction with care at the end of life, contributing to improving the quality of care offered at the end of life to the Portuguese population. The purpose of this study was to perform a cross-cultural adaptation and psychometric analysis of the Portuguese version of the CANHELP Lite Bereavement Questionnaire. Methods: Methodological research with an analytical approach that includes translation, semantic, and cultural adaptation. Results: The Portuguese version comprised 24 items. A panel of experts and bereaved family members found it acceptable and that it had face and content validity. A total of 269 caregivers across several care settings in the northern region of Portugal were recruited for further testing. The internal consistency analysis of the adapted instrument resulted in a global alpha value of 0.950. The correlation between the adapted CANHELP questionnaire and a global rating of satisfaction was of 0.886 (p < 0.001). Conclusions: The instrument has good psychometric properties. It was reliable and valid in assessing caregivers’ satisfaction with end-of-life care and can be used in both clinical and research settings.

J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Institutional Review Boards ◽  
Life Care ◽  
Knowledge And Skills ◽  
Bereaved Family ◽  
Care Evaluation

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.

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