Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’

Zaman, Shahaduz; Inbadas, Hamilton; Whitelaw, A.; Clark, David

doi:10.1016/j.socscimed.2016.11.012

Cited by 74 publications

(71 citation statements)

References 46 publications

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“…Differences in social and cultural values can be brought to the forefront when confronting medical decision‐making, especially related to end‐of‐life care (Zaman et al, ). In a systematic review of 102 studies, Frost and colleagues concluded that patient and clinician race, ethnicity and nationality are associated with the level of intensity of end‐of‐life ICU treatment.…”

Section: Introductionmentioning

confidence: 52%

Nurses' perceptions of intensive care unit palliative care at end of life

Ganz

Sapir

2018

Nursing in Critical Care

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Background Significant barriers can block the provision of palliative care at the end of life in the intensive care unit (ICU). However, the relationship between perceptions of ICU quality palliative care and barriers to palliative care at the end of life is not well documented. Aims and objectives To describe ICU nurses' perceptions of quality palliative end‐of‐life care, barrier intensity and frequency to palliative care and their association with one another. Design This was a descriptive, correlational, cross‐sectional design. Methods A convenience sample of 126 ICU nurses from two hospitals in Israel was recruited for the study. Participants completed three pencil‐and‐paper questionnaires (a personal characteristics questionnaire, the Quality of Palliative Care in the ICU and a revised Survey of Oncology Nurses' Perceptions of End‐of‐Life Care). Respondents were recruited during staff meetings or while on duty in the ICU. Ethical approval was obtained for the study from participating hospitals. Results The item mean score of the quality of palliative end‐of‐life care was 7·5/10 (SD = 1·23). The item mean barrier intensity and frequency scores were 3·05/5 (SD = 0·76) and 3·30/5 (SD = 0·61), respectively. A correlation of r = 0·46, p < 0·001 was found between barrier frequency and intensity and r = −0·19, p = 0·04 between barrier frequency and quality palliative end‐of‐life care. Conclusions ICU nurses perceived the quality of palliative care at the end of life as moderate despite reports of moderate barrier levels. The frequency of barriers was weakly associated with quality palliative end‐of‐life care. However, barrier intensity did not correlate with quality palliative end‐of‐life care at a statistically significant level. Further research that investigates other factors associated with quality ICU palliative care is recommended. Relevance to clinical practice Barriers to palliative care are still common in the ICU. Increased training and education are recommended to decrease barriers and improve the quality of ICU palliative care.

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Section: Introductionmentioning

confidence: 52%

Nurses' perceptions of intensive care unit palliative care at end of life

Ganz

Sapir

2018

Nursing in Critical Care

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“…A gap in the knowledge of priorities representing those in lower and middleincome countries (LMIC) exists, echoing previous reviews of international palliative care research [66,67]. Whilst there is evidence in this review of engagement, with researchers from high-income regions collaborating and undertaking research in Africa (Powell et al, 2014), a number of researchers [31,67] suggest this raises multi-faceted challenges including the risk of imposing western norms in differing cultural contexts [68]. Therefore, the application of western research priority findings is limited, if not adapted to the specific economic, cultural and specific health care context and constraints of lower-and middle-income countries.…”

Section: What Is Already Known and What Does This Review Addmentioning

confidence: 73%

“…Therefore, the application of western research priority findings is limited, if not adapted to the specific economic, cultural and specific health care context and constraints of lower-and middle-income countries. Zaman et al [31] suggests the need for LMIC to initially develop culturally and locally appropriate research, and then move towards international comparative research.…”

Section: What Is Already Known and What Does This Review Addmentioning

confidence: 99%

“…However, whilst global priorities provide a platform from which to understand the commonalities of palliative care, they underscore the complexity and unique characteristics of the landscape within which palliative care operates. For example, Zaman et al [31] highlights the challenges of transferring ideals of palliative care between developed and developing countries, instead arguing for the need for global common denominators to be identified to enable culturally appropriate provision to be established.…”

Section: Introductionmentioning

confidence: 99%

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International palliative care research priorities: A systematic review

Hasson¹,

Nicholson

Muldrew³

et al. 2020

BMC Palliat Care

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Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. Methods: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

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“…The importance of palliative care interventions to relieve suffering in the context of advanced disease and in the face of death, has gained policy, clinical and academic endorsement worldwide 1, 2 . Beginning in the 1960s with the emergence of new hospice programmes, the modern field of palliative and end of life care grew rapidly in the later decades of the twentieth century and has continued to make progress, attracting wide interest and support, and extending its reach 3 .…”

Section: Introductionmentioning

confidence: 99%

The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England

Seymour¹,

Clark²

2018

Wellcome Open Res

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Background : The Liverpool Care Pathway for the Dying Patient (‘the LCP’) was an integrated care pathway (ICP) recommended by successive governments in England and Wales to improve end-of-life care, using insights from hospice and palliative care. It was discontinued in 2014 following mounting criticism and a national review. The ensuing debate among clinicians polarised between ‘blaming’ of the LCP and regret at its removal. Employing the concept of ‘boundary objects’, we aimed to address three questions: 1) why and how did the LCP come to prominence as a vehicle of policy and practice 2) what factors contributed to its demise? 3) what immediate implications and lessons resulted from its withdrawal? Methods : We use primary and secondary sources in the public domain to assemble a critical and historical review. Results : The rapidity of transfer and translation of the LCP reflected uncritical enthusiasm for ICPs in the early 2000s. The subsequent LCP ‘scandal’ demonstrated the power of social media in creating knowledge, as well as conflicting perceptions about end-of-life interventions. While the LCP had some weaknesses in its formulation and implementation, it became the bearer of responsibility for all aspects of NHS end-of-life care. This was beyond its original remit. It exposed fault lines in the NHS, provided a platform for debates about the ‘evidence’ required to underpin innovations in palliative care and became a conduit of discord about ‘good’ or ‘bad’ practice in care of the dying. It also fostered a previously unseen critique of assumptions within palliative care. Conclusions : In contrast to most observers of the LCP story who refer to the dangers of scaling up clinical interventions without an evidence base, we call for greater assessment of the wider risks and more careful consideration of the unintended consequences that might result from the roll out of new end-of-life interventions.

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Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’

Cited by 74 publications

References 46 publications

Nurses' perceptions of intensive care unit palliative care at end of life

Nurses' perceptions of intensive care unit palliative care at end of life

International palliative care research priorities: A systematic review

The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England

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