Awareness contexts revisited: indeterminacy in initiating discussions at the end‐of‐life

Richards, Naomi; Ingleton, Christine; Gardiner, Clare; Gott, Merryn

doi:10.1111/jan.12151

Cited by 27 publications

(41 citation statements)

References 35 publications

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“…25,113,114 However, as Thé et al 113 note, if patients remain unaware of their prognosis, they cannot plan. In this study, lung cancer patients who insisted on maintaining a 'recovery story' eventually confronted a difficult situation and found themselves unable to adjust or prepare for their impending death.…”

Section: Preferred Place Of Deathmentioning

confidence: 99%

“…The language of 'choice' and autonomy -precedent or otherwise -does not sit easily, nor does it appear to carry salience, for many patients and families confronting death and dying. 25,69,81,190 'Choice' in EOLC turns out to be largely illusory, and may be troubling for many patients. However, it has a tremendous symbolic significance as a means of maintaining agency in the face of death.…”

Section: Helping Patients To Prepare For Deathmentioning

confidence: 99%

“…However, a growing body of qualitative evidence gives an indication of the great complexity, ambivalence and variability of patients' desire to engage in ACP, and their responses to professional invitations to do so. 12,25,67,69,81,88,94,98,122 BACKGROUND NIHR Journals Library www.journalslibrary.nihr.ac.uk…”

Section: 114mentioning

confidence: 99%

“…24,25 Although the Liverpool Care Pathway (LCP) for EOLC was introduced to implement a palliative approach towards the care of dying patients in hospital and community care settings, 26 its widespread misapplication, and frequent reduction to a tick-box exercise rather than a holistic programme of care, has resulted in its withdrawal from service. Difficulties of communication between clinicians and patients and their families were identified as being a major contribution to the pathway's demise.…”

Section: Introductionmentioning

confidence: 99%

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Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Pollock

Wilson

2015

Health Serv Deliv Res

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(2015) Care and communication between health professionals and patients affected by severe or chronic illness in community settings: a qualitative study of care at the end of life. Health Services Delivery and Research, 3 (31). ISSN 2050-4349 Access from the University of Nottingham repository: http://eprints.nottingham.ac.uk/35464/2/FullReport-hsdr03310.pdf Copyright and reuse:The Nottingham ePrints service makes this work by researchers of the University of Nottingham available open access under the following conditions. This article is made available under the Creative Commons Attribution Non-commercial licence and may be reused according to the conditions of the licence. For more details see: http://creativecommons.org/licenses/by-nc/2.5/ A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription.For more information, please contact eprints@nottingham.ac.uk This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/). HEALTH SERVICES AND DELIVERY RESEARCHEditorial contact: nihredit@southampton.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 10/2002/23. The contractual start date was in April 2012. The final report began...

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Section: Preferred Place Of Deathmentioning

confidence: 99%

Section: Helping Patients To Prepare For Deathmentioning

confidence: 99%

Section: 114mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Pollock

Wilson

2015

Health Serv Deliv Res

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“…Young people were assessed as being aware of their parent's prognosis, albeit research indicates that people at the end of life and their family members may move in and 6 out of a state of awareness as a means of coping with a life-limiting illness (Copp & Field 2002;Richards et al 2013). …”

Section: Study Design and Settingmentioning

confidence: 99%

Young people's perspectives on open communication between family members when a parent is dying

Turner

2017

Pall Supp Care

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Nurses' experience with relatives of patients receiving end‐of‐life care in nursing homes and at home: A questionnaire‐based cross‐sectional study

2018

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AimThe aim of this study was to explore any differences between nurses working in nursing home and home‐based care in their experiences regarding relatives' ability to accept the imminence of death and relatives' ability to reach agreement when deciding on behalf of patients unable to consent.DesignAn electronic questionnaire‐based cross‐sectional study.MethodAn electronically distributed survey to 884 nurses in long‐term care in Norway in May 2014. A total of 399 nurses responded (45%), of which 197 worked in nursing homes and 202 in home‐based care.ResultsNurses in home‐based care, more often than their colleagues in nursing homes, experienced that relatives had difficulties in accepting that patients were dying. Nurses who often felt insecure about whether life extension was in consistency with patients' wishes and nurses who talked most about life‐prolonging medical treatment in communication with relatives more often experienced that relatives being reluctant to accept a poor prognosis and disagreements between relatives in their role as proxy decision makers for the patient.

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Awareness contexts revisited: indeterminacy in initiating discussions at the end‐of‐life

Abstract: Philosophy and policy aside, people do not always conform to the autonomy paradigm of a self-directed life followed by a self-directed death.

Cited by 27 publications

References 35 publications

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Young people's perspectives on open communication between family members when a parent is dying

Nurses' experience with relatives of patients receiving end‐of‐life care in nursing homes and at home: A questionnaire‐based cross‐sectional study

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