scholarly journals PTH-48 Patients’ perspectives of palliative and end-of-life care in advanced liver disease: Systematic review of literature

2021 ◽  
Author(s):  
Debasish Das ◽  
M Ali ◽  
IA Hussain ◽  
JTN Ingram ◽  
RS Johnstone ◽  
...  
Keyword(s):  
Systematic Review ◽  
Liver Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Review Of Literature ◽  
Advanced Liver Disease

What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines

2021 ◽  
pp. bmjspcare-2021-003057
Author(s):  
Debasish Das ◽  
Mafas Ali ◽  
Ithsham Ali Hussain ◽  
Josh Thomas Nigel Ingram ◽  
Rachel Sarah Johnstone ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Liver Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Community Support ◽  
Life Care ◽  
Advanced Liver Disease ◽  
End Stage Liver Disease ◽  
End Stage

BackgroundLiver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients’ perspectives even though they are most affected by these guidelines.AimTo explore current knowledge and understanding of patients’ lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease.DesignSystematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.Setting and participantsDatabase searches (Ovid Medline, 1946–2021 and Web of Science, 1970–2021) to identify qualitative studies exploring patients’ perspectives of palliative and end-of-life care in advanced liver disease.FindingsOnly eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected.ConclusionThere is a dearth of studies exploring patients’ perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.

Palliative Sedation in End-of-Life Care and Survival: A Systematic Review

2012 ◽  
Vol 30 (12) ◽  
pp. 1378-1383 ◽  
Author(s):  
Marco Maltoni ◽  
Emanuela Scarpi ◽  
Marta Rosati ◽  
Stefania Derni ◽  
Laura Fabbri ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Randomized Clinical Trials ◽  
Palliative Sedation ◽  
Life Care ◽  
Review Of Literature ◽  
Refractory Symptoms ◽  
Manual Search

Purpose Palliative sedation is a clinical procedure aimed at relieving refractory symptoms in patients with advanced cancer. It has been suggested that sedative drugs may shorten life, but few studies exist comparing the survival of sedated and nonsedated patients. We present a systematic review of literature on the clinical practice of palliative sedation to assess the effect, if any, on survival. Methods A systematic review of literature published between January 1980 and December 2010 was performed using MEDLINE and EMBASE databases. Search terms included palliative sedation, terminal sedation, refractory symptoms, cancer, neoplasm, palliative care, terminally ill, end-of-life care, and survival. A manual search of the bibliographies of electronically identified articles was also performed. Results Eleven published articles were identified describing 1,807 consecutive patients in 10 retrospective or prospective nonrandomized studies, 621 (34.4%) of whom were sedated. One case-control study was excluded from prevalence analysis. The most frequent reason for sedation was delirium in the terminal stages of illness (median, 57.1%; range, 13.8% to 91.3%). Benzodiazepines were the most common drug category prescribed. Comparing survival of sedated and nonsedated patients, the sedation approach was not shown to be associated with worse survival. Conclusion Even if there is no direct evidence from randomized clinical trials, palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, does not seem to have any detrimental effect on survival of patients with terminal cancer. In this setting, palliative sedation is a medical intervention that must be considered as part of a continuum of palliative care.

scholarly journals Music therapy for end-of-life care: An updated systematic review

2016 ◽  
Vol 30 (9) ◽  
pp. 877-883 ◽  
Author(s):  
Tracey McConnell ◽  
David Scott ◽  
Sam Porter
Keyword(s):  
Systematic Review ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals What role do Death Doulas play in end‐of‐life care? A systematic review

2018 ◽  
Vol 27 (3) ◽  
pp. e82-e94 ◽  
Author(s):  
Deb Rawlings ◽  
Jennifer Tieman ◽  
Lauren Miller‐Lewis ◽  
Kate Swetenham
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

13 Exploring patient safety incidents arising from advance care planning for end of life patients: a mixed methods analysis of incident reports

2018 ◽  
Vol 8 (3) ◽  
pp. 364.2-365 ◽  
Author(s):  
Toby Dinnen ◽  
Huw Williams ◽  
Simon Noble ◽  
Adrian Edwards ◽  
Joyce Kenkre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Patient Safety ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Incident Reports ◽  
Patient Safety Incidents

IntroductionAdvance Care Planning (ACP) is an important component of patient centred end-of-life care (Houben et al. 2014; Brinkman-Stoppelenburg et al. 2014). However there is little evidence available on the safety of the process and its impact on quality of care.AimTo characterise the nature of patient safety incidents arising around the ACP process for patients approaching end-of-life.MethodThe National Reporting and Learning System (NRLS) collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports between 2005 and 2015. A mixed methods process combining structured data coding and exploratory descriptive analysis was undertaken to describe incidents underlying causes and outcomes. A thematic analysis identified areas on which to focus improvement initiatives.ResultsWe identified 67 incident reports in which patients experienced inadequate care due to issues with implementation of ACP. The most common source of error was (mis)communication of ACP (n=27) where documentation was lost or verbal handover was inaccurate. Over one third of reports (n=24) described an ACP not being followed. In the remaining reports (n=16) an ACP was not completed despite being appropriate. The most common contributory factor was inadequate staff knowledge (n=18). Common outcomes were cardiopulmonary resuscitation attempts contrary to a patient’s wishes (n=18). Other outcomes included inappropriate treatment or transfer/admission.ConclusionOur national level analysis identifies key priorities which should be explored in local contexts: specifically improving public and staff understanding and engagement with ACP and developing systems for recording and accessing ACP documentation across healthcare services.References. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine2014;28:1000–25.. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association2014;15:477–89.

scholarly journals Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Carlos Gómez-Vírseda ◽  
Yves de Maeseneer ◽  
Chris Gastmans
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Real Life ◽  
Care Ethics ◽  
Relational Autonomy ◽  
Life Care ◽  
Philosophical Foundations ◽  
Respect For Autonomy

Abstract Background Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics. Methods Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced. Results Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations. Conclusions Three main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.

scholarly journals The use of behavioural theories in end-of-life care research: A systematic review

2018 ◽  
Vol 32 (6) ◽  
pp. 1055-1077 ◽  
Author(s):  
Anne-Lore Scherrens ◽  
Kim Beernaert ◽  
Lenzo Robijn ◽  
Luc Deliens ◽  
Nele S Pauwels ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Transtheoretical Model ◽  
End Of Life Care ◽  
Reasoned Action ◽  
Data Extraction ◽  
Life Care ◽  
Care Research ◽  
Behavioural Theories

Background: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context. Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined. Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009). Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories. Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning. Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.

Palliative care for community patients diagnosed with dementia: a systematic review

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Good Practice ◽  
Community Setting ◽  
Life Care ◽  
Staff Support ◽  
The Uk

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.

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