The known unknowns of assisted hydration at the end of life

2021 ◽  
Vol 26 (6) ◽  
pp. 284-285
Author(s):  
Arjun Kingdon ◽  
Anna Spathis ◽  
Ben Bowers ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Shared Decision ◽  
Life Care ◽  
High Quality ◽  
Home Setting ◽  
Known Unknowns ◽  
The Impact

Much is unknown about assisted hydration at the end of life: why rates of usage vary so highly between institutions, cultures and countries, what beneficial or burdensome effects this treatment has, whether there is a place for subcutaneous hydration in the home setting, and how best to communicate about this difficult topic with dying people and their families. In light of a recently published systematic review concerning the impact of assisted hydration at the end of life, this article explores these questions and related issues, concluding that individualisation and shared decision-making are essential aspects of high-quality end-of-life care.

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Shared Decision Making ◽  
End Of Life Care ◽  
The United States ◽  
Ethical Framework ◽  
Shared Decision ◽  
Life Care ◽  
Best Interest ◽  
Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

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 Palliative care for people with dementia living at home: A systematic review of interventions

2019 ◽  
Vol 33 (7) ◽  
pp. 726-742 ◽  
Author(s):  
Rose Miranda ◽  
Frances Bunn ◽  
Jennifer Lynch ◽  
Lieve Van den Block ◽  
Claire Goodman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
European Association ◽  
Life Care ◽  
High Quality ◽  
People With Dementia ◽  
Care Outcomes ◽  
Facilitators And Barriers

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.

Does post-registration palliative care education for nurses improve practice? A systematic review

2019 ◽  
Vol 25 (11) ◽  
pp. 552-564 ◽  
Author(s):  
Angela Thavaraj ◽  
Karen Gillett
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Quantitative Data ◽  
Life Care ◽  
Care Education ◽  
Palliative Care Education ◽  
The Impact

Aims: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice? Background: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain. Methods: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018. Findings: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity. Conclusion: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.

scholarly journals End-of-life care preferences of older patients with multimorbidity: protocol of a mixed-methods systematic review

BMJ Open ◽  
2020 ◽  
Vol 10 (7) ◽  
pp. e038682
Author(s):  
Ana Isabel Gonzalez-Gonzalez ◽  
Christine Schmucker ◽  
Julia Nothacker ◽  
Truc Sophia Nguyen ◽  
Maria-Sophie Brueckle ◽  
...  
Keyword(s):  
Social Sciences ◽  
Systematic Review ◽  
Decision Making ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Patients ◽  
Citation Index ◽  
Life Care ◽  
Social Sciences Citation Index

IntroductionEnd-of-life care is an essential task performed by most healthcare providers and often involves decision-making about how and where patients want to receive care. To provide decision support to healthcare professionals and patients in this difficult situation, we will systematically review a knowledge cluster of the end-of-life care preferences of older patients with multimorbidity that we previously identified using an evidence map.Methods and analysisWe will systematically search for studies reporting end-of-life care preferences of older patients (mean age ≥60) with multimorbidity (≥2 chronic conditions) in MEDLINE, CINAHL, PsycINFO, Social Sciences Citation Index, Social Sciences Citation Index Expanded, PSYNDEX and The Cochrane Library from inception to September 2019. We will include all primary studies that use quantitative, qualitative and mixed methodologies, irrespective of publication date and language.Two independent reviewers will assess eligibility, extract data and describe evidence in terms of study/population characteristics, preference assessment method and end-of-life care elements that matter to patients (eg, life-sustaining treatments). Risk of bias/applicability of results will be independently assessed by two reviewers using the Mixed-Methods Appraisal Tool. Using a convergent integrated approach on qualitative/quantitative studies, we will synthesise information narratively and, wherever possible, quantitatively.Ethics and disseminationDue to the nature of the proposed systematic review, ethics approval is not required. Results from our research will be disseminated at relevant (inter-)national conferences and via publication in peer-reviewed journals. Synthesising evidence on end-of-life care preferences of older patients with multimorbidity will improve shared decision-making and satisfaction in this final period of life.PROSPERO registration numberCRD42020151862.

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