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dc.contributor.authorClarke, Gemmaen
dc.contributor.authorGalbraith, Sarahen
dc.contributor.authorWoodward, Jeremyen
dc.contributor.authorHolland, Anthonyen
dc.contributor.authorBarclay, Stephenen
dc.identifier.citationBMC Medical Ethics 2015, 16:41. doi:10.1186/s12910-015-0034-8en
dc.description.abstractBackground: Some people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team. Methods: A three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process? Results: Decision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: (1) Risks, burdens and benefits; (2) Treatment goals; (3) Normative ethical values; (4) Interested parties. Conclusions: Decision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of ‘who decides’ cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum.
dc.description.sponsorshipThis article presents independent research funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for Cambridgeshire and Peterborough at Cambridgeshire and Peterborough NHS Foundation Trust.
dc.publisherBioMed Central
dc.rightsAttribution 2.0 UK: England & Wales*
dc.subjectDecision-making capacityen
dc.subjectHealthcare decisionsen
dc.subjectArtificial nutritionen
dc.subjectEating and drinking interventionsen
dc.subjectProgressive neurological diseaseen
dc.titleEating and drinking interventions for people at risk of lacking decision-making capacity: Who decides and how?en
dc.description.versionThis is the final version. It was first published by BioMed Central at
prism.publicationNameBMC Medical Ethicsen
dc.contributor.orcidHolland, Anthony [0000-0003-4107-130X]
dc.contributor.orcidBarclay, Stephen [0000-0002-4505-7743]
rioxxterms.typeJournal Article/Reviewen

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Attribution 2.0 UK: England & Wales
Except where otherwise noted, this item's licence is described as Attribution 2.0 UK: England & Wales