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“This Condition isn't Going to get any Better so I can't see why we're Prolonging it”: Risks and Benefits of using Empirical Research to Inform Normative Decisions Concerning End-of-Life Care

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cam.issuedOnline2019-02-21
cam.orpheus.successThu Jan 30 10:52:31 GMT 2020 - Embargo updated
dc.contributor.authorFistein, E
dc.contributor.authorClarke, G
dc.contributor.authorHolland, A
dc.contributor.authorBarclay, S
dc.contributor.orcidFistein, Elizabeth [0000-0001-6640-9261]
dc.contributor.orcidHolland, Anthony [0000-0003-4107-130X]
dc.contributor.orcidBarclay, Stephen [0000-0002-4505-7743]
dc.date.accessioned2019-01-11T00:31:02Z
dc.date.available2019-01-11T00:31:02Z
dc.date.issued2018-07-03
dc.description.abstractProgressive neurological diseases are often complicated by declining cognitive function (leading to impaired decision-making capacity) in addition to the physical impairments which have significant emotional and social consequences. Options for managing the later stages vary from invasive medical procedures, palliative care, and (in some jurisdictions) assisted suicide or euthanasia. Decisions about the right approach to take may be influenced by facts about the likely effectiveness of treatment. However, moral questions, such as the right balance between preserving life and maximising quality of life, are an inherent part of the care-planning process. This paper takes nutritional support as an example of one area of decision-making that needs to be addressed during care-planning for people with progressive neurological disease. It describes research into the way in which the values of practitioners, members of the public and people with lived experience of progressive neurological disease may influence their decision-making about the right approach to maintaining nutritional intake during end -of-life care; and discusses some of the challenges of incorporating such findings into normative frameworks.
dc.description.sponsorshipDunhill Trust
dc.identifier.doi10.17863/CAM.35120
dc.identifier.eissn2331-253X
dc.identifier.issn2331-2521
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/287805
dc.language.isoeng
dc.publisherInforma UK Limited
dc.publisher.urlhttp://dx.doi.org/10.1080/23312521.2018.1493959
dc.subject4203 Health Services and Systems
dc.subject50 Philosophy and Religious Studies
dc.subject42 Health Sciences
dc.subject5001 Applied Ethics
dc.subjectBehavioral and Social Science
dc.subjectBasic Behavioral and Social Science
dc.subjectNeurodegenerative
dc.subjectNeurosciences
dc.subjectMental Health
dc.subject8.3 Policy, ethics, and research governance
dc.subject7.1 Individual care needs
dc.subject7.2 End of life care
dc.subjectNeurological
dc.subjectGeneric health relevance
dc.title“This Condition isn't Going to get any Better so I can't see why we're Prolonging it”: Risks and Benefits of using Empirical Research to Inform Normative Decisions Concerning End-of-Life Care
dc.typeArticle
dcterms.dateAccepted2018-06-18
prism.endingPage297
prism.issueIdentifier3
prism.publicationDate2018
prism.publicationNameJournal of Disability and Religion
prism.startingPage283
prism.volume22
pubs.funder-project-idThe Dunhill Medical Trust (None)
rioxxterms.licenseref.startdate2018-07-03
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.typeJournal Article/Review
rioxxterms.versionAM
rioxxterms.versionofrecord10.1080/23312521.2018.1493959

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