"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

Progressive 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 pr...

Full description

Saved in:  
Bibliographic Details
Published in:Journal of disability & religion
Authors: Fistein, Elizabeth (Author) ; Barclay, Stephen (Author) ; Clarke, Gemma (Author) ; Holland, Anthony (Author)
Format: Electronic Article
Language:English
Check availability: HBZ Gateway
Journals Online & Print:
Drawer...
Fernleihe:Fernleihe für die Fachinformationsdienste
Published: Taylor & Francis [2018]
In: Journal of disability & religion
Further subjects:B empirical ethics
B clinically assisted nutrition
B Palliative Care
B Euthanasia
Online Access: Presumably Free Access
Volltext (Resolving-System)

MARC

LEADER 00000caa a22000002 4500
001 1663287066
003 DE-627
005 20190619131149.0
007 cr uuu---uuuuu
008 190416s2018 xx |||||o 00| ||eng c
024 7 |a 10.1080/23312521.2018.1493959  |2 doi 
035 |a (DE-627)1663287066 
035 |a (DE-599)KXP1663287066 
040 |a DE-627  |b ger  |c DE-627  |e rda 
041 |a eng 
084 |a 0  |2 ssgn 
100 1 |a Fistein, Elizabeth  |e VerfasserIn  |4 aut 
245 1 0 |a "This Condition isn't Going to get any Better so I can't see why we're Prolonging it"  |b Risks and Benefits of using Empirical Research to Inform Normative Decisions Concerning End-of-Life Care  |c Elizabeth Fistein 
264 1 |c [2018] 
336 |a Text  |b txt  |2 rdacontent 
337 |a Computermedien  |b c  |2 rdamedia 
338 |a Online-Ressource  |b cr  |2 rdacarrier 
520 |a Progressive 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 maximizing 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. 
650 4 |a Palliative Care 
650 4 |a clinically assisted nutrition 
650 4 |a empirical ethics 
650 4 |a Euthanasia 
700 1 |a Barclay, Stephen  |e VerfasserIn  |4 aut 
700 1 |a Clarke, Gemma  |e VerfasserIn  |4 aut 
700 1 |a Holland, Anthony  |e VerfasserIn  |4 aut 
773 0 8 |i Enthalten in  |t Journal of disability & religion  |d Philadelphia, Pa. : Taylor & Francis, 2014  |g 22(2018), 3, Seite 283-297  |h Online-Ressource  |w (DE-627)790615509  |w (DE-600)2777009-6  |w (DE-576)40970038X  |x 2331-253X  |7 nnns 
773 1 8 |g volume:22  |g year:2018  |g number:3  |g pages:283-297 
856 |u https://www.repository.cam.ac.uk/handle/1810/287805  |x unpaywall  |z Vermutlich kostenfreier Zugang  |h repository [oa repository (via OAI-PMH title and first author match)] 
856 4 0 |u https://doi.org/10.1080/23312521.2018.1493959  |x Resolving-System  |3 Volltext 
936 u w |d 22  |j 2018  |e 3  |h 283-297 
951 |a AR 
ELC |a 1 
ITA |a 1  |t 1 
LOK |0 000 xxxxxcx a22 zn 4500 
LOK |0 001 3422531343 
LOK |0 003 DE-627 
LOK |0 004 1663287066 
LOK |0 005 20190416101829 
LOK |0 008 190416||||||||||||||||ger||||||| 
LOK |0 040   |a DE-Tue135  |c DE-627  |d DE-Tue135 
LOK |0 092   |o n 
LOK |0 852   |a DE-Tue135 
LOK |0 852 1  |9 00 
LOK |0 935   |a ixzs  |a ixzo 
OAS |a 1 
ORI |a SA-MARC-ixtheoa001.raw 
REL |a 1 
SUB |a REL