Cargando…

Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

BACKGROUND: 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 i...

Descripción completa

Detalles Bibliográficos
Autores principales: Clarke, Gemma, Galbraith, Sarah, Woodward, Jeremy, Holland, Anthony, Barclay, Stephen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462006/
https://www.ncbi.nlm.nih.gov/pubmed/26062801
http://dx.doi.org/10.1186/s12910-015-0034-8
_version_ 1782375592982740992
author Clarke, Gemma
Galbraith, Sarah
Woodward, Jeremy
Holland, Anthony
Barclay, Stephen
author_facet Clarke, Gemma
Galbraith, Sarah
Woodward, Jeremy
Holland, Anthony
Barclay, Stephen
author_sort Clarke, Gemma
collection PubMed
description BACKGROUND: 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.
format Online
Article
Text
id pubmed-4462006
institution National Center for Biotechnology Information
language English
publishDate 2015
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-44620062015-06-11 Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how? Clarke, Gemma Galbraith, Sarah Woodward, Jeremy Holland, Anthony Barclay, Stephen BMC Med Ethics Research Article BACKGROUND: 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. BioMed Central 2015-06-11 /pmc/articles/PMC4462006/ /pubmed/26062801 http://dx.doi.org/10.1186/s12910-015-0034-8 Text en © Clarke et al. 2015 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Clarke, Gemma
Galbraith, Sarah
Woodward, Jeremy
Holland, Anthony
Barclay, Stephen
Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title_full Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title_fullStr Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title_full_unstemmed Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title_short Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
title_sort eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462006/
https://www.ncbi.nlm.nih.gov/pubmed/26062801
http://dx.doi.org/10.1186/s12910-015-0034-8
work_keys_str_mv AT clarkegemma eatinganddrinkinginterventionsforpeopleatriskoflackingdecisionmakingcapacitywhodecidesandhow
AT galbraithsarah eatinganddrinkinginterventionsforpeopleatriskoflackingdecisionmakingcapacitywhodecidesandhow
AT woodwardjeremy eatinganddrinkinginterventionsforpeopleatriskoflackingdecisionmakingcapacitywhodecidesandhow
AT hollandanthony eatinganddrinkinginterventionsforpeopleatriskoflackingdecisionmakingcapacitywhodecidesandhow
AT barclaystephen eatinganddrinkinginterventionsforpeopleatriskoflackingdecisionmakingcapacitywhodecidesandhow