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

BMC Medical Ethics

Stephen Barclay²  Anthony Holland³  Jeremy Woodward⁴  Sarah Galbraith¹  Gemma Clarke² 

[1] Department of Palliative Care, Box 63, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ, UK;Palliative and End of Life Care Group, Department of Public Health and Primary Care, Institute of Public Health Forvie Site, University of Cambridge School of Clinical Medicine, Box 113 Cambridge Biomedical Campus, Cambridge, CB2 0SR, UK;Cambridge Intellectual & Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, Douglas House, 18B Trumpington Road, Cambridge, CB2 8AH, UK;Department of Gastroenterology, Box 133, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ, UK

关键词: Progressive neurological disease;    Eating and drinking interventions;    Artificial nutrition;    Multi-professional;    Healthcare decisions;    Decision-making capacity;   

Others  :  1212271
DOI  :  10.1186/s12910-015-0034-8

 received in 2015-01-21, accepted in 2015-05-29,  发布年份 2015

【 摘 要 】

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.

【 授权许可】

   
2015 Clarke et al.

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