title: Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?
abstract: 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.
authors.affiliation: 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, CB2 0SR, Cambridge, UK. gcc29@medschl.cam.ac.uk.
authors.forename: Gemma
authors.initials: G
authors.lastname: Clarke
authors.affiliation: Department of Palliative Care, Box 63, Addenbrooke's Hospital, Hills Road, CB2 0QQ, Cambridge, UK. sarah.galbraith@addenbrookes.nhs.uk.
authors.forename: Sarah
authors.initials: S
authors.lastname: Galbraith
authors.affiliation: Department of Gastroenterology, Box 133, Addenbrooke's Hospital, Hills Road, CB2 0QQ, Cambridge, UK. jeremy.woodward@addenbrookes.nhs.uk.
authors.forename: Jeremy
authors.initials: J
authors.lastname: Woodward
authors.affiliation: Cambridge Intellectual & Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, Douglas House, 18B Trumpington Road, CB2 8AH, Cambridge, UK. ajh1008@medschl.cam.ac.uk.
authors.forename: Anthony
authors.initials: A
authors.lastname: Holland
authors.affiliation: 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, CB2 0SR, Cambridge, UK. sigb2@medschl.cam.ac.uk.
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
mesh_terms: D003657:Decision Making / Q000941:ethics*; D004326:Drinking; D004435:Eating; D004992:Ethics, Medical; D006126:Group Processes; D006761:Hospitals; D006801:Humans; D007258:Informed Consent; D007400:Interprofessional Relations; D016743:Mental Competency; D009014:Morals; D018529:Nutritional Support / Q000941:ethics*; D015397:Program Evaluation; D011787:Quality of Health Care; D012306:Risk; D013727:Terminal Care; D006113:United Kingdom