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Withholding or withdrawing life support in long-term neurointensive care patients: a single-centre, prospective, observational pilot study
  1. Maria-Ioanna Stefanou1,
  2. Mihaly Sulyok2,
  3. Martin Koehnlein3,
  4. Franziska Scheibe3,
  5. Robert Fleischmann4,
  6. Sarah Hoffmann3,
  7. Benjamin Hotter3,
  8. Ulf Ziemann1,
  9. Andreas Meisel3,
  10. Annerose Maria Mengel1
  1. 1 Department of Neurology and Stroke and Hertie Institute of Clinical Brain Reseach, University Hospital Tübingen, Tübingen, Germany
  2. 2 Department of Pathology, University Hospital Tübingen, Tübingen, Germany
  3. 3 Department of Neurology, Charite Universitatsmedizin Berlin, Berlin, Germany
  4. 4 Department of Neurology, Universitätsklinik Greifswald, Greifswald, Germany
  1. Correspondence to Dr Annerose Maria Mengel, Neurology, Universitätsklinikum Tübingen, Tubingen 72076, Germany; annerose.mengel{at}


Purpose Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.

Materials and methods A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.

Results 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.

Conclusions Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.

  • end-of-life
  • end of life care
  • ethics
  • living wills/advance directives
  • palliative care

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  • AM and AMM contributed equally.

  • Contributors M-IS analysed and interpreted the data and drafted the first manuscript. MS analysed the data and critically revised the manuscript. MK, FS, RF, SH and BH acquired the data and helped with the study conception and design. They also critically revised the manuscript. UZ interpreted the data and critically revised the manuscript. AM and AMM created the study concept and design together, and analysed and interpreted the data. AMM drafted the first manuscript together with M-IS.

  • Funding This work was supported by the University of Tübingen (AMM, TÜFF 2459-0-0).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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