Thomas Nolin *, Sten Walther*, Caroline Mårdh*, Göran Karlström* & Charlotte Möller**

1. The Swedish Intensive care Registry - SIR SSAI Congress, Bergen 15-17 June, 2011Poster presentation Regional variation of organ donors in Swedish ICUs may indicate missed opportunities for donation Thomas Nolin*, Sten Walther*, Caroline Mårdh*, Göran Karlström* & Charlotte Möller** * The Swedish Intensive care Registry, SIR **The Swedish Council for Organ and Tissue Donation http://www.icuregswe.org

2. Background • The Swedish Council for Organ and Tissue Donation (Donationsrådet): • Objective: 22 donors per million people (DPMP) by 2014 • Focus on withholding/withdrawing medical treatment in ICU • The National Board of Health and Welfare (Socialstyrelsen): • Proposal for new regulations on life-sustaining treatment • Potential conflict of interest in end-of-life decisions and organ procurement? Swedish Intensive care Registry, SIR

3. Starting point - Definition Potential deceased organ donor Intensive care patient with Mechanical ventilation and Brain death diagnosis (completed) and Identified as medically suitable for organ donation (no absolute contraindications to organ donation) Different wording – the same definition Eligible donation after brain death: A medically suitable person who has been declared dead based on neurologic criteria as stipulated by the law of the relevant jurisdiction. Domínguez-Gil B et al. Review. The critical pathway for deceased donation: reportable uniformity in the approach to deceased donation. Transplant International 2011. http://www.dopki.eu Swedish Intensive care Registry, SIR

4. Objectives To examine the incidence of patients with New severe brain damage, who received mechanical ventilation and were diagnosed with brain death, and the number of actual organ donors in the 21 Swedish county councils Swedish Intensive care Registry, SIR

5. Dataset – Who? All deceased intensive care patients in All Swedish ICU’s A structured protocol for follow up of deceased intensive care patients SIR and Swedish Council for Organ & Tissue Donation Swedish Intensive care Registry, SIR

6. Dataset – What? Swedish Intensive care Registry, SIR

7. 21 County councils in Sweden Swedish Intensive care Registry, SIR

8. 6 620 deaths in 83 ICU’s during 2009-2010 County council variations New, severe brain damage Potential deceased organ donors Actual organ donors Alert limit -2SD Alarm limit -3SD New, severe brain damage New, severe brain damage- and mechanical ventilation- and brain death- and medically suitable New, severe brain damage- and mechanical ventilation- and brain death- and medically suitable- and positive or presumed consent- and actual organ donation Swedish Intensive care Registry, SIR

9. Conclusions The number of actual organ donors varied from 0.5 % to 10.1 % of all ICU deaths There was no obvious relationship between the proportion of patients with new severe brain damage (17.9 – 43.4 %) and the proportion of actual organ donors May indicate that organ donors were missed in regions with a low rate of actual organ donors Thank you! Swedish Intensive care Registry, SIR

10. Actual organ donors per million people per year 2009 - 2010 Swedish Intensive care Registry, SIR

11. Actual organ donors per million people per year 2009 - 2010 Swedish Intensive care Registry, SIR

12. 83 ICU’s in Sweden 2009-2010 Number of deceased patients: 6 620 New severe brain damage? Yes: 1 986 No: 4 634 Mechanical ventilation? Mechanical ventilation? Yes: 1 795 No: 191 Yes: 3 326 No: 1 308 Braindeath 451 Circulatory death 1 344 Circulatory death 191 Circulatory Death 3 326 Circulatory death 1 308 Group 5 7% Group 4 20% Group 3 3% Group 2 50% Group 1 20% Swedish Intensive care Registry, SIR

13. Why couldn’t death be diagnosed by direct criteria (brain death? Withdrawal of medical treatment Withholding medical treatment Medically unsuitable as organ donor Cardiac activity could not be restored No attention was paid to the patient as a possible donor The deceased was negative to organ donation No access to diagnostic radiology No access to competent clinical neurological examination No clinical suspicion of total cerebral infarction New, severe brain damage and mechanical ventilation and circulatory death. N 1 344. 713 236 355 235 9 31 2 0 596 Multiple choices Swedish Intensive care Registry, SIR

14. Who defines medically suitable? Transplant surgeon and coordinator! But… There was no contact with transplant coordinator in potential deceased organ donor cases (N 375) in: 2009: 28/209 (13.4 %) 2010: 13/166 (7.8 %) All cases should be contacted! A quality indicator in SIR Swedish Intensive care Registry, SIR

15. Dataset The data are sent electronically to SIR validated and displayed on the SIR open website within 6 hours from completed validation http://avlidna.icuregswe.org As yet only in Swedish! Swedish Intensive care Registry, SIR

16. Actual (=effective) donor Individual from whom at least one organ was recovered for the purpose of transplantation Utilized donor A deceased person from whom at least one organ has been retrieved and transplanted http://www.dopki.eu Swedish Intensive care Registry, SIR