1. 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 The Swedish Intensive care Registry - SIR SSAI Congress, Bergen 15-17 June, 2011 Poster presentation

2. 16 June 2011 Swedish Intensive care Registry, SIR 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?

3. 16 June 2011 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) http://www.dopki.eu 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. Different wording – the same definition

4. 16 June 2011 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

5. 16 June 2011 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

6. 16 June 2011 Swedish Intensive care Registry, SIR 6 Dataset – What?

7. 16 June 2011 Swedish Intensive care Registry, SIR 7 21 County councils in Sweden

8. 16 June 2011 Swedish Intensive care Registry, SIR 8 6 620 deaths in 83 ICU’s during 2009-2010 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 County council variations Potential deceased organ donorsActual organ donors Alert limit -2SD Alarm limit -3SD New, severe brain damage

9. 16 June 2011 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!

10. 16 June 2011 Swedish Intensive care Registry, SIR 10 Actual organ donors per million people per year 2009 - 2010

11. 16 June 2011 Swedish Intensive care Registry, SIR 11 Actual organ donors per million people per year 2009 - 2010

12. 16 June 2011 Swedish Intensive care Registry, SIR 12 New severe brain damage? No: 4 634Yes: 1 986 Mechanical ventilation? Yes: 1 795Yes: 3 326No: 191No: 1 308 Brain death 451 Circulatory death 1 308 Group 1 20% Circulatory Death 3 326 Group 2 50% Circulatory death 191 Group 3 3% Circulatory death 1 344 Group 4 20% Group 5 7% Number of deceased patients: 6 620 83 ICU’s in Sweden 2009-2010

13. 16 June 2011 Swedish Intensive care Registry, SIR 13 Why couldn’t death be diagnosed by direct criteria (brain death? 1.Withdrawal of medical treatment 2.Withholding medical treatment 3.Medically unsuitable as organ donor 4.Cardiac activity could not be restored 5.No attention was paid to the patient as a possible donor 6.The deceased was negative to organ donation 7.No access to diagnostic radiology 8.No access to competent clinical neurological examination 9.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

14. 16 June 2011 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

15. 16 June 2011 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.orghttp://avlidna.icuregswe.org As yet only in Swedish!

16. 16 June 2011 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