1. FAMILY APPROACH 2nd part: REQUEST FOR ORGAN DONATION Danica Avsec, MD Key expert for Education and Communication Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

2. FAMILY INTERVIEW  How to break bad news  Request for the donation Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

3. Request for the donation Consent for the donation To evaluate biological risk factors Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

4. Opposition to Donation, ETPOD  Important number of lost Donors in many countries  Correctable cause  Less than 10% opposition can be achieved Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

5. OPT IN countries, 2011 Study on EU Action Plan on Organ Donation and Transplantation (2009-2015) by Nivel, published in June 2013 Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

6. Correctable elements Legislation (ETPOD) Psycholgical aspect AGREE model Other socio cultural aspects Religious statement Public awareness Educational level Additional strategies Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

7. OPT IN countries, 2011 Study on EU Action Plan on Organ Donation and Transplantation (2009-2015) by Nivel, published in June 2013 Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

8. OPT OUT countries, 2011 Study on EU Action Plan on Organ Donation and Transplantation (2009-2015) by Nivel, published in June 2013 Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

9. Correctable elements Legislation Psychological frame AGREE model -100% agreement Other socio cultural aspects Public awareness Educational level Religious statements Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

10. Psychological frame Absolutely crucial Way of communication Emotional release Empathy Facilitating the proces of grieving Is essential for developing the trust Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

11. Trust Developing the trust starts at the time of admission the patients and when first time contacting the family Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

12. Effectiveness of communication Jones et al (2008). “communication can only be effectively achieved where both parties have the same, or at least similar, recollection of what was communicated”. Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

13. Correctable elements Legislation Psychological aspect AGREE model Other socio cultural aspects Religious statement Public awarenes Educational level Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

14. AGREE study Family interview guide for requesting organ donation for transplantation and evaluation using the Appraisal of Guidelines Research and Evaluation (AGREE II) instrument Organs Tissues & Cells. 2012, November, 15, 3: 163 100% (40 interviews and 4 interviewers) consent from Jan 2011 to Aug 2012 Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

15. Family interview guidelines Cabalero et all, ORGANS, TISSUES & CELLS, (15), 163-169, 2012 Prepare recommendationsMake a plan for the interview A signature of relatives if needed Donor documentation About funeral timing etc Formalize the agreement Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

16. Planning for the family interview Attitude of the requester TCs In combination with ICU doctors Well trained and skilled in communicators Professionals Timing, placeThe content Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

17. Planning for the family interview Professionals The most optimal time for the family Duration of the interview, not too long Quiet, comfortable room Timing, place The content Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

18. Planning for the family interview ProfessionalsTiming, place All organs The process of donation Explain final steps Dignity of the donor body Psychological support to the family The content Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

19. Monitoring and assesment of the procedure is important Annual revision Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

20. Correctable elements Legislation Psychological aspect AGREE model Other socio cultural aspects Public awarenes Educational level Religious statement Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

21. Public awareness  Starts with open discussion within family  The most important predictor of consent is whether a discussion about donation had been performed before donation  Families who know the donor's wishes, are more likely to donate organs Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

22. Solidarity as an argument for Donation, ETPOD Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014 Social aspect: benefit in the society Group : somebody on the waiting list etc Individual: somebody from the broad family

23. More arguments for Donation, ETPOD Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014 Utility Death always seems like a waste but it could be useful to someone Death signifies rupture, it could be a form of continuity of life for other people Reciprocity, Generosity Positive arguments which elevate the image of the deceased We would do the same if he/she would need it? Tomorrow it could be for us Facilitation Invite them to visit the death person in the ICU to say good by Provide privacy and intimacy

24. Strategies to decrease family refusal rate, ETPOD  Deceased did not wish to donate  Try to find if it is true  Fear of the integrity and image of the corpse  Explain the process and assure respect and care of the corpse  Religious objections  Most main religious promote donation  Offer the opportunity to consult a RL  Dissatisfaction with the health care procedures  Accept complains  Separate it from the donation Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

25. WHEN 1. After medical and legal diagnosis of brain death 2. The physician in charge of the patient must report the death to the family. 3. Terminology use term ‘death’ and not the term ‘brain death’ 3. Family needs to understand the patient’s death. 4. Before the interview it is important to confirm that immediate relatives of the donor will attend. 5. It is advisable that the transplant coordinator is present Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

26. General recommendation 1 ONT Spain 1. Immediate relatives of the potential organ donor should be present at the interview. 2. The request for consent to donation must never be rushed. We should wait for the right time to approach the family. 3. After the physician in charge communicates the patient’s death, it is advisable to wait for families’ prompts such as: “What should we do now?” Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

27. General recommendations 2 4. At this moment, and not before, consent to organ donation for transplantation should be introduced to relatives by a professional from TCT. It should be explained that their deceased relative – naming him/her by their name – “can help others”. 5. An emphasis on the social and health benefits for patients on the waiting list for organ transplantation is recommended. 6. Death is hard, not donation. Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

28. To conclude Be aware : Giving bad news about dead is more difficult than asking for donation Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014

29. Teşekkür ederim Technical Assistance for Alignment in Organ Donation project, 1st International Symposium 2014