20180905 Current state of presumed consent in Sweden Carin Franzn - PDF document

2018‐09‐05 Current state of presumed consent in Sweden Carin Franzén Wenche Stribolt National Donation Centre National Board of Health and Welfare National Gove r ning Boa r d Advisor y Counc il National guidelines coordination Committe e for Dir e c tor Knowle dg e -ba se d Ge ne r a l Guida nc e Communic ations De pa r tme nt of 2016-09-19 Dir e c tor Ge ne r a l’s Sta ff Information De pa r tme nt Suppor t Se r vic e s to the F ina nc e Unit Me dia Re la tions Unit E me r g e nc y National Huma n Re sour c e s Unit Pr e par e dne ss Unit Communic a tion ICT Unit general Pla nning Unit Re g istr y Unit strategy for Legal Inte r ne t a nd F a c ilitie s Unit Public a tions Unit Pr oc ur e me nt Unit public framework donation De pa r tme nt for De pa r tme nt of De pa r tme nt for De par tme nt for De pa r tme nt of Knowle dg e -Base d L e g a l De pa r tme nt Author isa tions a nd Knowle dge -Based Sta tistic s a nd Eva lua tion a nd Polic y of Soc ia l Compa r isons Gove r nme nt g r a nts Polic y of He alth Car e Ana lysis Se r vic e s National and Soc ial Se r vic e s Author isations Unit 1 – 2 He a lth Ca r e a nd Soc ia l L e gal Unit, Na tiona l We lfa r e Guidanc e Unit 1 – 2 We lfar e Re giste r Unit international Public L a w Gove r nme nt De ve lopme nt Unit Dona tion Ce ntre Knowle dge Re giste r Se r vic e s Unit L e gal Unit, Gr a nts Unit E pide miology Applic a tion Unit Soc ial Se r vic e s Unit for Hig hly co-operation Statistic s Unit 1 – 2 and Me thodologic al Spe c ialize d Ca r e Re se a r c h a nd National L e gal Unit, Suppor t Unit E ffic ie nc y and De ve lopme nt Unit He a lth Ca r e Na tiona l Guide line s E valua tion Unit Qua lity Studie s Unit 1 – 2 Unit 1 – 2 e He alth and Str uc tur e d Syste ms Ana lysis Unit monitoring Pe r for ma nc e He a lth Ca r e Infor ma tion Unit Asse ssme nt Unit Guidanc e Unit Unac c ompanie d Cla ssific a tions a nd Minor s Knowle dg e Pa tie nt Sa fe ty Unit T e r minology Unit Ce ntre 1

2018‐09‐05 Organ donation in Sweden Donation regions and transplantation centres in Sweden Utilized donors per million inhabitants Transplanted organs from living and deceased donors in 2017 128 organs from living donors 690 organs from deceased donors Total 818 organs 2

2018‐09‐05 The need for organs Presumed consent in Sweden Explicit or presumed consent Presumed consent in Sweden WHO’s definitions 2009 Opt-in: explicit consent • Law on transplantation 1996 Legally valid permission for removal of human cells, tissues and organs for transplantation. Otherwise known as “opting in”. Opt-out: presumed consent Legally valid presumption of permission for removal of cells, tissues and organs for transplantation, in the absence of individual pre-stated refusal of permission. Otherwise known as “opting out”. • Soft presumed consent: opt-out & opt-in 3

2018‐09‐05 The deceased The deceased's The deceased Three ways to declare your is positive to decision to donate is is negative to donation unknown donation decision Family interprets • Inform next-of-kin the deceased’s decision Family Family • Donor register members can't be can't agree reached Family • Donor card member's veto YES to donation NO to donation To sum it up: Next steps whose decision? • Optimise an organisation model within the healthcare sector that promotes the donation process • Ensure and obtain a positive attitude to organ donation among different target groups • Simplify for individuals to declare their decision on donation 4

2018‐09‐05 Thank you! carin.franzen@socialstyrelsen.se wenche.stribolt@socialstyrelsen.se 5