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

2018 09 05
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20180905 Current state of presumed consent in Sweden Carin Franzn - - PDF document

20180905 Current state of presumed consent in Sweden Carin Franzn 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


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2018‐09‐05 1

Current state of presumed consent in Sweden

Carin Franzén Wenche Stribolt

National Board of Health and Welfare

De pa r tme nt of Sta tistic s a nd Compa r isons De pa r tme nt for Author isa tions a nd Gove r nme nt g r a nts De par tme nt for Knowle dge -Based Polic y of He alth Car e De pa r tme nt for Knowle dg e -Base d Polic y of Soc ia l Se r vic e s De pa r tme nt of Eva lua tion a nd Ana lysis Committe e for Knowle dg e -ba se d Guida nc e Gove r ning Boa r d Advisor y Counc il

He a lth Ca r e a nd Soc ia l We lfar e Re giste r Unit Re giste r Se r vic e s Unit Statistic s Unit 1 – 2 E ffic ie nc y and Qua lity Studie s Unit 1 – 2 Pe r for ma nc e Asse ssme nt Unit Cla ssific a tions a nd T e r minology Unit Author isations Unit 1 – 2 Gove r nme nt Gr a nts Unit Soc ial Se r vic e s Guidanc e Unit 1 – 2 Knowle dge Applic a tion Unit Re se a r c h a nd De ve lopme nt Unit e He alth and Str uc tur e d Infor ma tion Unit Unac c ompanie d Minor s Knowle dg e Ce ntre We lfa r e De ve lopme nt Unit E pide miology and Me thodologic al Suppor t Unit E valua tion Unit Syste ms Ana lysis Unit

Na tiona l Dona tion Ce ntre

Unit for Hig hly Spe c ialize d Ca r e Na tiona l Guide line s Unit 1 – 2 He a lth Ca r e Guidanc e Unit Pa tie nt Sa fe ty Unit

Dir e c tor Ge ne r a l 2016-09-19 De pa r tme nt of Suppor t Se r vic e s Communic ations De pa r tme nt

E me r g e nc y Pr e par e dne ss Unit F ina nc e Unit Huma n Re sour c e s Unit ICT Unit Re g istr y Unit F a c ilitie s Unit Pr

  • c ur

e me nt Unit

Dir e c tor Ge ne r a l’s Sta ff

Me dia Re la tions Unit Communic a tion Pla nning Unit Inte r ne t a nd Public a tions Unit

L e g a l De pa r tme nt

L e gal Unit, Public L a w L e gal Unit, Soc ial Se r vic e s L e gal Unit, He a lth Ca r e

National strategy for donation

National monitoring National guidelines National coordination National and international co-operation Information to the general public

National Donation Centre

Legal framework

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2018‐09‐05 2

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

Total 818 organs

690 organs from deceased donors 128 organs from living donors

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SLIDE 3

2018‐09‐05 3

The need for organs

Presumed consent in Sweden

Explicit or presumed consent

WHO’s definitions 2009

Opt-in: explicit consent

Legally valid permission for removal of human cells, tissues and

  • rgans 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”.

Presumed consent in Sweden

  • Law on transplantation 1996
  • Soft presumed consent: opt-out & opt-in
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2018‐09‐05 4

Three ways to declare your decision

  • Inform next-of-kin
  • Donor register
  • Donor card

The deceased is positive to donation The deceased's decision to donate is unknown The deceased is negative to donation YES to donation NO to donation Family interprets the deceased’s decision Family can't be reached Family members can't agree Family member's veto

To sum it up:

whose decision? Next steps

  • Optimise an organisation model within the

healthcare sector that promotes the donation process

  • Ensure and obtain a positive attitude to
  • rgan donation among different target

groups

  • Simplify for individuals to declare their

decision on donation

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SLIDE 5

2018‐09‐05 5

Thank you!

carin.franzen@socialstyrelsen.se wenche.stribolt@socialstyrelsen.se