The Uniform Anatomical Gift Act, The Donate Life Colorado. Organ Allocation

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The Uniform Anatomical Gift Act, The Donate Life Colorado Organ Allocation Jennifer Prinz Chief Operating Officer May 29, 2014

Objectives To share data regarding the need for donation and transplantation To provide information regarding the Donate Life Colorado Organ & Tissue Donor Registry To explain what the heart on the license represents for Colorado To provide information regarding the UAGA To share information regarding the organ allocation process

Current Waiting List* 122,582 on National Waiting List 2,532 waiting in CO/WY 2013Conversion Rate** National average = 76% Donor Alliance = 88% 2013 Donor Registry Rates*** National Rates = 47.5% Colorado rate = 67% Wyoming rate = 59% *United Network For Organ Sharing: www.unos.org **Organ Donation Alliance: www.organdonationalliance.org *** Donor Alliance & Donate Life America: www.donatelife.net

The Good News: The Bad News: 8,267 Deceased Organ Donors in 2013 6,112 People Died While Waiting for a Transplant 25,431 Organs from Deceased Donors were Transplanted On Average, 17 people Died Every Day While on the Waiting List 122,301* People are on the Transplant Waiting list awaiting life-saving organs The Challenge:

The Current Waiting List:

The Current Waiting List: 20,000+ Additional Seats Needed

THE DONATE LIFE COLORADO ORGAN & TISSUE DONOR REGISTRY

The Donate Life Colorado Organ & Tissue Donor Registry Founded October 15, 2001: A mature registry that works Authorization for organs, eye, tissue, research and education First person authorization One of the Nation s highest-performing state donor registry with 67% of licensed drivers registered as donors

Your name is on the Donor Registry Donor Alliance determines a potential donors eligibility to be an organ and tissue donor, by having Statline look up the individuals name in the Registry.

DLO employees are required by law to ask the two questions: 1. Would you like to register to be an organ, eye and tissue donor? 2. Would you like to contribute $1.00 or more to the Donation Awareness Fund? If renewing: Would you like to remain an organ, eye and tissue donor?

About the plate We hit our goal of over 3,000 Donate Life plates in circulation! It is now a permanent option at the Colorado Department of Motor Vehicles. What does it cost? One-time $50 fee (does not coincide with registration renewal). How do you get one?

Keys to Registry s Success Partnership with DMV DLO clerks play an active role Receive training and education Partnership with Donor Hospitals Community education Upholding the registry as an advanced directive Promoting the registry in public education and public relations efforts

WHAT IS THE UNIFORM ANATOMICAL GIFT ACT?

Legal Basis of Deceased Donation The Uniform Anatomical Gift Act (UAGA) Primary legal authority for organ, eye and tissue donation Model legislation enacted as state law First drafted in 1968, revised in 1987 and 2006 Every state passed original UAGA 46 states have now enacted the 2006 version

Legal Basis of Deceased Donation Gift law as primary legal principle in UAGA Gift law requires 3 elements: Intent Transfer Acceptance A gift is a voluntary and legally binding uncompensated transfer The gift is for transplant, education and research

Legal Basis of Deceased Donation Under the UAGA an anatomical gift can be made: By an adult prior to death By an agent or parent prior to death By a surrogate decision-maker after death

Historical Perspective The original UAGA of 1968 An individual may make an anatomical gift to be effective after death by use of a document of gift Next-of-kin authorization not required if donor executed a valid document of gift Law versus practice In past, document not found so family authorization sought

Historical Perspective Development of Donor Registries An electronic donor card Donor registries changed first person authorization practices The law recognizes donor registration as a document of gift Reminder: donor registries follow gift law not informed consent principles

UAGA: First Person Authorization Valid document of gift Donor registry Signed document o Advanced directive o Health care proxy o Will Disclosure of donor designation to family CMS regulations OPO practice

First Person Authorization Adult individuals have the right to make a legally binding anatomical gift prior to death.

Ethical Basis of First Person Authorization Self-determination concept that adult individuals should be able to make their own decisions about donation of organs after their death Consistent with ethical principles behind other advanced directives

What Happens When the Family Objects? Law First person authorization is a legally binding anatomical gift that family cannot over-ride Gift can be accepted or declined Legally protected and granted immunity from liability if follow UAGA in good faith. Ethics Respect the autonomy rights of the donor Maximize the potential good (lives saved)

How To Move Forward Hospital staff knowledge of the law Escalation protocol in place Ascertain basis of family objection Assess transplant potential Coordinated decision between OPO and Hospital

5 Things Everyone In Healthcare Should Know About The Law & Ethics Of Donation The Uniform Anatomical Gift Act is the law that governs deceased donation It is based on gift law principles not informed consent Adults can make their own legally binding donation decision prior to death The UAGA applies regardless of how death is declared The ethical principle of autonomy supports first person authorization

WHAT HAPPENS WHEN THE FAMILY IS IN OPPOSITION TO THE REGISTRY?

Donor Family Conversations Important to have the right person available to have the donation conversation at the right time with the potential donor family

What Happens at the Time of Registered Death Family Conversation & Family Opposed Family Conversation & Family Supportive Continue to work with the Donor Family Consult with the Donor Alliance AOC Consult with the Donor Hospital Leadership & Care Team Continue through donation process

Organ Allocation

United Network for Organ Sharing (UNOS) National system of registered recipients Contracted by Government in 1987 Create checks and balances in system Goal: Fair and equitable system of allocation Stakeholders: Transplant Centers, Transplant Surgeons, OPO s, Waiting Recipients, Donor Families

Acknowledgements Data per United Network for Organ Sharing & Donor Alliance Portion of the Uniform Anatomical Gift Act information provided by Alexandra K. Glazier, JD, MPH, VP & General Counsel New England Organ Bank & Chair, OPTN/UNOS Ethics Committee Staff of Donor Alliance Staff of Donor Hospitals throughout Colorado and Wyoming