volunteer handbook

Advocates for HopeSaving Lives Through Community Outreach

handbookvolunteer

Welcome to the Advocates for Hope Volunteer Program!

Advocates for Hope play a vital role in helping Gift of Hope and the Illinois Eye-Bank educate the public about the critical need for organ, eye and tissue donors and inspire people to join the Illinois and Indiana Donor Registries. We are glad to have you as a part of our team. Together, we help to save lives across Illinois and northwest Indiana.

Our Advocates include transplant recipients, transplant candidates, donor family members, living donors and all others who help to educate our communities about organ and tissue donation. Through your hard work, compassion and dedication, our efforts are successful. Thank you for joining us as we continue to save and enhance lives through organ, eye and tissue donation.

Our ultimate goal is to ensure that you have a meaningful volunteer experience. This handbook was developed to provide you with information about organ, eye and tissue donation, the types of volunteer opportunities available, and your role as an Advocate. We encourage you to share your ideas and experiences.

We hope that your Advocate experience will be rewarding, and we look forward to working together.

Best Regards,

Heidi SchaibergerPublic Relations Volunteer CoordinatorGift of Hope Organ & Tissue Donor Network425 Spring Lake DriveItasca, IL 60143630/[email protected]


A Donate Life Organization

letter-toc.indd 1 1/15/2013 11:25:20 AM

ORGANIZATIONAL OVERVIEW

Gift of HopeIllinois Eye-BankDonate Life IllinoisNational Donation Organizations

PROGRAM OVERVIEW

Orientation and TrainingAdvocate Goals, Expectations and PoliciesOutreach OpportunitiesProgram Outreach ProceduresAnnual Events

DONATION 101

Organ DonationUnderstanding Donation After Brain DeathUnderstanding Donation After Circulatory DeathTissue DonationDonor RegistriesFrequently Asked Questions Religious Views Glossary of Terms

TALKING POINTS

Overview & TerminologyFirst ImpressionsKey Message PointsWhat Should Advocates Say?Talking to Children About Organ, Eye and Tissue Donation

ADDITIONAL RESOURCES

Speaking Opportunity Preparation WorksheetMaterials and Advocate Request FormOutcome ReportExpense Reimbursement FormFact SheetQuestions Form

Table of Contents

1236

1369

10

1 34 567

1317

12234

letter-toc.indd 2 1/15/2013 11:25:52 AM

Organizational Overview


OR

GA

NIZ

AT

ION

AL

OV

ERVIEW


Gift of Hope Organ & Tissue Donor NetworkGift of Hope Organ & Tissue Donor Network is the federally designated, not-for-profit organ procurement organization (OPO) that coordinates organ and tissue donation and provides public education in Illinois and northwest Indiana. One of 58 OPOs that make up the nation’s donation system, Gift of Hope has saved the lives of nearly 20,000 organ transplant recipients and improved the lives of more than 160,000 tissue transplant recipients since we began our lifesaving mission in 1987.

Gift of Hope Service Area at a Glance

• Work with 180 hospitals and 32 transplant programs in nine transplant centers• Serve 12 million people in our service area• Work with about 300 organ donors and their families and more than 1,000 tissue donors and

their families each year• Provide about 900 organs for transplant each year• Provide thousands of tissue transplants each year

Services Provided by Gift of Hope Staff

• Provide the people of Illinois and northwest Indiana with the information needed to make an informed decision about donation

• Offer ongoing support to donor families• Educate healthcare professionals about the donation process• Coordinate the organ and tissue donation process• Assist hospitals with development of policies and procedures for donation• Work to advance recovery technologies and techniques• Evaluate processes and donation trends to meet the needs of those waiting and ensure the

safety of donated organs and tissue• Register people as organ, tissue and eye donors

MissionTo save and enhance the lives of as many people as possible through organ and tissue donation.

VisionA day when every person chooses to donate life, making organs and tissue available for all people in need.

1

organizational_overview.indd 1 1/15/2013 11:23:50 AM


Illinois Eye-BankThe Illinois Eye-Bank and the Illinois Eye-Bank, Watson Gailey, are divisions of Midwest Eye-Banks, an independent, not-for-profit organization dedicated to the preservation and restoration of sight. The Illinois Eye-Bank recovers, evaluates and distributes human eye tissue for transplantation. As part of its mission, the Illinois Eye-Bank supports preliminary research into the causes and cures of blinding eye conditions. Through public and professional education programs, the Illinois Eye-Bank encourages people to learn about eye, organ and tissue donation in order to make an informed decision regarding their personal wishes.

The Illinois Eye-Bank provides nearly 2,000 corneas each year for transplantation, research and education. The Eye-Bank also provides eye tissue to recipients without adequate medical insurance through the charitable tissue fund. Because of the many generous eye tissue donors and donor families, the Illinois Eye-Bank can facilitate the gift of sight.

MissionTo preserve and restore sight, through transplantation, research, education and partnership.

Priorities for Action

• Increase U.S. and international distribution of surgical cornea tissue• Strengthen eye banking’s ability to restore sight• Strengthen governance and leadership• Systematically improve performance• Build and sustain a high-performance, motivated team

2



Donate Life IllinoisDonate Life Illinois is a coalition of agencies representing organ, tissue, eye and blood donation focused on educating the public and encouraging people to register as lifesaving donors. As a member of Donate Life America, Donate Life Illinois seeks to inspire residents to save and enhance lives through organ, tissue, eye and blood donation. Donate Life Illinois consists of the following member organizations:

American Liver Foundation, Illinois ChapterIllinois-liver.org

The American Liver Foundation is the nation’s leading not-for-profit organization promoting liver health and disease prevention. An estimated 300,000 residents of Illinois and northwest Indiana are affected by liver disease. In addition to promoting liver health, the Illinois Chapter offers community support groups and educational forums for the public and medical professionals.

Biological Resource Center of IllinoisBrcil.org

The Biological Resource Center of Illinois (BRCI) is an Illinois-based willed body to science program focused on the advancement of medicine through the recovery and placement of non-transplantable donated human tissue. BRCI was founded to further the cause of research and medical education in order to study specific diseases, develop new surgical techniques, assist in the creation of progressive medical devices, assist with surgical training of physicians and develop medical students’ skills in complex anatomical studies.

Gift of Hope Organ & Tissue Donor NetworkGiftofHope.org

Gift of Hope Organ & Tissue Donor Network is the federally designated, not-for-profit organ procurement organization responsible for coordinating organ and tissue donation in the northern three-quarters of Illinois and northwest Indiana. Staff works with and educates medical professionals, the general public and other important audiences on all aspects of donation. Since 1987, Gift of Hope has coordinated donations that have saved the lives of nearly 20,000 organ transplant recipients and improved the lives of more than 160,000 tissue transplant recipients. Gift of Hope’s mission is to save and enhance the lives of as many people as possible through organ and tissue donation.

3



Heartland Lions Eye BankHleb.org

The Heartland Lions Eye Banks (HLEB) is a program of the Missouri Lions Eye Research Foundation, a not-for-profit corporation with the mission to preserve and restore sight. HLEB retrieves and processes the highest quality donor eye tissue and distributes it to corneal surgeons. In addition to providing quality tissue for transplant, HLEB actively promotes donation in its local eye banking communities.

Illinois Coalition of Community Blood Centersc/o Rock River Valley Blood CenterIllinoisbloodcenters.org or Rrvbc.org

The Illinois Coalition of Community Blood Centers (ICCBC) is a statewide organization of independent community blood centers dedicated to increasing awareness of the importance of voluntary blood donation through advocacy and public education. ICCBC members collect more than 600,000 units of blood and blood products annually, supply blood products and services to 175 hospitals in 71 Illinois counties and employ nearly 1,500 blood collection professionals statewide.

Representing the ICCBC on Donate Life Illinois, the Rock River Valley Blood Center is a not-for-profit organization that supplies the total blood needs for nine area hospitals. It relies on donors from six counties in the Rock River Valley: Winnebago, Boone, McHenry, Ogle and Stephenson counties in Illinois and Rock County in Wisconsin.

Illinois Eye-Banklllinoiseyebank.org

The Illinois Eye-Bank and the Illinois Eye-Bank, Watson Gailey, are divisions of Midwest Eye-Banks, an independent, not-for-profit organization dedicated to the preservation and restoration of sight. The Illinois Eye-Bank recovers, evaluates and distributes human eye tissue for transplantation. As part of its mission, the Illinois Eye-Bank supports preliminary research into the causes and cures of blinding eye conditions. It also provides humanitarian aid to those unable to afford transplantation procedures, both at home and abroad, by waiving service fees when a charitable need exists.

Illinois Secretary of State Jesse White, Illinois Organ/Tissue Donor ProgramLifeGoesOn.com

The Office of the Secretary of State of Illinois established the nation’s first donor registry in 1993, and the Illinois Organ/Tissue Donor Registry has become the nation’s largest under Secretary of State Jesse White. The office produces an annual National Donate Life Month advertising campaign that reaches millions of Illinoisans, drawing attention to the need for donation and the importance of joining the state registry. Illinois Organ/Tissue Donor Program staff work year-round throughout Illinois to provide op-portunities for the public to register their decisions to donate life.

4



LifeSourceLifesource.org

LifeSource is the largest blood center in Illinois and distributes a half-million blood products annually to about 60 area hospitals to meet the need for patient transfusion therapy. LifeSource operates 23 donor centers and two mobile unit-supported donor centers and conducts an average of 10 mobile blood drives daily. LifeSource recruits donors, collects bone marrow and draws blood to separate into useful components such as whole blood, platelets, plasma, stem cells and other special products for hospitals and healthcare customers.

Mid-America Transplant ServicesMts-stl.org

Mid-America Transplant Services is the federally designated organ procurement organization responsible for coordinating organ and tissue donation in southern Illinois.

Musculoskeletal Transplant FoundationMtf.org

The Musculoskeletal Transplant Foundation, the nation’s largest tissue bank, provides tissue through a commitment to excellence in education, research, recovery and care for recipients, donors and their families. Since its inception in 1987, MTF has recovered tissue from more than 90,000 generous donors and has distributed nearly 5 million grafts for transplantation.

National Kidney Foundation of IllinoisNkfi.org

The National Kidney Foundation of Illinois (NKFI) seeks to prevent kidney and urinary tract diseases and improve the health and well-being of people affected by these diseases. As an affiliate of the National Kidney Foundation, NKFI has provided services and programs for patients, families and communities within Illinois for more than 60 years.

National Marrow Donor ProgramMarrow.org

The National Marrow Donor Program® (NMDP) is a not-for-profit organization that facilitates bone marrow, blood stem cell and umbilical cord blood transplant processes. NMDP’s mission is to extend and improve lives through innovative stem cell therapies.

5


National Donation Organizations

Donate Life AmericaDonateLife.net

Donate Life America (DLA) was founded by the donation community in 1992 to educate the public about organ, eye and tissue donation through consistent messaging and a collective effort of its members. DLA publishes brochures, program kits and other materials; provides technical assistance and referral services; coordinates national public relations campaigns; shares best practices; and leads the Donor Designation Collaborative aimed at registering people to be organ, eye and tissue donors.

United Network for Organ Sharing UNOS.org

The United Network for Organ Sharing (UNOS) is the private, not-for-profit organization that manages the national organ transplant waiting list. It sets criteria for how people are added to the list and coordinates the system of matching organs with patients who are waiting for transplants. All organ procurement organizations and transplant centers are members of UNOS.


6


Program Overview

Advocates for HopeSaving Lives Through Community Outreach PR

OG

RA

MO

VERV

IEW

Program Overview

1

Orientation and Training New Advocates are required to attend mandatory orientation training sessions conducted by Gift of Hope and the Illinois Eye-Bank before they can be considered “active” in the Advocates for Hope volunteer program. Advocates also are provided with optional, specialized workshops and educational opportunities throughout the year.

Advocates for Hope OrientationThis one-day orientation includes three, consolidated training sessions. It’s an opportunity for new and existing Advocates to meet or reunite with fellow Advocates and learn about Gift of Hope, the Illinois Eye-Bank, organ and tissue donation and your role as an Advocate through interactive training sessions and discussion of goals. Family members, friends or others interested in becoming Advocates are encouraged to attend.

• AdvocatesforHope 101This session introduces Advocates to Gift of Hope, the Illinois Eye-Bank, the process of organ and tissue donation, the Advocates for Hope Volunteer Program and the next steps to getting involved.

• Managing a Donor Registration Drive Learn how to manage a Donor Registration Drive by reviewing how to communicate effectively with the community, acquire registrations and master set-up and tear-down procedures for your donor registration station. You will also learn about common myths, valuable statistics and answers to challenging questions.

• Tell Your Story Learn how to create a customized presentation based on your experience with donation or transplantation for public outreach, clinical audiences and media opportunities. You will review a recommended presentation format and learn how to integrate relevant statistics into your story to inspire community members to join the donor registry. This session wraps up with reviewing public speaking tips. You are asked to prepare and bring a five-minute, draft version of your story to share at the end of this training session. This session is mandatory only for people with a direct connection to donation or transplantation who intend to share their stories of donation.

Specialized Workshops The Advocates for Hope specialized workshops enhance your knowledge of donation and transplantation and maximize your ability to appropriately and accurately interact with the public at community and clinical outreach opportunities.

• Messaging WorkshopThis webinar-based workshop focuses on strategies to develop your listening and speaking skills and establish key donation-related take-home messages to share. Advocates who attend will walk away with new skills and a greater understanding of how to engage listeners about organ and tissue donation. Length: 2 hours

program_overview.indd 1 1/15/2013 10:35:59 AM

Program Overview

• Our Stories & How We Share Them: Understanding the Backstage/Front Stage TheoryThis webinar-based workshop addresses the most effective and appropriate ways to share personal stories in the community and clinical settings. We will talk about how you can frame your message to be effective while also protecting and cherishing private memories. Issues of over-disclosure, story “burnout” and addressing difficult questions from the public will be covered. Length: 2 hours

• Speechwriter’s WorkshopThe Speechwriter’s Workshop is for Advocates who want to develop their stories. You will share a five-minute version of your story, which you must prepare before the workshop. As a group, we will discuss the importance of setting the tone, knowing your audience, evaluating your opportunity and repeating important information using structure, phrases and key words. Workshop facilitators will spend one-on-one time with you to specifically address the structure and points of your story. You will receive constructive feedback, pointers and guidance to improve the effectiveness of your presentation. The workshop will address structure, clarity of message and “tricks of the trade” for bringing the best possible speech to varied audiences. Length: 4 hours

• Organ Donation Process Presentation This presentation provides an in-depth look at the organ donation process. Gift of Hope’s organ recovery staff will cover the different staff positions involved in the intricate process of managing an organ recovery case to provide organs to transplant recipients. A Donor Family Services staff member will share the different types of aftercare follow-up and support that Gift of Hope provides to donor families. Length: 2.5 hours

• Tissue Donation Process Presentation This presentation provides an in-depth look at the tissue donation process. Staff from Gift of Hope and the Illinois Eye-Bank will cover the process of managing a tissue recovery case and all the types of tissue that can be donated. Length: 2.5 hours

2


Program Overview

Advocate Goals, Expectations and PoliciesWhen Gift of Hope and the Illinois Eye-Bank participate in an event, the driving purpose is to encourage people to register as organ, eye and tissue donors. A secondary goal is to enhance the image of donation — specifically the image of Gift of Hope and the Illinois Eye-Bank — among our many public and professional audiences.

Outreach Program CriteriaWe ask our Advocates to identify programs that provide an opportunity to reach important audiences in their communities (and workplaces, etc.) with the donation message and to present them with the opportunity to register as organ, eye and tissue donors. We ask you to look around your community and your workplace and consider other community affiliations to identify opportunities for outreach.

• Advocates are expected to coordinate all outreach opportunities with Gift of Hope’s Public Relations Volunteer Coordinator.

• We also ask that Advocates be available, schedules permitting, to fulfill opportunities that come directly through Gift of Hope and the Illinois Eye-Bank.

Material Needs & Requests for Outreach Giveaway materials should be used to pique someone’s interest, draw people to your booth, engage them and provoke action to either register as donors or discuss donation with family and friends.

• Material requests must be associated with an approved program.• Materials should be handed out to people with a genuine interest in donation and donor

registration, not to everyone who walks by.• A good rule of thumb: To hand out a keychain, bracelet or anything else, some level of interaction

and engagement (i.e., a conversation about donation and some sense that the person is interested in registering, not simply interested in a free water bottle) must occur.

• Requests for materials will be evaluated based on how you plan to use them.

AdvocatesforHopeNewsandOpportunities E-newslettersAdvocates are expected to read the Advocates for Hope News and Opportunities e-newsletter sent out every other week. The e-newsletter includes updates, outreach opportunities, trainings, tips and tidbits, current events and information on special occasions such as birthdays and transplant anniversaries.

Attire for EventsTo present the donation message in a professional manner, we expect our Advocates to dress accordingly for outreach opportunities:

• Speaking Opportunities: Business casual or professional attire and an Advocates for Hope name badge.

• Donor Registration Drives: Gift of Hope or Illinois Eye-Bank polo, black or khaki pants and an Advocates for Hope name badge. For outdoor summer events, shorts and skirts of a respectable length are permissible.

3


Program Overview

4

Training RequirementsAll new Advocates are required to take the mandatory Advocates for Hope Orientation before they are considered active. Advocates can repeat this training at any time.

Existing Advocates may be asked to retake the training as a refresher or if major changes are made to the program.

Additional specialized trainings are available, and Advocates are encouraged, but not required, to attend. Some Advocates may be required to take the specialized Speechwriter’s Workshop if they want to share their donation/transplantation story on behalf of Gift of Hope.

Volunteer Status & Program Participation RequirementsAfter completing the mandatory Advocates for Hope Orientation, Advocates must participate in at least one opportunity every 18 months to maintain “active” status. Advocates who fail to meet this minimum requirement will be ”inactivated,” removed from Advocate communications and required to retake the mandatory orientation to regain “active” status. This ensures an accurate, active volunteer count, as well as efficiency and accountability throughout the volunteer program.

Standards of ConductTo help ensure that donation is viewed positively in the community, we ask that all Advocates uphold the following standards of conduct in all activities conducted on behalf of Gift of Hope and the Illinois Eye-Bank:

• Be proactive by reviewing the Advocates for Hope News & Opportunities e-newsletters published every other week.

• Represent yourself as an Advocate for Gift of Hope and the Illinois Eye-Bank, not as an administrator or employee. Representing any other outside organization while volunteering as an Advocate creates a conflict of interest and is unacceptable.

• Treat fellow Advocates, Gift of Hope and Illinois Eye-Bank staff members and members of the public with the highest respect and courtesy at all times.

• Communicate knowledgeably and professionally in all Advocates for Hope activities.• Dress and conduct yourself appropriately for all Advocates for Hope activities, consulting with

Gift of Hope’s Public Relations Volunteer Coordinator if necessary.• Work positively and constructively with others and bring issues or concerns to the attention of

the Gift of Hope Public Relations Volunteer Coordinator immediately.• Refrain from improper or threatening language. Discrimination of any kind will not be tolerated.• Refrain from using any substance, alcohol or drugs that may impair your ability to represent

yourself positively as an Advocate for Hope.• Attend required trainings and read pertinent materials before beginning a volunteer assignment.


Program Overview

5

• Present current and accurate information about organ and tissue donation and transplantation to the public based on the information provided to you.

• Notify Gift of Hope of potential events and awareness activities available to Gift of Hope and the Illinois Eye-Bank.

• Be responsible for all Gift of Hope equipment and materials used and return them promptly after your event.

• Maintain confidentiality of all donor registration materials.• Contact Gift of Hope immediately if you have any contact with the media. Do not speak with

the media as a representative of Gift of Hope or the Illinois Eye-Bank without prior approval.• Be prompt when committed to participate in a function. Notify Gift of Hope as soon as possible if

your availability for a particular event changes for any reason.• Share your time, talents and desire to save and enhance lives through the promotion of organ and

tissue donation.

In Case of Emergency In case of a personal or weather emergency that prevents you from participating in a scheduled program, please contact Heidi Schaiberger, Public Relations Volunteer Coordinator, as soon as possible at 630/758-2740. If you are unable to reach her directly, call the above number, press “0” for the operator, and ask that a page be sent to Heidi with a number where you can be contacted. Voicemail messages are sent to Heidi’s e-mail, so please leave a message.

ConfidentialityIn the course of volunteering with Gift of Hope and the Illinois Eye-Bank, you may learn of information designated as personal and confidential. This may include donor, recipient or family information for which release has not been authorized outside of Gift of Hope or the Illinois Eye-Bank. Please be considerate of this privileged information and do not share it. All volunteers will be required to sign a confidentiality agreement.

Volunteer DismissalWhile Advocates may end their involvement with Gift of Hope and the Illinois Eye-Bank at any time, it also may become necessary to dismiss an Advocate due to irreconcilable differences or actions that Gift of Hope and the Illinois Eye-Bank view as having an adverse impact on the organizations. These may include the following:

• Inability to understand and follow the rules of confidentiality• Disregard for the program expectations, policies, procedures and/or standards of conduct• Consistent failure to report to assignments• Reporting for an Advocate assignment while under the influence of drugs or alcohol• Assault, theft, patient/family abuse, dishonesty or harassment


Program Overview

6

Outreach Opportunities Advocates for Hope can serve in any of the following areas, each of which are crucial to our successful outreach efforts.

Administrative SupportAdministrative support Advocates assist with projects throughout the year, especially during campaign months including National Donate Life Month and National Donor Sabbath. Opportunities include:

• Entering data for projects (computer knowledge and skills required)

• Compiling materials/mailings• Assisting with material inventory• Assembling packets for programs

Donor Registration DrivesRegardless of where you live, you always have plenty of opportunities to hold Donor Registration Drives throughout your community. Advocates have held successful events at health fairs, community events, places of worship and local businesses. Donor Registration Drives seek to educate and encourage people to register their decisions to be organ, tissue and eye donors. Advocates are needed to work shifts at these events or, occasionally, to work entire events.

Donor Registration Drives are designed to communicate current information about organ, eye and tissue donation and transplantation, help the public make informed decisions about becoming a registered donor and encourage people to share their donation decisions with their loved ones. Advocates should be able to stand for long periods and lift supplies.

At every Donor Registration Drive, Advocates offer a giveaway to each visitor who presents a driver’s license with the Donor symbol or to people who register their donation decision on one of our registration cards. People who are not registered or choose to not sign up at the booth receive an informational brochure with a registration card to take with them. Advocates also should inform people who do not register that they can register online easily at GiftofHope.org.

Three Types of Donor Registration DrivesFast-Paced Events These events require Advocates to speak very briefly to individuals. Many people may be in a hurry or the event creates a fast-paced experience for attendees. Advocates working these types of events are encouraged to ask the questions: “Are you a registered organ and tissue donor? Do you have the Donor symbol on your driver’s license?” Often visitors have the time to answer only those questions; there is no time to share your story.

Slow-Paced Events Slower-paced events give Advocates more time to interact with visitors and tell their personal story. Advocates should still ask these simple questions: “Are you a registered organ and tissue donor? Do you have the Donor symbol on your driver’s license?” Advocates should encourage attendees to answer a question and engage them by sharing their personal story.

Virtual Donor Registration DrivesThe power of e-mail is truly seen through a virtual Donor Registration Drive. If you have only a few minutes, this is a great way to reach many people, and you don’t even have to leave the comfort of your home or office.

Virtual drives are done using e-mail and are simple, quick, yet very effective ways to educate and encourage people to register their decisions to be organ, eye and tissue donors. Just request an e-mail template using the Materials & Advocate Request Form. Once you receive the template, you can easily copy it into an e-mail and send it to everyone you know. This is an extremely effective technique that can generate hundreds of registrations!


Program Overview

7

Speakers Bureau Advocates who have been touched by donation or transplantation and have an interest in professional public speaking have plenty of opportunities to tell their stories. Publicly sharing your personal story and the importance of organ, eye and tissue donation with local community groups, hospitals and businesses helps to educate and encourage people to register as organ and tissue donors. Advocates interested in being a public speaker must complete the Tell Your Story training and, possibly, the Speechwriter’s Workshop.

Advocate-Initiated OutreachAs an Advocate, you can identify opportunities to host a Donor Registration Drive or publicly share your personal story through connections in your community (e.g., community events, clubs, workplaces, etc.).

Media InterviewsAll media interviews are coordinated through Gift of Hope’s Communications Department. Advocates agree not to speak to the media or otherwise act as a spokesperson on behalf of Gift of Hope, the Illinois Eye-Bank, Donate Life Illinois or its member agencies unless authorized by Gift of Hope or the associated member agency of Donate Life Illinois. All media inquiries should be directed to David Bosch, Director of Communications for Gift of Hope. You can contact him at 630/758-2726 or [email protected].

Steps for a Successful Donor Registration Drive• Always stand in front of the Donor Registration Drive table.• Smile and greet visitors. • Use an ice-breaker question.

- Ask, “Are you a registered organ and tissue donor?”• Don’t demand that people become donors. Instead, ask about their hesitations and address

them politely. You can always provide them with information.• Offer to help people complete a form and mention that it will take only 30 seconds to get

them registered.• Make sure all registry forms are complete and legible.• If they’d like more information or are hesitant to register, you can:

- Briefly share your personal experience with donation/transplantation. - Share facts and statistics about donation (e.g., how many lives can be saved by one

donor and how many people are waiting locally/nationally).• Bring a photo of your loved one who was a donor or of your loved one whose life was saved

or enhanced by donation.• Offer a giveaway item if they choose to register — or if they show that they are already

registered — and encourage them to share their wishes with their family and friends.• For people who don’t register on the spot, provide them with an informational brochure and

inform them that they can join the registry at GiftofHope.org. • Thank people for stopping by and supporting or considering donation.• Submit your completed Outcome Report, completed registration cards and reimbursement

requests no later than 10 days after the event to:

Gift of Hope Attn: Heidi Schaiberger425 Spring Lake DriveItasca, IL 60143


Program Overview

8

Hospital Development SupportAdvocates often can make a positive impact through opportunities in hospitals by accompanying Gift of Hope’s Hospital Development staff as they carry out their hospital-based duties. Advocates must be accompanied by Gift of Hope staff for these valuable opportunities to engage with clinicians. Advocates will be asked to participate in these opportunities directly or the opportunities will be advertised through the Advocates for Hope News and Opportunities e-newsletter.

These opportunities are not defined and may encompass any of several types of participation, such as:

• Thank you campaigns• Visitation rounds at hospital ICUs or emergency departments• Clinical education presentations• Booth opportunities• Event support for special events

Note: Gift of Hope has professional staff members who work with hospitals to educate staff and encourage patients and visitors to register their decisions to be organ, tissue and eye donors. To better manage our outreach efforts in hospitals, we ask that Advocates not contact hospitals directly to coordinate outreach opportunities. If you have a personal connection at a hospital, please let us know.

College Campus OutreachGift of Hope encourages college students to educate and encourage their classmates to register their decisions to be lifesaving organ, eye and tissue donors. Students partner with Gift of Hope to plan, host and execute on-site or online donor registration drives. To start a donor drive on your campus, contact Josh Muller at 630/758-2743 or [email protected]. Please notify Gift of Hope in advance if this is an area of interest to you.

WorkplacePartnersProgramOur Workplace Partners Program engages Illinois and northwest Indiana employers in an effort to educate their employees about organ, tissue and eye donation and encourage them to register as lifesaving organ, eye and tissue donors. Advocates are encouraged to get their workplaces involved in hosting virtual donor registration drives. For employers, the campaign is as simple as sending a few e-mails to staff promoting the campaign. To learn more about the Workplace Partners Program, visit DonateLifeWorkplace.org.

African-American Task ForceThe African-American Task Force (AATF) educates the African-American community about donation through a network of chapters located throughout Illinois and northwest Indiana. AATF members include transplant recipients, donor family members, healthcare professionals and others with an interest in promoting organ and tissue donation among the African-American population.

Hispanic Task ForceThe Hispanic Task Force (HTF) reaches out to the Hispanic community to address cultural issues and overcome misconceptions that may prevent many Hispanics from saying “yes” to organ, tissue and eye donation. HTF members come from neighborhoods, schools, businesses, civic organizations and other agencies. Through community-based grassroots programs, they seek to educate people about donation and empower them to increase donation rates among the Hispanic population in Illinois and northwest Indiana.


Program Overview

9

Program Outreach ProceduresHow We Assign Advocates to Volunteer Opportunities

• You may be approached directly based on staff and community requests or because your story suits a particular presentation request.

• You are assigned to opportunities promoted in the Advocates for Hope News and Opportunities e-newsletter on a first-come, first-served basis.

• You must be “active” (meaning you completed the mandatory orientation).• You will receive a confirmation e-mail 3-4 days before the date of the opportunity. The e-mail

confirmation will include all of the specifics for the event/opportunity.• You initiated and organized an outreach opportunity.

Advocate-Initiated OutreachOnce you have identified an outreach opportunity, you must complete the Materials & Advocate Request Form (available at GiftofHope.org). This serves to officially schedule your program and request materials from Gift of Hope, allowing us to keep track of programs and supplies and ensure that we recognize and document your outreach efforts.

Forms should be submitted at least three weeks before the program to allow time for confirmation and supply shipment, if needed.

If additional volunteers are needed, the opportunity will be publicized in the Advocates for Hope News and Opportunities e-newsletter.

Post-Event ProceduresYou are expected to complete an Outcome Report (available at GiftofHope.org) after each event. Outcome Reports are used to gauge the success of the event and capture important Advocate reporting information (event name, date, hours, commute time and completed registration cards).

Volunteer ReimbursementAdvocates who travel for an authorized Gift of Hope event will be reimbursed for mileage and parking fees. Please know we are unable to process reimbursement requests if they are turned in more than 30 days after the date the expenses were incurred. All expenses must be associated with a scheduled program. The reimbursement form can be found at GiftofHope.org.

All completed forms, along with any completed registration cards, should be sent to:

Gift of Hope Organ & Tissue Donor Network Attn: Heidi Schaiberger425 Spring Lake DriveItasca, IL 60143


Program Overview

10

Annual EventsNational Eye Donor Month (March)National Eye Donor Month was started by President Ronald Reagan in 1983, and every March since, a member of Congress has read a proclamation into the Congressional Record to note this special occasion. The purpose of recognizing March as Eye Donor Month is to increase awareness regarding the need for donated eye tissue to sight preservation and restoration transplants.

National Donate Life Month (April)This month-long celebration takes place each April, featuring local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation. National Donate Life Month was instituted by Donate Life America and its partnering organizations in 2003 with the support of then-Secretary of HHS Tommy Thompson.

National Minority Donor Awareness Day (August 1)National Minority Donor Awareness Day is celebrated on August 1 each year and is dedicated to educating individuals on the need for minority donors and the facts about organ and tissue donation. Of the more than 116,000 people on the national transplant waiting list, more than half are minorities. African-Americans make up the biggest portion of minorities on the waiting list at 30 percent, followed by Hispanics, Asians, Native Americans and Pacific Islanders.

National Donor Sabbath (November)Each November, we join with clergy across the country in celebrating National Donor Sabbath, an annual observance to raise awareness of the urgent need for organ, eye and tissue donation among religious communities. We ask you to take part in this observance, held two weekends before the Thanksgiving weekend. This is our opportunity to encourage members of congregations to make faith-based decisions to become organ and tissue donors.


Donation 101


DO

NA

TIO

N10

1

1

Organ DonationOrgans that can be donated and some of the health conditions that might lead to the need for an organ transplant:

• Heart: heart disease (e.g., congenital, coronary, hypertensive cardiomyopathy)

• Lungs: COPD, emphysema, cystic fibrosis• Liver: chronic hepatitis, liver tumors, cirrhosis• Pancreas: Type 1 diabetes• Kidneys: hypertension, diabetes, polycystic kidney disease• Intestine: short bowel syndrome

Some organs and tissue not suitable for transplant can be donated for medical research. This typeof donation will help researchers develop ways to prevent, cure or more effectively treat diseasesand conditions.

TheOrganDonationProcess

• All lifesaving efforts have been made by the hospital medical team. • A referral is called in to Gift of Hope.• Gift of Hope evaluates the potential donor to determine medical suitability for

organ and tissue donation. • Registry designation is honored (first-person authorization).• If potential donor is not registered, the family can provide authorization.• Allocation of organs is determined.• Organ and tissue recovery takes place.• Follow-up with hospital staff and the donor family occurs.

Donation 101

One Organ Donor Can Save Up to 9 Lives.

Organ Allocation System Overview

Transplant Center ProvidesRECIPIENT INFORMATION

• PatientName• Height• Weight• BloodType• TissueType(criticalwithkidneys&pancreas)• Organ(s)Needed• TransplantCenterName• ExactTimeofListing• StatusCode(heart&liveronly)

Gift of Hope ProvidesDONOR INFORMATION

• LocationofDonor• Height• Weight• BloodType• TissueType• SerologyTesting• OrgansAvailableforTransplant• ResultsofTeststoEvaluateOrganFunction

19

Information above from the transplant center and Gift of Hope is entered into the United Network for Organ Sharing (UNOS) database.

UNOS then generates a donor-specific recipient list.

donation_101.indd 1 1/15/2013 11:21:05 AM

Donation 101

2

TheNationalOrganTransplantWaitingList

• A potential organ transplant candidate is first evaluated by specialists at a transplant center.• Patients accepted for placement on a transplant program’s waiting list are registered with the Organ

Procurement and Transplantation Network (OPTN). The OPTN is a centralized computer network linking all organ procurement organizations and transplant centers in the United States.

• The United Network for Organ Sharing (UNOS), an organization under contract with the federal government, maintains the OPTN. This computer network is accessible 24 hours a day, seven days a week.

• When organs from a donor become available, the UNOS computer system automatically ranks potential recipients using a point system.

• Every patient on the transplant waiting list is matched by the computer against donor characteristics.• It’s important to understand that each donor will generate a differently ranked list of patients.• Determining factors in ranking recipients on a donor match list may include: blood type, body size,

tissue type match, length of time on the waiting list, immune state and medical urgency.• The potential recipient with the most points will be ranked as number one, and his/her transplant

center will be offered the available organ first.• Organs are allocated to potential recipients in the local area (near the donor) first. Exceptions are

made for the kidneys, the pancreas and sometimes the liver based on a potential recipient’s transplant status.

• For potential kidney recipients, antigen matching also is included in the list of factors determining their ranking on a donor match list. A good antigen match between a kidney recipient and donor will lower the chances of rejection and provide better, longer kidney function.

HowLongOrgansAreViable

• Heart: 4-6 hours• Lungs: 4-6 hours• Liver: 12-18 hours• Pancreas: 12-18 hours• SmallBowel: 12-18 hours• Kidneys: 36-72 hours (with assistance of a perfusion pump)

These time frames are subject to change as technology advances.

Statistics

• Someone is added to the national organ transplant waiting list every 10 minutes.

• An average of 18 people die daily while waiting for an organ transplant.

• Everyone has the power to say “YES” to donation.

donation_101.indd 2 1/15/2013 11:21:06 AM

Donation 101

3

Understanding Donation After Brain DeathWhatisdonationafterbraindeath?Donation after brain death (DBD) is the process of surgeons recovering organs after a patient is declared brain dead by a hospital physician not involved in the transplant process. In this process, the patient is kept on a mechanical ventilator to maintain organ viability as organs are tested and placed for transplant. The patient then is transferred to an operating room at a hospital or at Gift of Hope where he or she remains on a ventilator with an intact heart rate and blood pressure until organs are recovered.

Whatisbraindeath?Brain death is an established legal diagnosis of death; it is not the same as a coma. According to the American Academy of Neurology: “Brain death is defined as the irreversible loss of function of the brain, including the brainstem.” The time brain death is declared is documented as the time of death indicated on the patient’s death certificate.

Whatarepossiblecausesofbraindeath?

• Trauma to the brain, resulting from a severe head injury due to a motor vehicle accident, fall, blow to the head or a gunshot wound.

• An injury with massive bleeding, such as an aneurysm, or a blood clot in the brain.• Anoxia — loss of oxygen to the brain — resulting from drowning, heart attack, hanging or

carbon monoxide poisoning.

Howisbraindeathdetermined?

• A complete brain death examination is extensive and must be done under controlled conditions.• Only a hospital physician can pronounce brain death. A physician not associated with

donation conducts the required medical tests to make the diagnosis of brain death. These tests are based on sound and legally accepted medical guidelines.

• Tests include a clinical examination to show that the patient has no brain reflexes and cannot breathe on his or her own. A blood flow test (cerebral angiogram) or an EEG (electroencephalo-gram) may also be ordered. These tests are done to confirm the absence of blood flow to the brain or brain activity.

• Organ recovery agencies have the responsibility to verify that brain death has been declared according to applicable state laws.

Ifthepatientisreallydead,whydoeshisorherheartcontinuebeating?As long as the heart has oxygen provided by a ventilator, it can continue beating for a period of time. Without the artificial, mechanical support of a ventilator, the heart would stop beating.

Canapatientwhoisdeclaredbraindeadjustbeinacoma?NO. Brain death is not a coma. A patient in a coma continues to have some brain activity and function. When brain death occurs, all brain function ceases. Once brain death has occurred, there is no chance of recovery. Brain death is death.

donation_101.indd 3 1/15/2013 11:21:06 AM

4

Donation 101

Understanding Donation after Circulatory DeathWhatisdonationaftercirculatorydeath?Donation after circulatory death (DCD) is an option for people who have non-survivable injuries and/or illnesses but do not deteriorate to brain death. It can occur after a physician has determined that a patient has no chance for recovery and the family decides to withdraw support. As in the DBD process, in this process, the patient is kept on a mechanical ventilator to maintain organ viability as organs are tested and placed for transplant. The patient then is transferred to an operating room at a hospital where life-sustaining therapies are withdrawn. After circulatory death is declared by a hospital physician not involved in the donation process, organs are recovered.

• DCD has been a form of donation for more than 30 years. Before the introduction of brain death laws, DCD was the only way in which organs were recovered for transplant.

• DCD is presented as an option to the family ONLY AFTER they have decided to withdraw support.• In general, a patient is considered a candidate for DCD if it is predicted that the heart will cease

functioning within 90 minutes of removal of life-sustaining support. However, each case is evaluated individually.

• If a patient’s heart does not stop beating within 90 minutes, the organs are not recovered.• Death is pronounced by the attending physician, who is independent of the transplant team.

(Death is pronounced after there has been no pulse for five minutes.)• Four organs — kidneys, liver and pancreas — typically are recovered from DCD donors. In rare

cases, the lungs also are recovered.• There is no charge to the family for DCD. Gift of Hope assumes financial responsibility for hospital

charges at the time of donor authorization.

Three Types of Donors

Deceased Donors BRAIN DEATH

• Maintainedonaventilator• Heartbeating

Possible Donations• Heart• Lungs• Liver• Kidneys• Pancreas• SmallIntestine• Corneas/Eyes• HeartValves• Skin• Bone• Veins• Tendons

Organsarerecoveredintheoperatingroomwhileheartfunctionismaintainedwithmechanicalsupport.

Deceased Donors CIRCULATORY DEATH

• NocardiacorrespiratoryfunctionPossible Donations• Corneas/Eyes• HeartValves• Skin• Bone• Veins• Tendons

*In some cases:• Liver• Kidneys• Pancreas• Lungs(rare)

Organsarerecoveredimmediatelyfollowingdeath.Patientwouldhavetopassawayinthehospital.Tissuecanberecoveredupto24hoursafterorganrecovery.

Living Donors

• Livingindividualswhomayormaynotberelatedtothepotentialrecipient(s).

• Potentiallivingdonorsundergoscreeningandcompatibilitytesting.

• Transplantspossiblefromlivingdonorsinclude:kidney,partialliverorlung,bonemarrowandblood.

donation_101.indd 4 1/15/2013 11:21:06 AM

Tissue DonationTissueThatCanBeDonatedandItsBenefits

• Cornea/eye: restores sight for patients with corneal damage or disease

• Heartvalve: replaces heart valve for patients with heart defects, infection or damage

• Bone:saves limbs, replaces joints, heals fractures, combats degenerative diseases, supports facial reconstruction

• Softtissue: repairs or restructures injured tendons and ligaments

• Veins:replaces femoral or saphenous veins for patients with vascular disease or diseased/blocked arteries—limb-saving measure

• Skin: grafts for patients with severe burns or surgical wounds—lifesaving measure • Cartilage: promotes healing for patients with cartilage defects caused by disease, stress to knee

brought on by physical activity and/or age; also used for functional or structural implants in patients undergoing maxillofacial reconstruction

• Adipose:fatty tissue removed from the abdominal area; used to help patients with hard-to-repair injuries like bone fractures

TheTissueDonationProcess

• Cardiac death occurs.• A referral is called in to Gift of Hope.• Gift of Hope evaluates the potential donor to determine medical suitability for tissue donation.• Registry designation is honored (first-person authorization).• If potential donor is not registered, the family can provide authorization.• Tissue recovery takes place.• Follow-up with hospital staff and the donor family occurs.

HowTissueIsAllocated

• There are no waiting lists or rankings to determine who gets donor tissue.• Most tissue is preserved for later use.• Tissue is stored and supplied to physicians when needed later for their patients. • Tissue is first made available to people in the geographic area where it was recovered.

HowLongDonatedTissueisViable

• Skin: 2 years• Heartvalves: 10 years • Bone: 5 years• Tendons: 2 years• Corneas: 7 days

These time frames are subject to change as technology advances.

5

Donation 101

One Tissue Donor Can Save or Enhance the Lives of More Than 25 People.

1

25

donation_101.indd 5 1/15/2013 11:21:06 AM

6

Donation 101

Donor RegistriesWhen a person chooses to join a donor registry, he or she is making a legally binding decision to be a donor. The concept behind donor designation is the same as that of a living will — that an individual who legally documents a personal end-of-life decision will have that decision honored when he or she dies. Most people in Gift of Hope’s service area join a donor registry at a driver services facility in Illinois or a bureau of motor vehicles facility in Indiana. People can also join the Illinois or Indiana registry online at GiftofHope.org.

In Illinois, you must be 18 years old and have a valid driver’s license or state ID card to join the registry. In Indiana, individuals under the age of eighteen can join the registry with written authorization from a parent/legal guardian. Until an individual reaches the age of eighteen, a parent or guardian must also provide authorization at the time of death for donation to take place.

It is a “yes only” registry. You do not choose “total/partial” or specify gifts. Gift of Hope accesses and shares an individual’s donor designation record with his or her family at the time of death, and Gift of Hope provides support for the family while honoring the individual’s decision to donate.

When there is no record of donor designation, the next-of-kin is asked to make the decision to donate on behalf of their loved one.

RegistryFormRules

• Must be at least 18 years old to register as a donor in Illinois.• Must have an Illinois or Indiana driver’s license or state ID card to join the registry in either state.• DO NOT accept registry forms if they are missing any field (only exception is driver’s license num-

ber). Driver’s license is not required if they complete all other fields including their middle initial. • Complete all fields: name, full address, phone number, gender box checked and signature.• Make sure all registry forms are legible.

Registry information will not be used to solicit registrants for any reason. All information is kept confidential.

What to look for on a Driver’s license

donation_101.indd 6 1/15/2013 11:21:14 AM

7

Donation 101

Frequently Asked Questions People often ask our Advocates tough questions for which they may not always know the answers. These questions typically are sensitive and should be answered with the same sensitivity kept in mind. Here is a list of commonly asked questions along with corresponding answers you can use in response.

Whatisorgan,eyeandtissuedonation?Organ, tissue and eye donation is the process of recovering organs and tissue from a deceased person and transplanting them into others to save their lives. Up to nine lives can be saved through organ donation and more than 25 lives can be saved through tissue donation.

Whocandonate?Almost anyone can be a donor. At the time of death, transplant physicians and Gift of Hope specialists determine the medical suitability of organs, eyes, tissue and corneas.

Whatifsomeonetellsyoutheyaretoooldortoosick?Organ donation has no defined cut-off age. Organs have been successfully transplanted from donors well into their 70s, 80s and even 90s. The decision to use donor organs is based on strict medical criteria, not age or poor health. People should not rule themselves out as organ donors. Medical professionals will determine at the time of death whether a donor’s organs and tissue are suitablefor transplantation.

Doesapersonhavetodietobecomeanorgandonor?No. Living people can donate a kidney or part of the liver or lung. However, Gift of Hope recovers organs only from deceased donors.

Cansomeonewhoisanorganrecipientbeadonor?Ifso,canheorshebeadonorwiththatsameorganorpartofit?This depends highly on the circumstance of the patient’s cause of death. In this situation, the type of death typically must be brain death, but someone who dies from circulatory failure may be a suitable donor if the cause of death is unrelated to the recipient organ. Under these circumstances, an organ recipient may donate any viable organ, including a healthy recipient organ. A person who has been an organ recipient may not be a tissue donor because of the impact the immunosuppressive drugs taken after the transplant have on the body.

HowdoIregistermydonationdecision?You can register your decision to be an organ and tissue donor online at GiftofHope.org, at your local driver services or bureau of motor vehicles facility, or by filling out a written donor registration form. Please share your decision to be an organ and tissue donor with your family.

WhocansignupontheIllinoisandIndianaregistries?The Illinois and Indiana registries allow people who are at least 18 years of age to register their decision to be an organ and tissue donor upon death. For registrants and non-registrants under 18, parents (or legal guardians) make the decision about organ and tissue donation at the appropriate time.

Ismydriver’slicenseorstateIDcardenoughtovalidatemydonordesignation?Yes, but you should always share your decision with your family and friends. If you register your designation at the driver services or bureau of motor vehicles facility when you obtain your driver’s license or state ID, you are added to the registry. By signing up with the registry, your desire to donate is stored in a secure, confidential database. Should your death result in the opportunity for you to donate, an official record of your donor designation will be readily available and your wishes to donate will be respected.

donation_101.indd 7 1/15/2013 11:21:14 AM

8

Donation 101

Howdopeopleinotherstatessignup?Isthereanationalregistry?All states in the continental United States honor individual state registries; there is no national registry. State laws govern all matters concerning organ and tissue donation. In addition, organs may not be allocated to the registration state. For example, if an Illinois resident on the registry dies in Florida, Florida will recognize the wishes of the donor, but the state will try to allocate the organs there first. If the organs do not match with any patients in Florida, they will then be allocated to surrounding states, then nationally, then internationally, if needed. For information on how to become a donor in other states, go to Donatelife.net and select the state in question.

IfsomethingshouldhappentomewhileIamtraveling,whatroledoesmyregistrationplay?All matters concerning organ and tissue donation are under the jurisdiction of each state’s or country’s respective laws. While your donor registration will not serve as legally binding authorization for donation outside the state, it will serve as a clear indication of your wish to donate and will be shared with your family when they are approached by the local recovery agency.

IfIhaveanadvancedirective,shouldIalsosignupintheregistry,orwilltheadvancedirectivebeenough?You should do both. Due to the rapid and emotional nature of events surrounding sudden death, families often lack the time needed to check legal documents before being approached about donation. Without enrolling in the registry, your decision may not be expressed. However, because the registry is checked in all potential donation cases before caregivers approach the family, we can share proof of registration with family members when donation is discussed, and your wishes will be honored. If an individual is not in the registry, the individual’s next-of-kin can make the donation decision on behalf of their loved one.

Whatifmyfamilymembersareopposedtodonation?Once an individual has joined the organ and tissue donor registry, that individual’s decision must be honored by law. The registered donor’s designation authorizes organ and tissue recovery. When a donation opportunity occurs, a representative from an organ procurement organization like Gift of Hope walks family members and next–of-kin through the donation process so they know and understand how the recovery agency will carry out a decision to be a donor. Family members may not override the decision. Generally, if a loved one dies suddenly, it will ease the family’s pain to already know their loved one’s wishes regarding donation. For this reason, we recommend that you share your wishes with your family today.

Willmedicalornursingcarebechangedbecauseofmydecisiontobeadonor?No. The quality of medical care is unaffected by your status as a registered donor. Every attempt is made to save your life. In fact, patients must receive the most aggressive lifesaving care to be potential organs donors. If a patient’s heart stops during lifesaving efforts, organs cannot be transplanted. Organ and tissue donation is considered only after a physician unrelated to the donation and transplantation process has pronounced a person dead and the family has been consulted.

Howdoorganandtissuerecoveryprogramslearnofpotentialdonors?When medical personnel at a donor hospital in Gift of Hope’s service area identify a potential donor, they use a 24-hour number to contact Gift of Hope’s Donor Resource Center. A Gift of Hope representative then assists the referring hospital and donor family with the medical, legal and ethical aspects of donation.

donation_101.indd 8 1/15/2013 11:21:14 AM

9

Donation 101

Ifonehasspecifiedinhisorherwillhowlongheorshewantstoremainonlifesupport,willthisaffectthedonationprocess?Typically, after brain death has been declared and authorization obtained, patients remain on ventilator support until the recovery process can begin. Brain death is different than a coma. A comatose patient still has brain activity. When a patient is brain dead, all brain function, including brain stem function, has ceased. The longer a person is on ventilator support after brain death, the more unstable organs become. This is particularly true with the heart and lungs.

Whoisresponsibleformanagingtheorgandonationprocess?The designated, not-for-profit organ procurement organization (OPO) is responsible for coordinating and managing the donation process. Only OPOs’ authorized staff may access both the donor and recipient medical information that makes accurate matching possible. Organ recovery and allocation is regulated by the Centers for Medicare & Medicaid Services, a division of the U.S. Department of Health and Human Services.

Howaredonorsevaluatedforsuitabilitytodonate?Before donation, all potential donors undergo a comprehensive screening that includes a physical examination and a medical and social history. Once death has been declared and authorization is received through the donor registry (or from the family when someone is not a registered donor), medical professionals conduct tests to determine whether the patient is a suitable donor. Blood tests and other standard medical procedures determine the patient’s blood type, kidney and liver function, exposure to transmissible diseases, and tissue typing for the purpose of matching the kidneys to recipients. These tests are medically necessary to save as many lives as possible. Once the organs and tissue are recovered, tests are performed on blood and organs to screen for disease and bacterial and other infections. In addition, screens for HIV, hepatitis B and C and syphilis are required by the U.S. Food and Drug Administration, United Network for Organ Sharing and American Association of Tissue Banks for all donated tissue.

Whatisthedifferencebetweenbraindeathandcirculatorydeathinrelationtodonation?Organs are most commonly recovered after brain death, when brain and brain stem function has permanently stopped. Brain death is not the same as being in a coma. No one has ever regained consciousness from or survived after brain death. Brain death occurs in about 1 in 100 hospital deaths. Circulatory death is when the heart stops beating. Although organ recovery is possible after circulatory death, it is a less common form of donation. However, tissue is commonly recovered in both brain and circulatory death circumstances. In no cases are organs or tissue donated until the donor has been declared legally dead by a physician unrelated to the donation and transplantation process.

Howareorgansdistributedtopatientswaitingforatransplant?Each patient waiting for an organ transplant is listed with the United Network for Organ Sharing, commonly known as UNOS. This agency is responsible for ensuring that donated organs are distributed equitably and fairly. When a donor is identified, the donor’s blood type, tissue type, body weight, body size, etc., are matched against the list of patients currently waiting for a transplant. In addition, the recipient’s severity of illness and time on the waiting list are factored into the matching process.

Ifafamilymemberneedsanorganatthetimeofmydeath,canIspecifythatheorsheistoreceiveit?Yes. This is referred to as “directed donation.” Directed donation of an organ to a specific individual is legal, but it must be done at the time of donation (organs may not be directed to a specified group of individuals). Directed donation is best supported by an advance directive or may be granted by next-of-kin at the time of donation.

donation_101.indd 9 1/15/2013 11:21:15 AM

Donation 101

Howlongmustapatientwaitforatransplant?The time a patient spends on the waiting list for an organ can vary from a few days to several years. The length of his or her wait is affected by several factors, such as the urgency of the medical condition and the availability of donated organs. Tissue banks have a very limited supply of donated skin, bone, heart valves, tendons and corneas. All patients waiting for an organ or tissue transplant depend upon the generosity of others.

Whenmustorgansandtissueberemoved?Organs must be removed as soon as possible after death has been declared, usually within 12 to 36 hours. Tissue recovery takes place after organ recovery. Tissue can be recovered up to 24 hours after organ recovery.

Whathappenswhendonatedorgansareremoved?The recipient transplant team comes to the hospital where the donor is located. Once the organs are removed, they are cooled and preserved. The team then returns to the hospital where transplantation of that organ will take place.

Howlikelyarerecipientstorejecttransplantedorgansortissue?Each person’s immune system reacts differently to transplanted organs, so there is no set formula to determine whether an organ will be rejected. Anti-rejection medication is required to control this reaction. New medications are continually being developed to reduce the risk of transplant rejection in patients. With these new medications, rejection rates are as low as 10-15 percent of patients, and one-year transplanted organ survival has improved to 95 percent. Rejection of tissue is uncommon.

Whathappensiftheorganisrejected?Specialized medications are administered and can often correct the rejection. If the rejection cannot be corrected, lifesaving measures must be taken. Attempts may be made to locate another organ for re-transplantation. Due to the shortage of donated organs, many recipients die before another organ becomes available. Fortunately, kidney/pancreas transplant patients can return to dialysis or insulin therapy while awaiting a re-transplant.

Dodonorfamiliesandrecipientsevermeet?The identities of all parties involved in organ and tissue donation are kept confidential. The donor family and the transplant recipient may receive basic information such as age, gender, profession and general location. Individually, the recipient may be told the circumstances of the donor’s death. The donor family may be informed of the transplants that were performed and receive information on improvements to the health of the recipients. Gift of Hope and other organ procurement agencies facilitate anonymous correspondence and meetings initiated by either the donor family or recipient as agreed to by both parties.

10

donation_101.indd 10 1/15/2013 11:21:15 AM

Donation 101

Canorgansbesold?Buying and selling organs for the purpose of transplantation is illegal in the United States. Under the Uniform Anatomical Gift Act of 1984, human organs cannot be bought or sold, and violators are subject to fines and imprisonment. This strict regulation prevents any type of ”black market” for organs in the United States. Illegal sales are impossible because recovered organs must be appropriately matched to recipients and distributed according to national policy established by the United Network for Organ Sharing.

Willorganandtissuedonationinterferewithfuneralarrangementsorchangethedonor’sappearance?The body is treated with great respect and dignity throughout the process, and the donor’s appearance following donation still allows for an open-casket visitation. Once the organ and tissue recovery process is completed, the body is released to the donor’s family. The donation process usually is completed within 24 to 36 hours, and the family may then proceed with funeral arrangements.

Willmyfamilybechargedfordonation?No. There is no cost to the donor’s family for organ and tissue donation. The organ procurement organization (OPO) assumes all costs associated with recovering and processing organs and tissue for transplant once death has been declared and authorization is confirmed or obtained. These costs are never passed on to the donor family. An OPO’s business model, culture and values are all built on respecting and appreciating the gift of donation. Transplant centers eventually reimburse these costs to OPOs after a transplant is completed. Transplant centers then bill private and public insurance plans to cover their expenses. Hospital expenses incurred before the donation of organs or tissue and funeral expenses remain the responsibility of the donor’s family.

Doesmyreligionsupportorganandtissuedonation?Religious leaders around the world support donation as an expression of the highest humanitarian ideals. The gift of an organ or tissue essential to the life of another human being is consistent with the principles of Judeo-Christian teachings. If you have any questions in this regard, consult your religious leader or visit GiftofHope.org.

Whatisacornea?A cornea is a clear, dime-sized tissue found at the front of the eye. It functions like a window, allowing light to pass through the eye.

Whatisacorneatransplant?A cornea transplant is a surgical procedure that replaces a diseased or infected cornea with a healthy, donated cornea. Corneal transplantation is the most frequently performed transplant procedure.

Whocanbeacorneadonor?Anyone can donate eyes. If the corneal tissue is not transplantable, due to age or medical condition, donation can be considered a gift for research and education.

IfIhavebadvision,canIstillbeacorneadonor?Regardless of a donor’s vision or the existence of cataracts and other conditions of the eye, corneas have the potential to restore sight to a person with corneal blindness.

Howcanresearchandeducationbenefitfromeyedonation?Each year, more than 30,000 eyes are donated in the U.S. for research and education involving glaucoma, diabetic retinopathy, macular degeneration and other sight disorders. These studies advance the knowledge of causes and effects of different eye conditions, leading to new treatments and cures.

11

donation_101.indd 11 1/15/2013 11:21:15 AM

12

Donation 101

Aretherichandfamousgivenprioritywhenitcomestoallocatingorgans?No. The rich and famous are not given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but within the donation and transplantation system, they are treated no differently than anyone else. Each waiting transplant candidate is matched against the donor characteristics using the UNet computer system, which ranks potential recipients in order according to allocation policies. Celebrities receive attention no matter what they do, including getting a transplant. Most of the 28,000 patients who receive lifesaving organ transplants each year receive no media attention.

Canprisonersdonate?Individuals who are imprisoned at some point in their life can be evaluated as potential donors at the time of their death, but they would be considered high-risk donors. A detailed medical and social history is obtained from medical records and family members as part of the donor evaluation process, as it is with all other potential donors.

Cannon-residentaliensinourcountrydonateandreceiveatransplant?Non-resident aliens can both donate and receive transplants in the United States. UNOS guidelines specify that no more than 5 percent of transplants may be performed on non-resident aliens.

Doesmyregistrationgrantauthorizationforwholebodydonation?Registering as an organ and tissue donor does not grant permission for your whole body to be donated to a medical school. Organ and tissue donation for transplant or research is not the same as willed body donation. Willed whole body programs are usually associated with teaching hospitals at major universities, and arrangements must be made in advance directly with the institutions. Please note: Should you choose to consent to whole body donation, you may not be able to donate your organs or tissue for transplantation.

If whole body donation is to occur and the decedent is in the donor registry, the decedent will be both a tissue and research donor. Families often choose whole body donation for research because they cannot afford funeral services and know that cremation and return of the ashes is a free service to them if they choose whole body donation for medical research. Science care (whole body donation) does not trump the registry.

If the whole body is sent to a university for research, then Gift of Hope cannot proceed with donation.

HowisGiftofHopefunded?Gift of Hope is a not-for-profit organization. As a certified organ procurement organization, Gift of Hope is allowed under federal law to bill transplant centers a set acquisition fee for each organ provided for transplant. This fee includes the medical expenses and transportation costs related to the donation process. THEREISNOCHARGEFORTHEDONATEDORGAN. This acquisition fee becomes a part of the total amount billed to the organ recipient or his or her insurance carrier by the transplant center. Similarly, Gift of Hope recovers costs related to the tissue donation process from the companies that process the tissue into useable medical devices and products for surgery.

donation_101.indd 12 1/15/2013 11:21:15 AM

13

Donation 101

Religious ViewsA common question that sometimes arises when people are asked to consider donation of organs and tissue is, “Will my decision be compatible with my religious beliefs?” Most religions support organ donation and transplantation. If you have any questions about your religion’s stance on donation, please consult your religious leader.

AME&AMEZion(AfricanMethodistEpiscopal)Organ and tissue donation is viewed as an act of neighborly love and charity by these denominations. They encourage all members to support donation as a way of helping others.

AmishThe Amish will consent to transplantation if they believe it is for the well-being of the transplant recipient. John Hostetler, world-renowned authority on Amish religion and professor of anthropology at Temple University in Philadelphia, says in his book, Amish Society, “The Amish believe that since God created the human body, it is God who heals. However, nothing in the Amish understanding of the Bible forbids them from using modern medical services, including surgery, hospitalization, dental work, anesthesia, blood transfusions or immunization.”

AssembliesofGodThe Church has no official policy on organ and tissue donation. The decision to donate is left up to the individual. Donation is highly supported by the denomination.

BaptistThough Baptists generally believe that organ and tissue donation and transplantation are ultimately matters of personal conscience, the nation’s largest protestant denomination, the Southern Baptist Convention, adopted a resolution in 1988 encouraging physicians to request organ donation in appropriate circumstances and to “encourage voluntarism regarding organ donations in the spirit of stewardship, compassion for the needs of others and alleviating suffering.” Other Baptist groups have supported organ and tissue donation as an act of charity and leave the decision to donate up to the individual.

BrethrenWhile no official position has been taken by the Brethren denominations, according to Pastor Mike Smith, a consensus exists among the National Fellowship of Grace Brethren that organ and tissue donation and transplantation is a charitable act as long as it does not impede the life or hasten the death of the donor or does not come from an unborn child.

BuddhismBuddhists believe that organ and tissue donation is a matter of individual conscience and place high value on acts of compassion. Reverend Gyomay Masao, president and founder of the Buddhist Temple of Chicago says, “We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives.” The importance of letting loved ones know your wishes is stressed.

donation_101.indd 13 1/15/2013 11:21:15 AM

14

Donation 101

CatholicismCatholics view organ and tissue donation as an act of charity and love. Transplants are morally and ethically acceptable to the Vatican. According to Father Leroy Wickowski, Director of the Office of Health Affairs of the Archdiocese of Chicago, “We encourage donation as an act of charity. It is something good that can result from tragedy and a way for families to find comfort by helping others.” Pope John Paul II has stated, “The Catholic Church would promote the fact that there is a need for organ donors and that Christians should accept this as a ‘challenge to their generosity and fraternal love’ so long as ethical principles are followed.”

ChristianChurch(DisciplesofChrist)The Christian Church encourages organ and tissue donation, stating that “we were created for God’s glory and for sharing God’s love.” A 1985 resolution, adopted by the General Assembly, encourages “members of the Christian Church (Disciples of Christ) to enroll as organ donors and prayerfully support those who have received an organ transplant.”

ChristianScienceThe Church of Christ Scientist does not have a specific position on organ donation. According to the First Church of Christ Scientist in Boston, Christian Scientists normally rely on spiritual, instead of medical, means of healing. They are free, however, to choose whatever form of medical treatment they desire, including a transplant. The religion views organ and tissue donation an individual decision.

EpiscopalThe Episcopal Church passed a resolution in 1982 that recognizes the life-giving benefits of organ, blood and tissue donation. All Christians are encouraged to become organ, blood and tissue donors “as part of their ministry to others in the name of Christ, who gave His life that we may have life in its fullness.”

GreekOrthodoxAccording to Reverend Dr. Milton Efthimiou, Director of the Department of Church and Society for the Greek Orthodox Church of North and South America, “The Greek Orthodox Church is not opposed to organ donation as long as the organs and tissue in question are used to better human life, i.e., for trans-plantation or for research that will lead to improvements in the treatment and prevention of disease.”

GypsiesGypsies are a people of different ethnic groups without a formalized religion. They share common folk beliefs and tend to be opposed to organ and tissue donation. Their opposition is connected with their beliefs about the afterlife. Traditional belief contends that for one year after death the soul retraces its steps. Thus, the body must remain intact because the soul maintains its physical shape.

HinduismAccording to the Hindu Temple Society of North America, Hindus are not prohibited by religious law from donating their organs. This act is an individual’s decision. H.L. Trivedi, in Transplantation Proceedings, stated that, “Hindu mythology has stories in which the parts of the human body are used for the benefit of other humans and society. There is nothing in the Hindu religion indicating that parts of humans, dead or alive, cannot be used to alleviate the suffering of other humans.”

donation_101.indd 14 1/15/2013 11:21:15 AM

15

Donation 101

IndependentConservativeEvangelicalGenerally, Evangelicals have no opposition to organ and tissue donation. Each church is autonomous and leaves the decision to donate up to the individual.

IslamIslam believes in the principle of saving human lives. According to A. Sachedina in his Transplantation Proceedings (1990) article, “Islamic Views on Organ Transplantation,” “The majority of the Muslim scholars belonging to various schools of Islamic law has invoked the principle of priority of saving human life and have permitted the organ transplant as a necessity to procure that noble end.

Jehovah’sWitnessesAccording to the Watch Tower Society, Jehovah’s Witnesses believe donation is a matter of individual decision. Jehovah’s Witnesses often are assumed to be opposed to donation because of their belief against blood transfusion. However, this merely means that all blood must be removed from the organs and tissue before being transplanted.

JudaismAll four branches of Judaism (Orthodox, Conservative, Reform and Reconstructionalist) support and encourage donation. According to Orthodox Rabbi Moses Tendler, Chairman of the Biology Department of Yeshiva University in New York City and Chairman of the Bioethics Commission of the Rabbinical Council of America, “If one is in the position to donate an organ to save another’s life, it’s obligatory to do so, even if the donor never knows who the beneficiary will be. The basic principle of Jewish ethics — ‘the infinite worth of the human being’ — also includes donation of corneas, since eyesight restoration is considered a life-saving operation.” In 1991, the Rabbinical Council of America (Orthodox) approved organ donation as permissible, and even required, from brain-dead patients. The Reform movement looks upon the transplant program favorably and Rabbi Richard Address, Director of the Union of Ameri-can Hebrew Congregations Bio-Ethics Committee and Committee on Older Adults, states that “Judaic Response materials provide a positive approach and by and large the North American Reform Jewish community approves of transplantation.”

LutheranIn 1984, the Lutheran Church in America passed a resolution stating that donation contributes to the well-being of humanity and can be “an expression of sacrificial love for a neighbor in need.” They call on members to consider donating organs and to make any necessary family and legal arrangements, including the use of a signed donor card.

MennoniteMennonites have no formal position on donation, but they are not opposed to it. They believe the decision to donate is up to the individual or his or her family.

MoravianThe Moravian Church has made no statement addressing organ and tissue donation or transplantation. Robert E. Sawyer, President, Provincial Elders Conference, Moravian Church of America, Southern Province, states, “There is nothing in our doctrine or policy that would prevent a Moravian pastor from assisting a family in making a decision to donate or not to donate an organ.” Therefore, it is a matter of individual choice.

Mormon(ChurchofJesusChristofLatter-DaySaints)The Church of Jesus Christ of Latter-Day Saints believes the decision to donate is an individual one made in conjunction with family, medical personnel and prayer. They do not oppose donation.

donation_101.indd 15 1/15/2013 11:21:15 AM

16

Donation 101

PentecostalPentecostals believe that the decision to donate should be left up to the individual.

PresbyterianPresbyterians encourage and support donation. They respect a person’s right to make decisions about his or her own body.

Seventh-DayAdventistDonation and transplantation are strongly encouraged by Seventh-Day Adventists. They have many transplant hospitals, including Loma Linda in California. Loma Linda specializes in pediatric heart transplantation.

ShintoIn Shinto, the dead body is considered to be impure and dangerous and, thus, quite powerful. “In folk belief context, injuring a dead body is a serious crime. . . .,” according to E. Namihira in his article, Shinto Concept Concerning the Dead Human Body. “To this day it is difficult to obtain consent from bereaved families for organ donation or dissection for medical education or pathological anatomy . . . (because) the Japanese regard them all in (the) sense of injuring a dead body.” Families often are concerned that they not injure the itai, the relationship between the dead person and the bereaved people.

SocietyofFriends(Quakers)Organ and tissue donation is believed to be an individual decision. The Society of Friends does not have an official position on donation.

UnitarianUniversalistOrgan and tissue donation is widely supported by Unitarian Universalists. They view it as an act of love and selfless giving.

UnitedChurchofChristReverend Jay Litner, Director, Washington Office of the United Church of Christ Office for Church in Society, states, “United Church of Christ people, churches and agencies are extremely and over whelm-ingly supportive of organ sharing. The General Synod speaks on more controversial issues, and there is no controversy about organ sharing, just as there is no controversy about blood donation in the denomi-nation. While the General Synod has never spoken about blood donation, blood donation rooms have been set up at several General Synods. Similarly, any organized effort to get the General Synod delegates or individual churches to sign organ donation cards would meet with generally positive responses.”

UnitedMethodistThe United Methodist Church issued a policy statement on organ and tissue donation. In it, the Church states that, “The United Methodist Church recognizes the life-giving benefits of organ and tissue donation, and thereby encourages all Christians to become organ and tissue donors by signing and carrying cards or driver’s licenses, attesting to their commitment of such organs upon their death, to those in need, as a part of their ministry to others in the name of Christ, who gave his life that we might have life in its fullness.” A 1992 resolution states, “Donation is to be encouraged, assuming appropriate safeguards against hastening death and determination of death by reliable criteria.” The resolution further states, “Pastoral-care persons should be willing to explore these options as a normal part of conversation with patients and their families.”

donation_101.indd 16 1/15/2013 11:21:15 AM

17

Donation 101

Glossary of TermsAcuteRejection:The host recognizes the graft as foreign and mounts an immunological attack on the graft tissue. Most acute rejections occur in the first year. Allocation:The process of determining how organs are distributed. Allocation includes the system of policies and guidelines, which ensure that organs are distributed in an equitable, ethical and medically sound manner.

Allograft: An organ or tissue that is transplanted from one to another of the same species, e.g., human to human. Example: a transplanted kidney.

Anti-RejectionDrugs(immunosuppressivedrugs):Drugs that are used to prevent and/or treat rejection of a transplanted organ.

Antibody: A protein molecule produced by the immune system in response to a foreign body, such as a virus or a transplanted organ. Since antibodies fight the transplanted organ and try to reject it, recipients are required to take anti-rejection (immunosuppressive) drugs.

Antigen: An antigen is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment such as chemicals, bacteria, viruses, pollen or foreign tissue. An antigen may also be formed within the body, as with bacterial toxins.

Biopsy: A tissue sample removed from the body and examined under a microscope to diagnose for disease, determine organ rejection or assess donated organs or tissue.

BloodVessels: The veins, arteries and capillaries through which blood flows in the body. Certain blood vessels can be donated and transplanted.

BrainDeath: Irreversible cessation of brain and brain stem function; characterized by absence of electrical activity in the brain, blood flow to the brain and brain function as determined by clinical assessment of responses. A brain-dead person is dead, but his or her cardiopulmonary function may be maintained artificially for some time. Cadaveric: An inappropriate term. The preferred term is “deceased donor transplant.” CadavericTransplant: The transplant of an organ from a deceased donor. The preferred term is ”deceased donor transplant.” Candidate: A person registered on the organ transplant waiting list. When an organ is offered on behalf of the candidate, he or she is then referred to as a potential transplant recipient, or PTR. Cardiac: Having to do with, or referring to, the heart. Chronic: Developing slowly and lasting for a long time, possibly the rest of a person’s life. For example: chronic kidney failure.

donation_101.indd 17 1/15/2013 11:21:15 AM

18

Donation 101

ChronicRejection: Slow, continuous immunological attack of the host immune system on the transplanted organ usually resulting in progressive loss of organ function. Cirrhosis: A disease of the liver in which normal, healthy tissue is replaced with nonfunctioning fibrous scar tissue and healthy, functioning liver cells are lost; usually occurs when there is a lack of adequate nutrition, an infection or damage caused by alcohol abuse.

Cornea: The clear, dime-sized tissue found at the front of the eye. It functions like a window, allowing light to pass through the eye.

Corticosteroid: A synthetic hormone used to reduce the body’s normal immune reaction to infection and foreign tissue, such as a transplanted organ. Prednisone is a corticosteroid.

Criteria(MedicalCriteria): A set of clinical or biologic standards or conditions that must be met. Cyclosporine: A drug used to prevent rejection of the transplanted organ by suppressing the body’s defense system. Considered an immunosuppressant. DeceasedDonor: An individual from whom at least one solid organ is recovered for transplantation after suffering brain death or cardiac death.

DeceasedDonorTransplant: The transplant of an organ from a deceased donor. DepartmentofHealthandHumanServices(DHHSorHHS): The department of the federal government responsible for health-related programs and issues. It oversees the operations of the Centers for Medicare & Medicaid Services, which, in turn, governs the operations of federally designated organ procurement organizations such as Gift of Hope. Dialysis: A mechanical process designed to partially perform kidney functions, including correcting the balance of fluids and chemicals in the body and removing wastes. (See Hemodialysis and Peritoneal Dialysis.)

DominoTransplant: A procedure in which an organ is removed from one transplant candidate andimmediately transplanted into a second patient, with the first patient receiving a new organ from a deceased donor. DonationServiceArea(DSA):The geographic area designated by the Centers for Medicare & Medicaid Services that is served by one organ procurement organization (OPO), one or more transplant centers and one or more donor hospitals. Formerly referred to as Local Service Area or OPO Service Area. Gift of Hope’s DSA is the northern three quarters of Illinois and Lake and Porter counties in northwest Indiana.

donation_101.indd 18 1/15/2013 11:21:15 AM

19

Donation 101

Donor: Someone from whom at least one organ or tissue is recovered for transplantation. A deceased donor is a patient who has been declared dead using either brain death or cardiac death criteria, from whom at least one vascularized solid organ is recovered for organ transplantation. A living donor is one who donates an organ or segment of an organ for transplantation. DonorRegistries: Available 24 hours a day, seven days a week, online registries give authorized professionals access to a confidential database of registered organ donors, allowing easy and quick confirmation of an individual’s authorization for organ donation. All registries are voluntary. Some are affiliated with the local motor vehicle bureau, and others are operated independently or by an organ procurement organization. End-StageOrganDisease: A disease that leads to the permanent failure of an organ. Ethnicity: For Organ Procurement Transplantation Network data purposes, the use of categories such as White; Black or African-American; Hispanic; Asian, American Indian/ Alaskan Native; Pacific Islander; Multiracial.

ExpandedCriteriaDonor(ECD)Kidney: A kidney donated for transplantation from any brain-dead donor over the age of 60; or from a donor over the age of 50 with two of the following: a history of hypertension, a terminal serum creatinine greater than or equal to 1.5 mg/dl, or death resulting from a cerebral vascular accident (stroke). This definition applies to the allocation of deceased donor kidneys. Graft: A transplanted organ or tissue. GraftSurvival:The length of time an organ functions successfully after being transplanted. Hemodialysis: A treatment for kidney failure where the patient’s blood is passed through a filtering membrane to remove excess fluid and wastes. Hepatitis: A viral infection or non-specific inflammation of the liver that can lead to liver failure. Hepatitis C is the leading cause of liver failure that leads to transplantation. HighBloodPressure(hypertension)(HTN): When the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. High blood pressure causes the heart to pump harder to move blood through the body. High blood pressure can cause kidney failure and heart disease if not treated.

Histocompatibility: The examination of human leukocyte antigens (HLA) in a patient often referred to as “tissue typing” or “genetic matching.” Tissue typing is routinely performed for all donors and recipients in kidney and pancreas transplantation to help match the donor with the most suitable recipients to help decrease the likeli-hood of rejecting the transplanted organ. (See Human Leukocyte Antigen System.) HumanImmunodeficiencyVirus(HIV): The virus destroys cells in the immune system, which makes it difficult for the body to fight off infections, toxins, poisons and diseases. HIV causes AIDS, a late stage of the virus characterized by serious infections, malignancies and neurologic dysfunctions.

Hypertension\HighBloodPressure: Occurs when the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. Hypertension causes the heart to pump harder to move blood through the body. It can cause kidney failure and heart disease if not treated.

donation_101.indd 19 1/15/2013 11:21:15 AM

20

Donation 101

ImmuneResponse: The body’s natural defense against foreign objects or organisms, such as bacteria, viruses or transplanted organs or tissue. ImmuneSystem: The organs, tissue, cells and cell products in the body that work to find and neutralize foreign substances including bacteria, viruses and transplanted organs. Immunosuppression: Prevention or inhibition of the immune system to respond to foreign substances in the body. Medications often used to prevent a recipient’s immune system from rejecting a transplanted organ or tissue include prednisone, methylprednisolone, azathioprine, mycophenolate mofetil, cyclosporine, tacrolimus and sirolimus, among others. Immunosuppressive: Relating to the weakening or reducing of your immune system’s responsesto foreign material; immunosuppressive drugs reduce your immune system’s ability to reject a transplanted organ.

InductionTherapy: Medications given for a short, finite period in the peri-operative period to prevent acute rejection. Although the drugs may be continued after discharge for the first 30 days after transplant, they will not be used long-term for immunosuppressive maintenance. Infection: A condition that occurs when a foreign substance, such as bacteria, enters your body, causing your immune system to fight the intruder. All transplant recipients can get infections more easily because their immune systems are suppressed. It is more difficult for them to recover from infection (such as urinary tract infections, colds and the flu). InformedConsent: A person’s voluntary agreement, based upon adequate knowledge and understand-ing of relevant information, to participate in research or to undergo a diagnostic, therapeutic or preven-tive procedure. Kidneys: A pair of organs that remove wastes from the body through the production of urine. All of the blood in the body passes through the kidneys about 20 times every hour. Kidneys can be donated from living and deceased donors and transplanted into patients with kidney failure. Liver: The largest organ in the body, made up of a spongy mass of wedge-shaped lobes. The liver secretes bile, which aids in digestion, helps process proteins, carbohydrates, and fats and stores substances like vitamins. It also removes wastes from the blood. A living donor can give part of his or her liver, after which the liver will regenerate itself in both the donor and recipient.

Match: The compatibility between the donor and the recipient. The more appropriate the match,the greater the chance of a successful transplant. Medicaid: A partnership between the federal government and individual states to share the cost of providing medical coverage for recipients of welfare programs and allowing states to provide the same coverage to low-income workers not eligible for welfare. Programs vary greatly from state to state.

donation_101.indd 20 1/15/2013 11:21:15 AM

21

Donation 101

Medicare: The federal program that provides hospital and medical insurance, through Social Security taxes, to people age 65 and over, those who have permanent kidney failure and certain people with disabilities. MultipleListing: Being on the waiting list for the same organ at more than one transplant center. NationalOrganTransplantAct(NOTA): The National Organ Transplant Act (1984 Public Law 98-507), approved October 19, 1984, and amended in 1988 and 1990. It:

• Outlawed the sale of human organs• Provided for the establishment of the Task Force on Organ Transplantation• Authorized the Secretary of Department of Health and Human Services to make grants for the

planning, establishment, and initial operation of qualified organ procurement organizations• Established the formation of the Organ Procurement and Transplantation Network (OPTN) and the

Scientific Registry of Transplant Recipients (SRTR). Organ: A part of the body made up of tissue and cells that enable it to perform a particular function. Transplantable organs are the heart, liver, lungs, kidneys, pancreas and intestine. OrganDonation: To give an organ or a part of an organ to be transplanted into another person. Organ donation can occur with a deceased donor, who can give kidneys, pancreas, liver, lungs, heart and intestine or with a living donor, who can give a kidney or part of the liver, a lung or the intestine. OrganPreservation: Methods used to preserve organs while they are out of the body, between procurement from a donor and transplantation into a recipient. OrganProcurement: The removal or retrieval of organs from a donor for transplantation. OrganProcurementOrganization(OPO): An organization designated by the Centers for Medicare & Medicaid Services and responsible for the procurement of organs for transplantation and the promotion of organ donation. OPOs serve as the vital link between the donor and recipient and are responsible for identifying donors and retrieving, preserving and transporting organs for transplantation. They are also involved in data follow-up on deceased organ donors. As a resource to the community, OPOs engage in public education on the critical need for organ and tissue donation. (See also Donation Service Area.) Pancreas: The irregularly shaped gland that lies behind the stomach and secretes pancreatic enzymes into the small intestine to aid in the digestion of proteins, carbohydrates and fats. Islet cells within the pancreas secrete glucagon, which regulates blood sugar levels and insulin, which lowers blood sugar levels. If the pancreas fails, the individual becomes diabetic and may need to take insulin. The pancreas can be donated and transplanted. PeritonealDialysis: A treatment technique for kidney failure that uses the patient’s own body tissue inside of the abdominal cavity to act as a filter. The intestine lies in the abdominal cavity, the space between the abdominal wall and the spine. A plastic tube called a “dialysis catheter” is placed through the abdominal wall into the abdominal cavity. A special fluid is then flushed into the abdominal cavity and washes around the intestine. The lining (peritoneum) of the abdominal cavity and of intra-abdominal organs acts as a filter between this fluid and the blood stream. By using different types of solutions, waste products and excess water can be removed from the body through this process.

donation_101.indd 21 1/15/2013 11:21:15 AM

22

Donation 101

Procurement: The surgical procedure of removing organs, tissue or both from a donor. Also referred to as “recovery.” Pulmonary: Having to do with, or referring to, the lungs. Recipient: A person who receives a transplant. Recovery: The surgical procedure of removing an organ or tissue from a donor. Rejection: A phenomenon that occurs when a recipient’s immune system attacks a transplanted organ, tissue or cell. Immunosuppressive drugs help prevent or treat rejection. Renal: Having to do with, or referring to, the kidneys. RequiredRequest: A reference to all hospitals’ legal obligations under federal law governing donation. Under this law, hospitals must tell the families of suitable donors that their loved one’s organs and tissue can be used for transplant. The law was enacted to increase the number of donated organs and tissue for transplantation by giving more people the opportunity to donate. Re-transplantation: Due to rejection or failure of a transplanted organ, some patients receive another transplant. Status: An indication of the degree of medical urgency for patients awaiting heart or liver transplants. Examples: status 1A, status 1B or status 2. Steroids: Naturally occurring hormones in the body that help control important body functions. Synthetic or man-made steroids can be used to suppress the immune system. SurvivalRates: Survival rates indicate the percentage of patients that are alive and the grafts (organs) that are still functioning after a certain amount of time. Survival rates are used in developing policy for the Organ Procurement and Transplantation Network. Tissue: An organization of a great many similar cells that perform a special function. Examples of tissue that can be transplanted are blood, bones, bone marrow, corneas, heart valves, ligaments, saphenous veins and tendons. TissueTyping: A blood test that helps evaluate how closely the tissue of a donor matches that of a recipient.

donation_101.indd 22 1/15/2013 11:21:16 AM

23

Donation 101

UniformDeterminationofDeathAct(UDDA): The 1981 Uniform Determination of Death Act is a model statute defining “brain death.” Versions of this Act have been adopted in 39 states and the District of Columbia. The act states that an individual who has sustained either (a) irreversible cessation of circulatory or respiratory functions or (b) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards. Vascular: Referring to blood vessels and circulation. Ventilator: A machine that “breathes” for a patient when the patient is unable to breathe properly on his or her own. Virus:A group of tiny organisms capable of growing and copying themselves while living within cells of the body. Xenograft: An organ or tissue procured from a different species for transplantation into a human.

donation_101.indd 23 1/15/2013 11:21:16 AM

Talking Points


TALK

ING

POIN

TS

1

Overview Language plays an important role in the misconceptions and fears about organ and tissue donation. Avoiding terminology that causes concern among families and the general public not only helps further their understanding, but also improves acceptance of the donation process.

TerminologyMany terms may be confusing to the general public. As an Advocate for Hope for Gift of Hope, it is very important that you communicate the correct terms and ideas to the public:

• Example1: The words “harvest” and “cadaveric donor” are outdated and considered insensitive to donors and their family members. We prefer to use the terms “recover organs” or “procure organs” and “deceased donor.”

• Example2: A deceased donor remains on a ventilator to maintain organ function until the recovery can take place. It is incorrect to say that the deceased donor is on “life support.” This gives the false impression that the donor is being kept alive. Preferred and accurate terms are “ventilator” or “mechanical support.”

Talking Points

Appropriate and Inappropriate Terms

Appropriate Terms• Recoverorgans• Recoveryoforgans• Donationaftercirculatorydeath• Mechanicalorventilatorsupport• Donatedorgansandtissue• Deceaseddonation• Deceaseddonor

Inappropriate Terms• Harvestorgans• Harvestingoforgans• Non-heartbeatingdonation• Lifesupport• Bodyparts• Cadavericdonation• Cadaver(indonationcontext)

It is important to give the public accurate information that conveys a positive image of the donation process.

talking_points.indd 1 1/15/2013 10:29:49 AM

Talking Points

2

First ImpressionsYourbodylanguage,toneofvoiceandwordsallcommunicatesomethingaboutyouoryourmessage.

Unfortunately, people always are ready to make judgments about others. It will take seven seconds or less to make your first impression. Here are some basic suggestions to create a GREAT first impression:

• Approach people with a pleasant smile. • Have a firm business handshake — a full clasp with a little pressure.• Arrive promptly for scheduled events.

Key Message PointsPleaseincludeinformationaboutallofthefollowinginpresentationsandwhileworkingatdisplays:

• The need for donors• The benefits of donation and transplantation• Organs and tissue that can be donated• Who can be a donor• Some facts about donation• CALL TO ACTION:

- Learn the facts - Make a decision - Register your decision (driver services facility, bureau of motor vehicles, online, registration form) - Share your decision with your family


Talking Points

3

What Should Advocates Say?Just like the first impression you make when someone sees you, the first words you speak also leave listeners with a first impression. Therefore, it is important to communicate our work clearly and considerately. Once you have said, “Gift of Hope Organ & Tissue Donor Network,” you already have said a mouthful. So, what and how do we say what we do? Keep in mind that what works for you may not work for everyone and vice versa. The following are suggestions depending on your audience. These responses are intended for short conversation, not for introductions for presentations.

WhenyoumeetsomeoneneworifsomeoneisunfamiliarwithGiftofHopeortheIllinoisEye-Bank,say...

• “I Advocate to save lives! I help people understand more about organ, tissue and eye donation. (Include your personal info) I have a second chance at life because of my ________ transplant. If someone did not choose to be an organ donor, I would not be alive today. I want to help others understand why the need for donation is so great.” or

• “I Advocate to save lives! I help people understand more about organ, tissue and eye donation. When our _________ died, he/she was a donor. It gave us great comfort in knowing that he/she helped save others. We hope others will understand more about donation and make a personal choice to be a donor.”

You can go on to tell them more as they ask questions. Then you may have a chance to add Gift of Hope’s name and explain more specifically about your relationship with Gift of Hope. It is more important for the listener to understand that donation is important rather than hearing Gift of Hope’s name. If they are familiar with or friendly to the topic of donation, your approach may be different.

Whenthelistenerisfriendlytothedonationtopic,say...

• “When our _________ died, he/she was a donor. It gave us great comfort in knowing that he/she helped save others.” or

• “I have a second chance at life because of my ________ transplant. If someone did not choose to be an organ donor, I would not be alive today. I helped save more than _____ lives in Illinois last year as we talked to more people about organ, tissue and eye donation. My work with Gift of Hope is really making a difference in Illinois.”

Whenthelistenerdisagreeswithorhasnotmadeapersonalchoiceaboutthetopicofdonation,say...

• “When our _________ died, he/she was a donor. It gave us great comfort in knowing that he/she helped save others.” or

• “I have a second chance at life because of my ________ transplant. If someone did not choose to be an organ donor, I would not be alive today. Last year in Illinois, more than ____ lives were saved through organ donation. Many people have made a personal choice to become organ, eye and tissue donors. I would be glad to answer any questions you have.”


4

Talking Points

Talking to Children about Organ, Eye and Tissue DonationTalkaboutwhatitmeanstodonatesomething:

• To donate means to give away something we don’t need or something we can get along without.• We donate things to help other people.• Some things we can donate include clothes, food, money and time.• We also can donate parts of our body to help other people.

Talkaboutwhatorgansare:

• Organs are special parts inside our body.• Some examples of organs are the heart, lungs, liver, kidneys, pancreas and intestine.• Each organ has a very important job to do to keep us healthy and strong.

Talkaboutwhathappenswhensomeonehasanorganinhisorherbodythatisn’tworkingright:

• They get very sick.• Doctors and nurses try to help the sick person and make their organ work right again.• Sometimes the only way to help the sick person is to give them a donated organ to take the place

of the one that isn’t working right.

Talkaboutwheredonatedorganscomefrom:

• Donated organs usually come from the body of a person who has just died. The person who died doesn’t need their organs anymore, so the person or his or her family donates the organs to help other people who are sick.

• A living person who wants to help someone can donate certain organs (a kidney or part of a liver or lung). The person who gave the organ will be fine without it, and the donated organ helps the sick person feel better.

Talkaboutwhatanorgantransplantis:

• To transplant something means to move something from one place to another.• An organ transplant is the special operation doctors do to move a donated organ from one person’s

body to another person’s body.

Talkabouttheshortageofdonatedorgans:

• There aren’t enough donated organs to help all the people who need transplants. The sick people must put their names on a list and wait for a donated organ.

• The waiting list for organ transplants is very long. Sometimes the sick people get even sicker because they wait a long time for a donated organ.

• Because there aren’t enough donated organs, it’s important to make sure more people learn about organ donation.


5

Talking Points

Talkaboutothertypesofdonationsthatareneeded:

• Other parts of our body can be donated to help others, too.• While we’re alive, we can donate blood (for people who are hurt or need an operation) and

bone marrow (for people with cancer).• After we die, we can donate tissue like skin (for burn patients), corneas (for blind people) and

bone (for people with broken bones and cancer).

Talkaboutsharingyourdonationdecision:

• You need to think about whether organ, tissue and eye donation is something you would like to do someday to help other people.

• Then you should talk to your parents and find out what they think about donation.• Remember there is no “right” or “wrong” answer. Donating organs and tissue is just one of many

ways we can choose to help other people.• The important thing is for families to talk about it and share their decisions with each other.

**Thewordsunderlinedmayneedadditionalexplanationsdependingontheageofthechildren.**


Additional Resources


AD

DIT

ION

AL

RESO

UR

CES

volunteer handbook

Documents

organ transplant recipients

tissue transplant recipients

tissue donors

hopesaving lives

hope volunteer program

gift of hope service

transplant candidates

transplant programs