1. Collaborating for Life: The Organ and Tissue Donation Process
Introduction: It’s a pleasure to talk with you today. My name is_____________________ and I’m here to share the organ and tissue donation process with you.
Audience check: Who’s in the audience? Where do/will each of you work? Who has experience with the organ or tissue donation process?
Framing: I’d like to be as informal as possible, so as I go along, please feel free to interrupt or let me know if you have anything to add for the benefit of the group’s learning, given the experience you may have had with the donation process.
Goals: Today I’ll talk with you about Gift of Life Donor Program (GLDP) and our services, the need for transplantable organs and tissues, some donor shortage solutions, and then we’ll walk through how the organ donation process works.
Objectives: At the end of this course you will be able to:
Determine the appropriate timing and phone number to be used for making organ and tissue donor referrals.
Describe the clinical exam, apnea testing and confirmatory tests for identifying brain death.
Describe the optimal family approach process, incorporating three important factors that influence authorization.
Again, please feel free to ask questions and offer insight into your experience to help all of us learn together.

2. Gift of Life Donor Program Philadelphia, Pennsylvania USA
Non-Profit OPO/Tissue Recovery/Eye Bank
Established in 1974
Largest OPO in the United States
Federally designated OPO (by Medicare) for eastern PA, Southern NJ & Delaware Acute Care Hospitals
Transplant Centers, 42 Programs
Million Population
483 organ donors in 2015, resulting in 1,291 transplants; highest volume in the U.S. – donors/MM; 1,202 bone recoveries; 2,265 cornea recoveries and 2,546 tissue recoveries
Over 40,000 organs for transplantation and over 550,000 tissue allografts
Accredited by: Association of Organ Procurement Organizations (AOPO); American Assoc. of Tissue Banks (AATB) & Eye Bank Assoc. of America (EBAA); UNOS/OPTN member OPO
Let me tell you about Gift of Life.
For those of you who are new or unfamiliar with us, you may be surprised to learn that Gift of Life was one of the first Organ Procurement Organizations in the United States and is the largest OPO in the US.
We serve as a link between acute care hospitals, transplant centers, families facing end of life decisions and people awaiting transplants.
With 22 people a day dying while waiting for a life-saving organ transplant, we are proud to have coordinated over 40,000 organs for transplantation since our start in 1974.

3. Gift of Life Donor Program Primary Services
24 hour on-call assistance and on site response to evaluate and manage potential organ donors
Lead organ and tissue donation conversations with families and coordinate the informed authorization process
Coordinate surgical recovery of organs and tissues and allocate organs per UNOS guidelines
Provide comprehensive bereavement aftercare program for all donor families
Assist with the development of policies and procedures
Provide professional and public education
And how are we accomplishing this goal?
Our work starts when a member of the health care team contacts us with a referral and we arrive to evaluate the family’s opportunity for donation.
In addition, our aim is to closely collaborate with the care team to develop a family communication and clinical plan that incorporates donation.
However, this is only the beginning of our work with families.
Gift of Life offers an extensive after care program to support families through the stages of grief and sponsors activities, such as donor recognition ceremonies, to help these families appreciate what a precious gift they have helped their loved one give.

4. Gift of Life Donor Program Organ Donor Experience 1994 – 2015
NUMBER OF DONORS
You can see that since our first Donation after Cardiac Death case in 1995, the number of DCD’s has progressively increased.
Our success with DCD is a reflection of several factors:
Because of an increased public awareness of futility of life-sustaining treatment for dying patients, families are more inclined to withdraw support when they know that death is imminent.
Because of the hospitals’ timeliness of organ referrals, we been given us increased opportunities to be on site early to evaluate these patients for DCD.
DCD provides another important opportunity for donors and their families to give the gift of life, and it increases opportunities to provide life-saving organ transplants for those on the wait list.
YEAR
Source: Based on Gift of Life Donor Program data through December 31, 2015.

5. 5,717 Total Waiting In Our Region
Organ Transplant
Waiting Lists
-Candidates -
May 2016*
120,774 Total Waiting in U.S.
Regional Waiting List
4, Kidney
Liver
Lung
Heart
Kidney - Pancreas
Pancreas
Heart – Lung
Intestine
5,717 Total Waiting In Our Region
The challenge we face is that there are just not enough organs.
There are over 120,000 patients on the national waiting list and nearly 6,000 are from our region alone.
The support you provide the potential donor’s families in the ICU helps them and also provides hope to the patients/families that are waiting for the gift of life.
Facilitator’s Note: This waiting list reflects the actual number of patients or candidates waiting for organ transplants, according to data from UNOS. A patient who is waiting at more than one center, or for multiple organs, would be counted as only one candidate. The list above does not reflect the number of registrations since, according to UNOS, one patient who is waiting at more than one center, or for multiple organs, will have multiple registrations. Contact Andrea Reynolds, ext 1229 for most recent wait list data
Source: Based on OPTN data as of June 3, with data available through May 27, Count based upon candidates.
Candidates - A patient who is waiting at more than one center, or for multiple organs, is counted as only one candidate.
Totals may be less than the sums due to patients included in multiple categories.

6. National Median Time (In Days) to Transplant How long is the wait?
This median waiting time is for the registrations that were added to the waitlist. Note: for Kidney waiting time-2002 is the most recent year for which median times to transplant may be calculated because less than half of the registrations have been transplanted. For all other organs, the data is from 2007.
Waiting Times information from UNOS:
Waiting times vary widely for many reasons. The shortage of organs causes most patients to wait for a transplant. The amount of time a patient waits does not show how well a transplant center or OPO is doing its job. Each patient's situation is different. Some patients are more ill than others when they are put on the transplant waiting list. Some patients get sick more quickly than other patients, or respond differently to treatments. Patients may have medical conditions that make it harder to find a good match for them.
How long a patient waits depends on many factors. These can include:
blood type (some are rarer than others)
tissue type
height and weight of transplant candidate
size of donated organ
medical urgency
time on the waiting list
the distance between the donor's hospital and the potential donor organ
how many donors there are in the local area over a period of time and
the transplant center's criteria for accepting organ offers
Depending on the kind of organ needed, some factors are more important than others.
Based on OPTN data as of January 8, Based on OPTN registrations listed in 2007. 6

7. Gift of Life Donor Program Donor Shortage Solutions
Public Education / Donor Registries
Legislative Initiatives
Hospital Partnerships
Expanded Donor Criteria
No upper age limit
Co-morbid factors (History of IDDM, hypertension, prolonged hypoperfusion)
Positive serologies (Hep B Core, Hep C)
Donation after Cardiac Death (DCD)
What can be done to increase the number of lives saved through transplantation?
There are multiple avenues for addressing the organ shortage.
It’s important for the public and our professional partners to know that there is no upper age limit for potential organ donors, and most co-morbidities are not automatic rule outs.
Although certain conditions may be grouped under expanded donor criteria, transplant surgeons are successfully matching these organs to recipients who otherwise would not have a second chance at life.
Facilitator’s Note on images: Top Image (U.S. Department of Health and Human Services Secretary, Tommy Thompson); middle (Public Service Announcement); bottom (elderly couple to represent ECD donors / no upper age limit)

8. Myths & Misconceptions
I’m too old/sick to donate
Only the wealthy receive transplants
Physicians and nurses won’t save me
Donation will disfigure my body
I won’t be able to have an open casket funeral
My family will have to pay for donation
My religion doesn’t support donation
Some of the reasons that prevent people from donating organs and tissue are unfortunately, based on myths and misconceptions.
Facilitator: Give examples on slide, stating myth followed by fact.

9. Drivers’ License Registries
Delaware
All 50 states have donor registries via the driver’s license.
In PA, NJ and DE, the driver’s license is a legal gift document.
It shows that the individual made their wishes known regarding organ and tissue donation.

10. Gift of Life Triage for Patient Deaths
Cardio-Respiratory Death
Loss of cardiac function
Loss of respiratory function
Non-Recoverable Brain Injury/Illness
(Ventilator Dependent)
Irreversible loss of all brain stem &
brain stem function in absence of
metabolic or pharmacologic inhibitors or
Family is discussing withdrawal of life-sustaining measures
How does the routine referral process work?
At Gift of Life, we receive approximately 48,000 referrals annually.
The majority of the calls we receive meet the criteria on the left where patients are pronounced dead based on cardiopulmonary cessation. Upon receiving the call we’ll begin our screening & evaluation for potential tissue donation.
The right side shows the parameters needed for a person to be considered as an organ and tissue donor.
It is important for us to receive these referrals as early as possible because only 1-2% of all deaths (those patients who are ventilator-dependent with non-survivable neuro injuries or illnesses) have the potential to become organ donors.
The opportunity for organ donation is rare and precious.
Since one donor can offer up to eight life saving organs for transplantation, even one missed opportunity has significant impact on those waiting.
Potential Tissue Donor
Potential Organ & Tissue Donor
Corneas, Heart Valves, Skin,
Long Bones, Saphenous Veins
Heart, Lungs, Liver, Pancreas, Intestine, Kidneys & Tissues
Call KIDNEY-1

11. Regardless of the donation pathway (donation after brain death or donation after cardiac death), it’s important for you to refer patients who fit this criteria as soon as possible.
The criteria for a timely referral is at “the first indication of a non-survivable neurological injury or illness, or anoxic event, in the mechanically ventilated patient.”
This will give us the time we need to come to the hospital, take a discreet position on the unit, and review the patient’s chart to determine the medical suitability for organ donation.
Once medical suitability has been determined, we may leave the unit and follow the case by phone.
Only under certain circumstances do we ask to speak with families about donation opportunities. We’ll talk about these details later in the presentation.
Facilitator: Questions to generate discussion may include:
What does a non-survivable “neuro injury” look like clinically?
Why is it important to call Gift of Life so early in the patient’s clinical course?
What obstacles do you perceive staff may have to notifying Gift of Life? How did you handle them? What ideas do you have for handling them?
What experiences can you share regarding the timing of the referral (late or early)?

12. Six Scenarios That Trigger A Donation Discussion
Family Understands Death / Non-Survivable Nature of Injury (Prior to Formal BD Pronouncement or Withdrawal Meeting)
Brain Death Pronounced; Explained to the Family / Family understands
Pulmonary or
Hemodynamic Instability
(On the Verge of Coding)
Patient and Family
Family Brings Up Donation
Slide is ANIMATED
There are 6 separate times that it’s important for us to partner with you to have a conversation with families about donation opportunities:
Empirical data tells us that families are more likely to say yes to donation if they hear about their loved one’s death, have some time to understand and absorb the loss and then, are approached about donation opportunities in a separate conversation.
However, some families understand the grave prognosis more readily, and actually bring up donation on their own.
Today, with up to 90% of all deaths in the ICU occurring after a decision to decelerate or withdraw life sustaining therapy, it may be necessary for us to have a conversation with families at this time, since they may not be aware that their decision to decelerate treatment will impact their loved one’s ability to donate.
There are times when patients get so unstable that we may decide to speak with families before or even during a code situation. This is an important time to offer donation opportunities, since again, their ability to donate may be lost if we don’t discuss donation options at this time.
Even though it’s not congruent with best practice, there are times when someone from the hospital staff my inadvertently bring up donation to families in our absence. This is also a time we would want to speak with families to clarify the process for them and to make sure all of their questions are answered.
There are also times that the family will understand that the patient has died and/or that there is no hope for patient’s meaningful survival (can occur prior to formal brain death pronouncement or prior to final withdrawal meeting).
Decision To Limit, Decelerate or W/D Treatment
Donation Mentioned Independent of
Gift of Life

13. Factors Affecting Organ Donation Authorization Rates
When setting appropriate*
67%
When setting not appropriate
45%
p < .0001
When request decoupled**
72%
When request not decoupled
53%
p < .0001
OPO & hospital staff request
72%
OPO coordinator request
62%
This landmark study is part of the foundation of our evidenced based practice. It shows 3 factors that have a profound profound impact on the rate of authorization for donation.
The first is the impact of family discussions in a private location.
The top graph shows that when the setting is appropriate- defined as a quiet place away from the patient’s bedside- 67% of the families authorized donation.
The second factor involved the timing of those discussions, which is referred to in the study as decoupling
72% of families authorized donation when a temporal separation occurred between the family conversation about their loved one’s death, and the first mention of donation.
The remaining factor pertains to who should have those discussions with families.
When someone from the hospital care team and the transplant coordinator approach the family together (collaborative approach), there was an significant difference in the outcome compared to either one approaching the family alone.
Lastly, the researchers found that when all three of these factors were present, donation authorization rates rose to 74%.
53%
Hospital staff request
p < .0001
* Appropriate setting - a private family consultation room
** Decoupled request - a temporal separation between discussion of death and first mention of donation
Source: “Improving the Request Process to Increase Family Consent for Organ Donation”;
Gortmaker, et.al. (Journal of Transplant Coordination 1998; 8: )

14. What You Can Do to Make a Difference
Timely patient referral to Gift of Life on all vent dependent patients with a non-survivable neurological injury/illness
Gift of Life coordinator to hospital for evaluation for donation
Ensure that families are well-supported and receiving frequent updates regarding their loved one’s condition
Appropriately timed, sensitive family approach – decoupling; no early mention of donation to family
Collaborative family approach with hospital staff and Gift of Life coordinator
Ongoing donor management and family care
Source: The Partnership for Organ Donation
In summary, imagine how many lives that could be saved if these best practices are incorporated into routine ICU patient and family care.
The timing of your referral is critical: “at the first indication that a vent-dependent patient has sustained a non-survivable neurological injury or illness.”
This allows us the time to perform an on-site evaluation to determine if donation is an option for the family.
It’s important to give families the information and time to absorb the gravity of their loved one’s condition.
We ask you to refrain from mentioning organ donation until the conversation can be decoupled and conducted collaboratively.
The end goal is to provide a positive experience for families, even in the face of their grief, and to ultimately save lives through organ donation and transplantation.