Dear Health Care Worker,

In April 2003, residents of Arizona will begin participation in Arizona’s first organ and tissue donor registry. The registry is a result of the hard work of a consortium of Arizona non-profit organizations that was formed in late 2001 in order to develop and implement an Arizona Donor Registry. In March 2002, the Arizona legislature voted into law the Arizona Donor Registry and -- in April 2003, this registry will become a reality.

Currently there are almost 1,000 people waiting for an organ transplant in Arizona. Nearly 6% of the patients waiting die every year due to the lack of available donors. Arizona has had one of the lowest donation rates in the country over the past several years. This remains true despite research that continues to show that the American public supports donation.

Most surveys show 85 – 90% of Americans support donation. 93% of individuals have indicated that they would honor their loved one’s wish to be a donor. However, 50% of willing donors have not told their family that they wish to donate. This can result in difficult situations for grieving families who, without any documentation of a person’s wishes, must make a decision for them about donation. This research indicates that we can double the rate of donation if we can increase those who have made a formal commitment. The registry gives Arizonans a way to commit

Since donation was removed from the driver’s license in 1996, Arizonans have had no formal mechanism for indicating their desire to donate. Even when donation was part of the license, there was no central registry to check a person’s wishes if the license was not available. With the Arizona Donor Registry, this will change.

Anyone wishing to be a donor will have the ability to register via several mechanisms, including visiting Donor Network of Arizona’s website and conducting an online registry, registering at events and health fairs where Donor Network of Arizona will have wireless laptops available for registry, visiting computerized kiosk booths at various locations or by filling out a form and mailing it in. This registry will be available through Donor Network of Arizona 24-hours-per day, seven days per week. When hospitals call Donor Network of Arizona with a patient who has died, that patient’s information will be checked against the registry to see if they are registered. If registered, this information will be shared with their next-of-kin and a medical / social history will be conducted. If the patient is medically suitable for donation, the recovery process will begin.

The donor registry will not change follow up provided to the family of a donor. If a family would like to receive follow up information we will send them information on what was recovered and transplanted and will provide ongoing information to them for two years.

The following should answer some of the questions that you have regarding this registry. If you have any additional questions or comments, please feel free to call (602) 222-2200. If you would like to register to become a donor – log onto www.AZDonorRegistry.org.

Sincerely,

Tim Brown
Chief Executive Officer

What does a registry mean?
If a person is on the Arizona Donor Registry, it means they have gone through a process of informed consent via the Internet, a Computerized Kiosk or in written form. A donor registry in the state of Arizona is actually consent to donate.

How do I find out if a patient is registered to be a donor?
Through the existing practice of referring to Donor Network of Arizona all deaths or imminent deaths in your hospital as required by the Conditions of Participation in Medicare. At the time you make the referral call, our triage coordinator will check the registry to see if the patient is a registered donor.

When should I call to find out if the patient is registered?
You will continue to call in every death and imminent death (prior to withdrawal of ventilator support) just as you always have. But, it is more important than ever to call Donor Network of Arizona before speaking to the family about donation. If the deceased is not listed on the registry, then the current approach procedure will not change. However, if he or she was registered, then the case will be handled somewhat differently. Before talking to the family, ask yourself: Is this person on the Registry? Call Donor Network of Arizona first.

What if the patient is a registered donor?
Donor Network of Arizona will collaborate with the hospital designated requester on informing the patient’s medical decision makers that the person was a registered donor. This can include a faxed copy of the registration. No consent will be necessary from this party. A medical and social history will be required to determine final medical suitability to donate. Donor Network of Arizona will collaborate with hospital staff to inform families in a sensitive way, mindful of the stress they are experiencing.

Is this legally binding?
The personal decision to become a donor has always been legally binding per Arizona Revised Statues 36-841. Because donation information is rarely available at the time of a person’s death and due to the fact that most mechanisms for donation do not include all components of informed consent, the responsibility for making the donation decision has traditional fallen to surviving family members or designated medical decision makers. The Arizona Donor Registry will give rapid, secure and confidential access to each registered person’s donor information, making it easy to know that person’s intent. There will be three methods of signature verification available for this process:
     1. Legal signature at time of registration via kiosk or laptop;
     2. Secure on-line registration with check box signature
     3. By mail: When a person registers by mail or by form, the signature will be scanned into the Registry database.

What if the surviving family objects to donation?
Most families will be relieved to know exactly what their loved one wanted. Some families members, reacting to the crisis they are experiencing, may object to donation. The organ or triage coordinator will counsel the family with compassion and empathy, providing documentation from the registry that this was the specific wish of the deceased. In addition the coordinator will explore any concerns that the family may have about donation. On rare occasions, it may be necessary to activate the conflict resolution protocols that hospitals currently use to manage disagreements between families and care providers.

When will the registry become active?
Arizonans will be able to enter the registry on April 1, 2003. Donor Network of Arizona will begin checking registrations on all referrals starting June 1, 2003.

What if the family objects to organ, eye or tissue donation?
Most research indicates that if a family knows the wishes of their loved one, they will support those wishes. In fact, our experience at Donor Network of Arizona is that families are most often relieved to know exactly what their loved one wants. But some family members, reacting to the crisis that they are experiencing, may object to donation. The organ or tissue coordinator will counsel the family with compassion and empathy, providing documentation from the Registry that this was a specific wish of the deceased. On rare occasions, it may be necessary to activate the conflict resolution protocols that hospitals currently use to manage disagreements between families and care providers.

What about confidentiality?
The registry database is secure and restricted to Donor Network of Arizona staff. Hospital staff routinely notifying Donor Network of Arizona of a death or prior to withdrawal of ventilator support will be advised of the patient’s listing on the Registry?

Will children be eligible for the registry?
A person must be at least 18 years of age to register to be a donor. Following current practice and law, parents experiencing the loss of a child 17 and younger will be given the opportunity to donate if the child is medically eligible.

I am a Designated Trained Requester – do I still have a role to play in organ, tissue and eye donation?
Yes – your skills and commitment to donation are highly valued. When a patient is not registered, the current protocols will remain active. Hospital staff will call Donor Network of Arizona to refer the death or imminent death and the appropriate coordinator will work with you to plan the approach to the family. The family of every unregistered patient deserves the opportunity to make a decision about organ, tissue and eye donation.

The consortium who developed the donor registry is made up of the following organizations: Donor Network of Arizona, University of Arizona, Arizona Kidney Foundation, Arizona Hospital and Healthcare Association, Arizona Medical Society, Arizona Nurses Association, American Liver Foundation, Juvenile Diabetes Research Fund, Arizona Coalition for Transplantation.

What if I Have Questions?

Call Donor Network of Arizona
1-800-447-9477 connects you to Donor Network of Arizona 24 hours a day.

Organ and tissue coordinators are always available to answer questions.