Three Phoenix-based news outlets published reports the evening of Wednesday, Sept. 26, 2019, about a local donation case. The family of a 26-year-old man did not agree with a hospital’s brain death declaration from Sept. 15, 2019. They believed he was still alive. The reports, as well as public record, show the family sued Donor Network of Arizona (DNA) and the hospital to prevent organ donation from proceeding. DNA’s counterclaim asked the court to honor the donation decision and allow DNA to recover organs consistent with his choice, to save the lives of potentially five organ waiting list candidates.

The DNA team understands this recent media coverage and public support for the family comes from a place of genuine concern. It’s a concern with which we deeply connect. While DNA remains bound by federal regulations and confidentiality policies, we would like to clarify some details that are available in public records.

According to public records, the man at the center of this matter registered to be an organ and tissue donor three times. He indicated his wish to be a donor on two separate ADOT MVD driver’s license applications—in 2015 and 2018. A third, out-of-state registration was also confirmed for the man in Colorado in 2016.

Also according to public record, a physician declared the man brain dead Sept. 15, 2019. Following this declaration and subsequent review, a death certificate was issued by a county medical examiner. By stipulation made by the family in open court, the hospital performed additional brain death tests. The results confirmed the original diagnosis, and the Honorable Judge Theodore Campagnolo dismissed the case, allowing for organ recovery to continue, which was the man’s decision.

Brain death is death—not to be confused with a coma. Organ donation is only possible after the donor passes away. Individuals, who are in “persistent vegetative states,” or comas, are not candidates for organ donation because these patients are not deceased. The doctors who examined the man all agreed that he had passed away, a decision confirmed by the medical examiner. 

DNA’s commitment to Arizonans is to be constantly vigilant about the integrity of our work in donation. We work around the clock throughout the year with thousands of families at a difficult time in their lives to provide a tremendous gift to someone who is waiting for a new or renewed life. We take very seriously our responsibility to donors, their families and transplant recipients as well as our future ability to both save and improve lives. This responsibility continues to be the basis for our policies, protocols and practices.

Arizonans with questions regarding their registration status, or about donation in general, can contact DNA anytime at registry@dnaz.org.

WHY DOES THE DONATELIFEAZ REGISTRY SUPERSEDE A FAMILY’S OBJECTION TO DONATION?

An individual has the right to make end-of-life decisions for themselves, and organ and tissue donation is no different. A person has the right to choose whether to be a donor and the right to choose not to be a donor. Once that choice has been made, the law requires that this choice be honored.

Ultimately, it is DNA’s responsibility and statutory obligation to follow through on a donor’s decision to share the gift of life following declaration of death. The Uniform Anatomical Gift Act (UAGA) defines a person’s registry status as a legally-binding decision at their time of death. It cannot be revoked or changed by anyone other than the registrant, much like other end-of-life decisions, such as a will.

The law is clear and gives a voice to the donor.

It is never DNA’s intent to add burden to families in a moment of loss. DNA’s mission is to honor a donor’s wishes to save and heal lives and to honor them as heroes who change the world through their generosity.

CAN AN ADVANCED DIRECTIVE STOP ORGAN DONATION FROM HAPPENING?

In general, an advanced directive—such as giving a “power of attorney” to a family member or loved one—can include language regarding organ and tissue donation decisions. If it does not, the law provides that a person’s choice to be a donor cannot be changed by a family’s objections.

HOW WOULD I KNOW IF I REGISTERED AS AN ORGAN AND TISSUE DONOR?

If you received a confirmation letter, or if you have the “DONOR ♥” on your state ID, you may be in the DonateLifeAZ Registry. For questions about your registry status in Arizona, or about organ and tissue donation in general, Arizonans may contact DNA anytime at registry@dnaz.org.

WHY DO HOSPITALS CALL DNA ABOUT DONATION?

It is not a hospital’s role to discuss donation, or its process, with legal next-of-kin of a patient. The Centers for Medicare and Medicaid Services (CMS) requires each Arizona hospital to call DNA in the event of any death. Hospital employees do not have access to the DonateLifeAZ Registry; therefore, a referral call prompts DNA to check a patient’s registry status. The timely referral of patients who meet the criteria for donation is essential to the donation process.

WHAT DOES “BRAIN DEATH” MEAN?

According to the American Academy of Neurology brain death is death. It is the irreversible cessation of all brain activity, including the brain and brain stem. Most organ donation occurs after brain death declaration, though in some instances, organ donation can occur following cardiac cessation. Brain death is declared by a hospital physician who, in accordance with accepted medical standards and following the hospital policy, makes the diagnosis of brain death.

The time of the brain death determination is the person’s legal time of death.

A hospital determines brain death. DNA does not determine brain death. The physician who determines brain death cannot be the physician who recovers the donated organs. The doctor declaring death is not involved in any donation process from recovery to transplantation. And, lastly, organ placement is handled by UNOS, a national nonprofit, not a hospital or doctor.

There has never been a documented case of recovery from brain death under circumstances where all confirmatory and clinical tests have been performed accurately.

In the context of an in-hospital death, a brain-dead patient may appear alive because the chest may rise with breath and the heart may continue to beat through artificial support, such as a ventilator and medications. Plus, according to the U.S. Department of Health and Human Services, U.S. Library of Medicine, the following manifestations are occasionally seen in people who have been declared brain-dead and should not be misinterpreted as evidence for brainstem function:

• Spontaneous movements of limbs
• Respiratory-like movements
• Sweating, flushing, excessive heart rate (exceeding 100 beats per minute).
• Normal blood pressure without support or sudden increases in blood pressure
• Deep tendon reflexes, superficial abdominal reflexes, etc.
• Babinski reflex, which is when a big toe moves upward or toward the top surface of the foot and other toes fan out when sole of the foot has been firmly stroked.

WHAT ABOUT LIVING DONATION?

Living donation is outside of DNA’s work and is only possible through an organ transplant center.

WHO REGULATES DNA?

DNA is a highly regulated organization subject to oversight and audits by multiple organizations and programs, including:

• Centers for Medicare and Medicaid Services (CMS)
• The Office of Inspector General (OIG)
• Association of Organ Procurement Organizations (AOPO)
• American Association of Tissue Banks (AATB)
• Eye Bank Association of America (EBAA)
• United Network for Organ Sharing (UNOS)
• Food and Drug Administration (FDA)

Donor Network of Arizona (DNA) fulfills the lifesaving and life-healing mission of organ, eye and tissue donation as the state’s federally designated organ procurement organization. Our work is made possible by the generosity of Arizona donors and their families. As also a tissue recovering agency, eye bank and histocompatibility lab, DNA collaborates with health care and community partners to facilitate the gift of life. DNA is a vital link for transplantation and encourages Arizonans to sign up to be donors.