“If you are not an organ donor when you die, you are taking a lot of people with you.”

I am continually and pleasantly surprised by connections that are made via the amazing online world.  Dr. Chris Barry, who is a transplant surgeon and researcher at the University of Rochester Medical Center, found my blog resource page with videos regarding organ donation.  As a result, I learned of a TEDx talk he gave about the obstacles that prevent our society from realizing its true potential to help others through organ donation.

I liked several things in his talk including nice infographics and new phrases to encourage registration.  We don’t have to be so serious – “go green and recycle your organs!”  I also like the honesty with which he addresses the tough stuff (the “ick” factor, organ allocation system) and his passionate call for action.  He makes excellent points about different ways to approach organ donation conversations such as a natural part of end-of-life planning. Most of all, I agree with him that organ donation is “a profoundly spiritual act that honors the sanctity of life.”

I reached out to Dr. Barry to ask for his opinions on some organ donation issues. He graciously agreed to write a guest blog.  Here are his responses to my questions.  Thank you Chris!

~~GUEST BLOG BY DR. CHRIS BARRY~~

Wendy J. Manuel recently asked my opinion on three important aspects of organ donation that were not covered in my TEDx talk (had to keep it within 15 minutes!).

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The first is the fact that less than 3% of people who die in the hospital are medically eligible to be organ donors, so most registered donors will never be in a position to give their gifts. The vast majority of hospital deaths either happen suddenly (such as with a heart attack or massive trauma) or in the setting of active and overwhelming infections or malignancies. There are only two scenarios when death yields a suitable organ donor: brain death and donation upon cessation of cardiac function.

Brain death means that the brain no longer functions to support life without mechanical (i.e., machine ventilation of the lungs) and pharmacologic (medicines to maintain heart function and circulation) support. There is no longer blood flow to the brain and there is no effective electrical activity in the brain to support life. This usually occurs upon a massive stroke, either bleeding into the brain from a ruptured vessel or a large blood clot to the brain cutting off the critical supply of oxygen, but can also happen in the context of suffocation or drowning. In this case, oxygen to the remaining vital organs can be artificially maintained with mechanical ventilation and blood pressure and heart rate instability can be controlled with medicines. So the heart is still beating, but the patient is dead (more on this below).

Donation after controlled circulatory collapse (also referred to as donation after cardiac death or “DCD”) is a situation in which the patient is not yet brain dead but is not expected to survive withdraw of mechanical and/or pharmacologic support (usually due to a massive head injury). In this case, special consent is obtained from the family to remove the breathing tube and stop the blood pressure medicines and wait for the patient’s heart to stop beating. This is confirmed by a physician who is independent from the transplant team and then the transplant surgeons are called in immediately to perform the organ recovery operation. Time is of the essence in this situation because if the organs are without their blood supply for too long, then they are not suitable for transplantation.

All potential donors have to be free of active infections or cancers, have normal vital signs (blood pressure, heart rate, temperature, blood oxygen levels), and have not been exposed to any prolonged periods in which oxygen levels were too low or the heart had previously stopped beating for a prolonged period of time. So that happens around 3% of the time in the hospital setting. Indeed, most deaths happen outside of the hospital, so it is even less likely that your registering to become a donor will actually result in you actually becoming a donor.

Now, don’t you dare say “so why bother registering?”!  I see two perspectives to consider. The most obvious one is that if no one registered, then only transplants from living donors would be performed. That would mean that 60% fewer kidney transplants, 80-90% fewer liver transplants, virtually no lung or pancreas transplants, and no heart transplants would be performed. The other, more subtle yet perhaps more profound, is the spiritual and humanistic perspective. Imagine a world where people did not care about bestowing life to others after they have passed.

[Wendy’s comment – see “Sacrificial Giving]

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Wendy’s second question was about brain death. Brain death is a medical diagnosis that has been legally and ethically accepted in this country since the early 1970s. It is the complete and irreversible cessation of brain function that allows sentient existence and sustains life. Artificial life support can maintain circulation and oxygen flow to vital organs other than the brain, but the brain itself is dead and therefore the patient is declared dead. This is different from a persistent vegetative state and is determined by a physician who is completely distinct from the organ transplant team. Physical exam and transiently stopping ventilator support to confirm complete absence of respiratory drive can make the diagnosis, but if there is any doubt, more sophisticated tests such as EEG or cerebral blood flow tests are employed.

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Wendy’s third question was how often is a registered organ donor’s consent denied or revoked by family members or loved ones? This is a rare occurrence and its frequency depends on whether the donor’s intent or consent was registered. In the past, all organ donor registries were registries of intent. The donor’s signature registered his or her intent to be a donor. The family would then be approached by the organ procurement organization (OPO) representatives (not the physicians taking care of the patient or the transplant surgeons) to request consent. In this case, it is possible for the family to deny consent regardless of the donor’s stated wishes. This can happen if the donor never discussed his or her decision with family members beforehand.

Registries of consent are becoming increasingly common, although they are not universal (some states still employ registries of intent). When one registers consent to be an organ donor, this is a legally binding document and the family cannot overturn this decision. In very rare cases, families can be so distraught and adamantly against donation that OPOs may not enforce first person donor consents. Since different OPOs maintain either registries of intent or consent and the possibility exists that even donor consents may not be uniformly enforced, it is imperative that everyone who registers to be an organ donor discusses this decision with their family beforehand. In addition, having this decision documented by an estate planner when living wills, health care proxies, and advanced directive documents are drafted will further increase the likelihood that a donor’s wishes are honored.

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