Saturday, June 15, 2013


Pathways through which people may become organ and tissue donors can be confusing. Pathways to consent for donation (for yourself) while still alive thereby authorizing action upon your own wishes should no longer be confusing.

A live donor may give a kidney, partial liver, partial lung, partial intestine, or partial pancreas.

A deceased donor may give one or both lungs, a heart, a liver (or 2 pieces of a liver for 2 different recipients), a pancreas, a small intestine, two kidneys, a face, two hands, tissue for up to 50 different recipients.

Organs will not be recovered (procured) for donation unless death has been declared by a physician who has no connection to the organ donation team.

Death may be legally declared on the basis of two different criteria. In the first pathway to organ donation, brain death has occurred and has been formally declared. Very specific criteria must be met including: a body temperature of  >96.8 degrees, exclusion of drug intoxication or poisoning, absence of spontaneous breathing, absence of movement or responsiveness (except for reflexes), absence of brainstem activity.

Not all individuals with severe neurologic injury will end up with death of the brain. Today, many of us have advised our families or healthcare proxies that we would not like to be maintained in vegetative or moribund states. Families are legally and socially supported in decisions to withdraw supportive care in these circumstances. Following such a decision, a family may be approached about organ donation with the following question: "If your loved one dies within one hour of the withdrawal of support (for example, after the breathing tube has been removed) and a physician who is separate from the organ donation team declares that death has occurred because circulation has stopped, can the organs be rapidly removed for the purpose of organ donation? This is donation after circulatory death (DCD).

When support has been withdrawn from a person with consent for DCD but death does not happen within 60 minutes, organ donation does not occur. The individual will still be expected to die but the focus remains comfort care. No organ recovery takes place because death has not occurred within the timeframe necessary for the organs to remain transplantable.

Brain death is not a natural state. Since a brain dead person does not breathe spontaneously, the heart and other organs (except for the brain whose cells are dead) are kept functional because the person is kept on a ventilator that artificially delivers oxygen into the lungs. However, this is NOT life support because the human being has already died. Thus, 2 references to "life support" in USA TODAY's 6/15/13 should have been edited. They can still be amended.

The pathway to consenting for organ donation is no longer ambiguous. Each state has its own donor registry. Enrollment now represents legal consent for donation and removes a potentially difficult decision from being your family's responsibility in the case of your death (at a very difficult and vulnerable time). If you really want to be a donor, please take this step. Only 45% of eligible donors in this country have done so thus far even though 90% of people say they believe organ donation is the right thing to do. Let's do better.

Wednesday, June 12, 2013


If an ABCnews report is accurate, Sarah, the young protagonist  in the lung allocation controversy is about to have her chance. Apparently, someone has died and given the gift of life with the lungs being allocated to Sarah.

This no time for politics. Best wishes to Sarah and her surgical team. Deep gratitude to the donor and his/her family. Their generosity cannot be described in words.


Challenged by the public, the legal system, and by recognition of the validity of concerns about possible unfairness to pediatric patients in need of lung transplants, the transplant community has responded rapidly. On Monday, June 10, 2013 the 16 member Executive Committee (and invited guests) of the  United Network for Organ Sharing/ Organ Procurement and Transplantation Network (OPTN) convened a meeting by conference call to review data, policies, and input from various sources pertaining to the allocation of organs for lung candidates age 11 or younger. The meeting agenda included:
  • Statement from the American Society of Transplant Surgeons + American Society of Transplantation
  • Letter from the House of Representatives' Doctors' Caucus
  • Letter from Senator Robert Casey 
  • Statement from Stephen Harvey, Esquire (attorney for the family of a critically ill pediatric lung candidate) 
  • Comments from 3 other Committees (Ethics, Thoracic and Pediatrics) 
  • Correspondence with Secretary Sebelius of HHS
  • UNOS data about lung transplantation
  • Current lung allocation policy
The outcome was a unanimous vote to effect an immediate change to policy  Policy (Lung Candidates with Exceptional Cases) to permit transplant centers to request prospective review and additional listing (for adult lungs) of pediatric cases age 11 or younger from the Lung Review Board. This policy change will expire on July 1, 2014 pending reconsideration by the entire UNOS/OPTN Board of Directors and additional study and recommendations of the Policy from relevant Committees.

This is an example of the system and the transplant community at its finest. A data driven, comprehensive review with input from all stakeholders. Transparency in the processes defined and executed as outlined, and fully shared with the public (follow the links above). Making the best possible judgement while simultaneously acknowledging the tragedies to befall those receiving the short ends of allocation straws.

But, it would be so wrong to celebrate a process when the lives of dying patients are at stake. This system does not serve them all. It cannot unless we become more successful in addressing the organ shortage. Register now to be an organ and tissue donor. Become an effective ambassador for this cause and these patients. Join our team.

Monday, June 10, 2013


Desperate transplant candidates and families caught in the vast organ shortage in the U.S. should not be criticized for turning over every rock in search of a life-saving organ. But they can not all be winners who receive an organ within the allocation system. The discrepancy between supply and demand is simply too great. (register now to donate) This system of distribution has been devised over years, by multi-disciplinary teams of highly knowledgeable stakeholders (including patients and families) through transparent and democratic processes (Organ Procurement and Transplantation Network Policies). It is imperfect but iterative. Improvements are made. When a gap is identified within this incredibly complex set of policies, a process is followed to fix it. When an unfairness is perceived, a similar process of debate is initiated. Action - or not - is taken. Unilateral decisions that effect multiple patients are not made by individuals, any of whom has an intrinsic bias of one sort or another.

A recent bypass of this set of checks and balances was created when a Federal judge temporarily ordered the Secretary of Health and Human Services to alter the allocation scheme for an individual patient's benefit (temporary restraining order).  This precedent has already generated legal action from at least one other patient seeking similar protection. One can only imagine the potential legal responses from the candidates who may be disadvantaged as a result of the relative advantage afforded to the original plaintiff/claimant. After all, this is a zero sum circumstance in which one patient's benefit comes only at another patient's loss.

Similar uninformed meddling in the transplant field on behalf of a patient came from a Mississipi judge who granted parole to one female prisoner with kidney failure on the condition that her similarly paroled sister donate a kidney to her. Unfortunately, neither had been accepted by a transplant program and both were declined because of obesity.

Legal intrusion into medical arenas as complex as the area of pre-transplant organ allocation +/or transplantation is not likely to facilitate better regulations, more transplants or a fairer system. The only actions that can effectively do so are successful efforts to diminish the organ shortage by individuals who register to donate and organizations that make broad efforts to support donation.

Caution is warranted to avoid generating chaos similar to a crowd surging to find a space on a lifeboat. While all involved are undoubtedly well intentioned, it may be most appropriate to consult knowledgeable persons in the transplant field prior to taking actions that may have far reaching consequences.