Showing posts with label organ donation. Show all posts
Showing posts with label organ donation. Show all posts

Friday, April 4, 2025

Recent Criticism of Organ and Tissue Donation: "NO!," the Transplant System is NOT ‘in Chaos’!


According to a recent article in the New York Times, there are issues within the U.S. organ transplant system about which you should be aware if you are a person awaiting an organ transplant, or an intended recipient (the NYT article is behind a pay wall, but you can access the article for free in the Virgin Islands Daily News by clicking here).  If one could believe the headline, the "
organ transplant system" is  "in chaos."  The headline is clearly exaggerated and untrue.   

Before delving into the specifics of the article, however, these challenges do not regard organ procurement or recovery.  In other words, please do not reconsider a donation!  If anything, the article raises issues that would be resolved by a larger supply of donors and donor organs.  In other words, the criticism does not, and should not, mean that if you are an intended donor, that your gift will not be honored.  
The article focuses on the practices of providing organs to patients on a waitlist.  According to the article, procurement organizations like Lifebanc in Northeast Ohio, and Legacy of Hope in Alabama sometimes provide organs to patients that are not at the top of a waitlist.  The story highlights the plight of Marcus, a man who reportedly was "next in line" for a kidney transplant, but who has been "skipped" multiple times in favor of patients at different hospitals. According to the Times, the practice of directing donations that do not strictly follow the "official waitlist" raises concerns about fairness and transparency in organ allocation, especially since some hospitals appear to benefit more than others.
The broader question raised by the authors is whether the U.S. organ transplant system, controlled by a single national network,  lacks transparency, leading to what some believe are inequities in who receives life-saving organs. Reforms have been proposed to increase accountability and ensure that the "official waitlist" is followed more strictly. Some argue that systemic changes are needed to prevent hospitals from unfairly influencing organ allocation and to ensure that every patient has a fair chance at receiving a transplant.  Of course, the article does not discuss or explore whether deviation from the official waitlist has any explanations or virtues, or whether strict reliance upon a waitlist might be disadvantageous.   
The article admits, for example, that there is already a highly regulated "official waitlist." The Times article doesn't really explain "why" patients like Marcus are skipped.  The Times did commission a survey showing that more organs in such cases go to hospitals with what it characterizes as "close ties" to organ procurement networks. The fact that hospitals with ties to organ procurement organizations receive more organs, however, may just reflect the fact that they conduct more donor recoveries and organ transplants, and are therefore more likely to be able quickly stand up a transplantation surgery reducing risk of loss of a donated organ.  The authors imply that any deviation from the list results from undue and unfair influence, and is therefore suspect, but the authors don't explore alternate explanations.  
The article is replete with strong denunciations by some advocates with little explanation why procurement organizations might "favor" one hospital over another.  Of course, procurement organizations haven't helped themselves, because they have not responded to the criticism.  There is no response from either procurement organizations or hospitalists regarding either the survey findings, or the rationale for anomalies explaining why a person might be "skipped."  I sought a response from two procurement organizations with which I am familiar, sharing the broad outline of my intended article, and I was unable to garner comment or response, but, that may reflect nothing more than a disciplined strategy regarding  public communication.
I am not  a doctor, but I suspect that there may be a variety of reasons, admittedly frustrating to a waitlist patient, that explain such anomalies.  For example, the relative proximity of the patient to the recovered organ (long trips for recovered organs present risks) might explain a skip.  The temporal availability of the patient, transplant teams, and/or operating rooms to make use of the recovered organ might explain anomalies (larger hospitals with large surgical staffs may simply be "ready," and/or one patient may relatively make a better candidate "in the moment" than another, regardless of list placement.  There may also be a variety of risk factors specific to a particular patient, hospital, transplantation, or transport.  Any or all of these seem to be pretty obvious possible explanations for deviating from a list. 
It is also possible that list anomalies occur as a result of the HIV Organ Policy Equity Act (HOPE ACT). What is the Hope Act?  It is the Act which permitted HIV positive individuals to make donations of organs and tissue. Until 2013 it was against federal regulation to transplant organs from someone who was HIV positive into a potential organ recipient, even if the intended organ recipient was also HIV positive. In 2013, these HIV prohibitions were deemed outdated by Congress and lifted. The HOPE Act directed the Health and Human Services (HHS) Secretary to develop guidelines to conduct research relating to HIV positive donors and organ transplantation.
Current regulations ensure that an HIV negative recipient does not receive an organ from a HIV positive donor, but HIV positive donors can donate organs and tissues to other HIV positive recipients. The HOPE Act simply gives more people a chance to donate life. Given the limited number of transplantable organs available for the more than 120,000 people who are awaiting transplants, it makes sense to find all possible ways to safely and ethically save as many lives as possible.  But, it also means that any particular organ may not be suitable for the person at the top of the list.  Of course, these details cannot be shared, due to medical privacy (HIPAA).  A doctor can't tell a reporter or a recipient that an organ is positive or negative because that violates the medical privacy of the organ recipient, potentially disclosing a patient's HIV history. I suspect there are similar restrictions for other health attributes, but I am just spit-balling here. The point is that I would be shocked, given such considerations, if every available donor organ went precisely to the next person on the list.
I get a sense when reading the article that at least some critics treat organs like product deliveries from Amazon: "I ordered first, so I should get mine first." The waitlist, however, isn't a "line" at the car wash where the first in line is always, or even should be, served first. 
I formerly taught medico-legal documentation and deposition preparation and conduct "classes" during Grande Rounds at a local teaching hospital.  I considered the opportunity  to work with such amazing minds a privilege and an honor.   I was amazed and impressed at the vast array of variables and considerations medical professionals in a hospital consider and resolve in making even routine decisions.  My strong suspicion is that the article, while certainly well researched, supported, and written, from the standpoint of a layperson, could not begin to report fairly to a lay audience the myriad reasons a simple list is not reflexively adhered to in making such momentous decisions. That does not mean that there may never be some form of corruption in the system, but the mere possibility of corruption extrapolated from a few cases should be considered critically. 
Regardless, if you are a donor awaiting a transplant, you should be aware of the facts, and better, be prepared for possible frustration and/or disappointment.  I would encourage those in positions of responsibility, if they don't already, to explain to patients and families that the waitlist is not a strict line, and manage expectations, frustrations, and disappointment.  Especially for those clinging to last hopes, honestly managing expectations would seem both moral and necessary. 
I also want to be careful that my criticism of the Times article is not woven into the  rhetorical crutch, "fake news." Reporting that raises awareness, asks questions, and challenges, even if by casting circumstances in the worst possible light, should be celebrated.  I am not suggesting that the authors engaged in shoddy reporting; as discussed I believe that the authors cast is probably limited by the fact that they aren't surgeons, hospitalists, or professionals routinely dealing with organ procurement and transplantation questions or concerns.  Professionals understand and appreciate, or should, that these articles, headlines, and narratives may not reflect the "whole story," just like a client's or patient's fears, apprehensions, or concerns, are usually not based upon the "whole story."  To the anxious or frightened layperson, though, these emotions are the only story.  That is why professionals work so hard to cultivate good productive relationships with clients/patients, and where appropriate, their families, so that their decisions and risks can be evaluated carefully, based upon their specific circumstances, thereby leaving them with only appropriate concerns, and realistic expectations.  Reporters, admittedly, are not in that "business."  
Full disclosure: both my wife and I were Ambassadors for Lifebanc.  My clients can attest, though, that I never, professionally "encourage" or "discourage" donation; as a lawyer my  professional responsibility is to see my client's wishes fulfilled.  Most clients have made decisions regarding donation prior to settling an estate plan. I can sometimes play a role in answering questions regarding the procurement and recovery process, and dispel unfounded fears or concerns (the most common being that the family of of a donor bears the cost of organ recovery), but my role as an "advocate "is appropriately left to seminars, public forums, and articles.          
For more information see Bryan M. Rosenthal, Mark Hansen and Jeremy White, "Organ Transplant System ‘in Chaos’ as Waiting Lists Are Ignored," New York Times, March 10, 2025


Wednesday, April 12, 2023

Shocking Claim- "Comatose People to be Declared Dead for Use as Organ Donors."

A recent article warns that proposed changes to medical standards regarding end of life determinations mean that, "Comatose People to be Declared Dead for Use as Organ Donors."  

The authors are Heidi Klessig, M.D.  a retired anesthesiologist and pain management specialist, and Christopher W. Bogosh, RN-BC, B.Th., a psychiatric mental health registered nurse and author, both observers to the Uniform Law Commission on the RUDDA, and contributors to respectforhumanlife.com. 

The authors have published the troubling article to American Thinker 

The following is an excerpt from the article (a link to the full article follows): 

The law that redefined death in 1981, referred to as the Uniform Determination of Death Act (UDDA), is being revised.  The UDDA states that death by neurologic criteria must consist of "irreversible cessation of all functions of the entire brain, including the brainstem."  However, in actual practice, doctors examine only the brainstem.  The result is that people are being declared dead even though some still have detectable brainwaves, and others still have a part of the brain that functions, the hypothalamus.  Lawyers have caught on, pointing out in lawsuits that the whole brain standard was not met for their clients.  As a result, the Uniform Law Commission (ULC) is working on updates to the UDDA based on proposals from the American Academy of Neurology (AAN).

In the interest of preventing lawsuits, the AAN is asking that the neurologic criteria of death be loosened even further and standardized across the United States.  The revised UDDA is referred to as the RUDDA.  Below is the proposal drafted at the February session of the ULC, which will be debated this summer:

Section § 1. [Determination of Death]

An individual who has sustained either (a) permanent cessation of circulatory and respiratory functions or; (b) permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes, is dead. A determination of death must be made in accordance with accepted medical standards.

Notice that the new neurological standard under (b) does not use the term "irreversible," nor does it include the loss of whole-brain function.  The term "permanent" is being defined to mean that physicians do not intend to act to reverse the patient's condition.  Thus, people in a coma whose prognosis is death will be declared dead under this new standard.  An unresponsive person with a beating heart on a ventilator is not well, but he is certainly not dead!  The Catholic Medical Association and the Christian Medical and Dental Association have written letters to the ULC protesting these changes.

In addition, the AAN proposes that there be no requirement for informed consent before initiating brainstem-reflex testing.  One of the tests is called the apnea test.  During this exam, the patient is removed from the ventilator for 8–10 minutes, attempts to breathe are monitored, and carbon dioxide in the blood is measured.  This test has absolutely no benefit for the patient.  It can only cause harm, as rising levels of carbon dioxide in the bloodstream cause an increase in intracranial pressure, which is hugely detrimental for a brain-injured patient.  The idea that there will be no informed consent requirement for this potentially harmful exam violates the ethical principles of autonomy, justice, beneficence, and non-maleficence.

The UDDA has been controversial since its inception in 1981, and experts on both sides of the issue admit that it has serious flaws.  Most notably, organ donors declared dead under its criteria are, in fact, still alive.  The heart beats, lungs exchange oxygen and carbon dioxide, kidneys produce urine, livers remove toxins, children go through puberty, pregnant women gestate babies, hair grows, and in many cases the brain and body communicate to regulate life-sustaining functions.  Organ donors declared dead under the UDDA do not meet the Dead Donor Rule (DDR) and are exploited for body parts.

In 2018, Harvard Medical School hosted "Defining Death."  At this watershed medical conference about "organ transplantation and the 50-year legacy of the Harvard report on brain death," the experts determined that the UDDA was not true to a biological definition of death and the DDR was violated as a result.

These revelations about UDDA and DDR inconsistencies are not new.  In the 2008 affirmation of the UDDA, "Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics," the chairman, Edmund D. Pellegrino, M.D., pointed this out.  "Ideally," he wrote in his minority dissent, "a full definition would link the concept of life (or death) with its clinical manifestations as closely as possible," and the UDDA does not satisfy these objective findings.  He stated: "The only indisputable signs of death are those we have known since antiquity, i.e., loss of sentience, heartbeat, and breathing; mottling and coldness of skin; muscular rigidity; and eventual putrefaction as the result of generalized autolysis of body cells."

ULC commissioner James Bopp, National Right to Life Committee, argues that people declared dead under the neurologic criterion of the UDDA are entitled to the same protections as unborn babies.  He states these are an "identical debate, just a different context."  Thus, those who vigorously defend life as starting at conception (i.e., at the level of cells) are inconsistent when they accept the UDDA whole-brain definition of death.

In May of 2021, Alan Shewmon, M.D. and 107 experts in medicine, bioethics, philosophy, and law recommended that the UDDA be revised but stated that the RUDDA was not the way to do it.  Shewmon has documented 175 cases of people meeting the neurological standard for death who continued to live on, some for over twenty years.  He has also reported and testified in court on behalf of "brain-dead" children, most notably Jahi McMath.  Although legally dead in California, Jahi experienced puberty, which requires brain and body interaction, and even started to recover before she received her second death certificate five years later.  Many have even recovered and have gone on to live normal lives after a diagnosis of "irreversible cessation of all functions of the entire brain, including the brain stem." 

The ULC solicits expert opinions and suggestions on the proposed changes to the UDDA.  We believe that the changes being proposed to the UDDA will only benefit transplant stakeholders at the expense of the rights of patients and families.  Declaring a comatose, brain-injured patient dead to be able to harvest his organs is an issue of concern to every American, especially since roughly 170 million people are registered as organ donors (see "Cherish Your Life! DON'T Be a Registered Organ Donor").  Shewmon put it best: "Just as cigarette ads are required to contain a footnote warning of health risks, ads promoting organ donation should contain a footnote along these lines: 'Warning: it remains controversial whether you will actually be dead at the time of the removal of your organs.'"  The public deserve a voice at the table before a law is passed that takes away their right to life.

You can read the article here.


Note: Monty L. Donohew has contributed article to American Thinker, several of which have been published.  It is the experience of Monty L. Donohew that the author writes the article's title.

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Monday, March 1, 2021

England's NHS Saves Lives with World Leading "Dead" Heart Transplants

More than 3,000 heart transplants were performed in the United States last year, according to the federal Organ Procurement Transportation Network (OPTN). These 3,000-plus patients were given the gift of life through the selfless act of organ donation by individuals and families who were faced with the opportunity to make a positive impact in the wake of tragedy. 

This number is truly amazing; the first successful heart transplant was performed  a little more than 50 years ago. Since then, heart transplantation has become more routine,  almost considered as routine as a bypass surgery. With advances in transplant technology, more people are seeking heart transplantation.  Tragically, there simply are not enough donor hearts to go around.  

There are currently nearly 4,000 people across the U.S. awaiting donor hearts, according to OPTN data. Unfortunately, a significant number of patients die before suitable donor hearts become available for transplantation. To meet this ever-growing need, the medical community seeks new and advanced procedures and treatments for heart failure while educating healthy community members how truly life-changing the gift of organ donation is for recipients, donors, and their families.

Finding a healthy living heart suitable and available for donation is difficult.  What if, however, hearts that had stopped could be used in donation.  What was once though impossible or unlikely may someday be routine, thanks to the doctors in England's National Health Service (NHS).

Anna Hadley, a 16-year-old from Worcester, waited for nearly two years for a new heart. Now, almost two years later, Anna is healthy and playing hockey again. Anna has British surgeons to thank, as they "carried out the world's first transplants in children using dead hearts that were brought back to life." 

The surgeons used a pioneering machine to reanimate hearts from donors whose hearts stopped. So far, use of the machine has saved the lives of six British children ranging in age form 12 to 16. Each of the transplants occurred during the pandemic. 

Anna was the first to have her life saved by the pioneering machine. She received the call at 2:30am after she had waited almost two years after being diagnosed with restrictive cardiomyopathy. 

Within 24 hours of the operation, Anna was sitting up in bed. Within weeks, Anna was playing hockey again. Anna said, "I just feel normal again. There's nothing I cannot do now."

Source: Andrew Gregory, NHS saves children’s lives with world-first ‘dead’ heart transplants, The Sunday Times (U.K.), February 20, 2021. 

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