organ donation

Two States Are Facing Challenges in Death Decisions Regarding Death Determination Errors and Assisted Suicide

nancyvalko advance directives, assisted suicide, brain death, civil rights, conscience rights, end-of-life, law, Living wills, medical, medical ethics, mental health, organ donation, suicide

Delaware and Kentucky are facing challenenges to lasws r4gatding end of life deicisions.

In Kentucky, Thaddeus Pope in his January 29th blog Death Determination Errors Addressed in New Legislation states:

“The goal in death determination is 100% accuracy: zero false positives. So, it is regrettable that we need legislation to address roles and responsibilities when a patient who was determined and declared dead is not dead. But we now have such legislation. 

Kentucky H.B. 510 provides that “during any organ donation recovery, preservation, or procurement activity … a pause in procedure shall be initiated if any individual … reports on any of the following: (1) Observed or suspected change in neurological status; (2) Observed or suspected indication of life; or (3) Uncertainty regarding the accuracy or completeness of neurological status or death declaration assessments.” (Emphasis added)

The goal in death determination is 100% accuracy: zero false positives. So, it is regrettable that we need legislation to address roles and responsibilities when a patient who was determined and declared dead is not dead. But we now have such legislation. 

Kentucky H.B. 510 provides that “during any organ donation recovery, preservation, or procurement activity … a pause in procedure shall be initiated if any individual … reports on any of the following: (1) Observed or suspected change in neurological status; (2) Observed or suspected indication of life; or (3) Uncertainty regarding the accuracy or completeness of neurological status or death declaration.”

And in Delaware, a lawsuit has been filed by several disability organizations and others, after the bill was signed by the governor and took effect January 1, 202. the plaintiffs state that:


  1. Delaware’s End of Life Options Act, 16 Del. C. § 2501C, et seq. (“EOLOA” or the
    “Act”), is scheduled to go into effect on January 1, 2026 (or as soon as final regulations are in
    place), and will allow providers, including Advanced Practice Registered Nurses (“APRN”), to
    prescribe drugs—not to alleviate pain or suffering—but to cause the death of the patient and
    intentionally facilitate suicide.

  2. Plaintiffs, people with life-threatening disabilities and organizations that represent
    and advocate for people with life-threatening disabilities, belong to a class of protected individuals
    who are at imminent risk of harm if the Act is allowed to go into effect. To protect themselves
    from this fast-approaching threat, Plaintiffs bring this action to stop Defendants, government
    officials, from putting in place this deadly and discriminatory system. The Act—if allowed to go
    into effect—will steer people with life-threatening disabilities away from necessary lifesaving and
    mental health care, medical care, and disability supports, and toward death by suicide under the
    guise of “mercy” and “dignity” in dying.

  3. Throughout the country, a state-endorsed narrative is rapidly spreading that threatens people with disabilities: namely, that people with life-threatening disabilities should be directed to suicide help and not suicide prevention. This world view is being touted as a common-sense objective: people who have life-threatening disabilities should be able to readily obtain physician-assisted suicide. At its core, this is discrimination plain and simple. With cuts in healthcare spending at the federal level, persons with life-threatening disabilities are now more vulnerable than ever.

  4. EOLOA’s passage is clear and present danger to people with life-threatening
    disabilities in Delaware. Persons who are identified as “terminal”—i.e., people with life-threatening disabilities- are able to obtain assisted suicide. The new law does not require any evaluation, screening, or treatment by a mental health professional for serious mental illness, depression, or treatable suicidality, all of which could are necessary for informed consent and a
    truly autonomous choice, before the lethal prescription is written. The provider need not have
    expertise with the patient’s specific illness or condition and need not be trained on mental health
    symptoms or side effects associated with the patient’s illness or treatment. While the provider is
    supposed to discuss “feasible” alternatives to suicide, including available treatment options and
    the foreseeable risks and benefits of each, the provider is not required to do anything to help the
    patient obtain access to these frequently difficult to obtain services, nor are insurers required to
    cover them.
  1. Assisted suicide under EOLOA violates federal disability rights laws and the U.S.
    Constitution’s Equal Protection clause, which protects people with disabilities from discrimination,
    exclusion, and life-threatening state action. Under federal law, a public entity may not withhold
    services or make services available on unequal terms based on disability. EOLOA, however, does
    just that. EOLOA is offered to people with life-threatening disabilities. Not only is this facially
    discriminatory, it also places persons with disabilities in a much more vulnerable position.

The lawsuit makes several other important points. I suggest anyone concerned with this issue read them all, especially those of us fighting assisted suicide laws.

New York Times: A PUSH FOR MORE ORGAN TRANSPLANTS IS PUTTING DONORS AT RISK

nancyvalko advance directives, assisted suicide, brain death, brain injury, civil rights, euthanasia, law, media, medical ethics, organ donation

A bombshell article in the July 20, 2025, New York Times titled “A Push forA Push for More Organ Transplants Is Putting Donors at Risk More Organ Transplants Is Putting Donors at Risk” states:

“People across the United States have endured rushed or premature attempts to remove their organs. Some were gasping, crying or showing other signs of life.” (Emphasis added).

and:

“Organ transplantation had another record year in 2024. That’s great news for all the recipient patients. But there is increasing scrutiny on the costs of the regulatory incentives pushing this success. An alarming number of donors were still alive as transplantation began. “ (Emphasis added)

The next day, the US HHS (Health and Human Services) published a report, “HHS Finds Systemic Disregard for Sanctity of Life in Organ Transplant System,” that reported:

“The U.S. Department of Health and Human Services (HHS) under the leadership of Secretary Robert F. Kennedy, Jr., today announced a major initiative to begin reforming the organ transplant system following an investigation by its Health Resources and Services Administration (HRSA) that revealed disturbing practices by a major organ procurement organization.

Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” Secretary Kennedy said. “The organ procurement organizations that coordinate access to transplants will be held accountable. The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.” (Emphasis added)

HRSA directed the Organ Procurement and Transplantation Network (OPTN) to reopen a disturbing case involving potentially preventable harm to a neurologically injured patient by the federally-funded organ procurement organization (OPO) serving Kentucky, southwest Ohio, and part of West Virginia. Under the Biden administration, the OPTN’s Membership and Professional Standards Committee closed the same case without action.

Under Secretary Kennedy’s leadership, HRSA demanded a thorough, independent review of the OPO’s conduct and the treatment of vulnerable patients under its care. HRSA’s independent investigation revealed clear negligence after the previous OPTN Board of Directors claimed to find no major concerns in their internal review.

HRSA examined 351 cases where organ donation was authorized, but ultimately not completed. It found:

  • 103 cases (29.3%) showed concerning features, including 73 patients with neurological signs incompatible with organ donation.
  • At least 28 patients may not have been deceased at the time organ procurement was initiated—raising serious ethical and legal questions.
  • Evidence pointed to poor neurologic assessments, lack of coordination with medical teams, questionable consent practices, and misclassification of causes of death, particularly in overdose cases. (All emphasis added)

Vulnerabilities were highest in smaller and rural hospitals, indicating systemic gaps in oversight and accountability. In response to these findings, HRSA has mandated strict corrective actions for the OPO and system-level changes to safeguard potential organ donors nationally. The OPO must conduct a full root cause analysis of its failure to follow internal protocols—including noncompliance with the five-minute observation rule after the patient’s death—and develop clear, enforceable policies to define donor eligibility criteria. Additionally, it must adopt a formal procedure allowing any staff member to halt a donation process if patient safety concerns arise.

Secretary Kennedy will decertify the OPO if it fails to comply with these corrective action requirements [PDF].

HRSA also took action to make sure that patients across the country will be safer when donating organs by directing the OPTN to improve safeguards and monitoring at the national level. Under HRSA’s directive, data about any safety-related stoppages of organ donation called for by families, hospitals, or OPO staff must be reported to regulators and the OPTN must update policies to strengthen organ procurement safety and provide accurate, complete information about the donation process to families and hospitals.

These findings from HHS confirm what the Trump administration has long warned: entrenched bureaucracies, outdated systems, and reckless disregard for human life have failed to protect our most vulnerable citizens. Under Secretary Kennedy’s leadership, HHS is restoring integrity and transparency to organ procurement and transplant policy by putting patients’ lives first. These reforms are essential to restoring trust, ensuring informed consent, and protecting the rights and dignity of prospective donors and their families.

HHS recognizes House Committee on Energy and Commerce Chairman Brett Guthrie’s (KY-02) bipartisan work to improve the organ transplant system and looks forward to working with him and other issue-area champions in Congress to deliver reforms.” (All emphasis added)”

CONCLUSION

As I wrote in my October 18, 2022, blog “PLEASE READ BEFORE YOU AGREE TO BE AN ORGAN DONOR”:

“But are ethical lines being crossed in the zeal to obtain organs to transplant?

While most people presume that organs can be removed and transplanted only after “all efforts to save your life have been exhausted” and brain death has been determined, that presumption is no longer necessarily true. (Emphasis added)

Now, organ donation can occur with a person who is in a coma and considered close to death but who does not meet the criteria for brain death. In those cases, an organ donor card or relatives who have agreed to withdraw a ventilator (a machine that supports or maintains breathing) and have the person’s organs removed for transplant if or when the heartbeat stops. This was called DCD or donation after cardiac death until some doctors found that the stopped heart could be successfully restarted it in the patient receiving the transplant!

Now, that ethically questionable procedure is called donation after circulatory death (also DCD) since circulation stops when the heart stops.

If circulation does not stop within 60 minutes, the organs are deemed to be too damaged for transplant and the patient dies without donating organs.

IT GETS WORSE

A September 29, 2022, article in Medpage titled “No Brain Death? No Problem. New Organ Transplant Protocol Stirs Debate-Is it ethical to pull the plug in patients who aren’t brain dead, then restart their hearts?” reported on a new procedure to get more organs:

“With little attention or debate, transplant surgeons across the country are experimenting with a kind of partial resurrection: They’re allowing terminal patients to die, then restarting their hearts while clamping off blood flow to their brains. The procedure allows the surgeons to inspect and remove organs from warm bodies with heartbeats.” (Emphasis added)

The article also said that this new procedure is being criticized by doctors like Dr. Wes Ely and the American College of Physicians, who warned that the procedure raises “profound ethical questions regarding determination of death, respect for patients, and the ethical obligation to do what is best.”

and

“PRESUMED CONSENT AND LAW

Another problem is “presumed consent,” which is the assumption that everyone is willing to donate his/her organs unless there is evidence that they would not want to donate. Illinois narrowly avoided a “presumed consent” statute a few years ago in which people who didn’t want to donate had to file an opt-out document with the Secretary of State. (Emphasis added)

Some countries already have “presumed consent” laws, most recently in England, which states:

“it will be considered that you agree to become an organ donor when you die, if:

  • you are over 18;
  • you have not opted out;
  • you are not in an excluded group”

Even more horrifying, there have also been proposals to link organ donation and assisted suicide as “a potential solution to the organ scarcity problem”. Countries like Belgium and the Netherlands already allow this.

CONCLUSION

Organ donation can truly be “the gift of life”, and innovations such as adult stem cells. The donation of a kidney or part of a liver by a living person generally poses no ethical problems and holds much promise to increasingly meet the needs of people with failing organs. I have a grandson whose life was saved by a stem cell transplant, and another relative who has had 2 kidney transplants.

Personally, I have offered to be a living donor for friends, and my family knows that I am willing to donate tissues, such as bone, corneas, and skin, that can be used after natural death.

Everyone can make his or her own decision about organ donation, but we all must have the necessary information to make an informed decision. (Emphasis added)

Is Donation after Circulatory Death a “Game Changer” for Heart Transplant?

nancyvalko assisted suicide, brain death, brain injury, culture, disability, end-of-life, euthanasia, futility, law, medical ethics, organ donation, suicide, ventilators/life support

In 2002, I wrote a paper titled “Ethical Implications of Non-Heart-Beating Organ Donation” (NHBD) and presented it at Trinity College at a medical ethics conference. At that time, brain death organ donation was well-known, but NHBD was virtually unknown to the public although it comprised about 2% of organ donations at that time.

As I wrote then:

“It is now apparent that the number of organs from people declared brain dead will never be enough to treat all patients who need new organs. ” and “doctors and ethicists have turned to a new source of organs — patients who are not brain dead but who are on ventilators and considered “hopeless”. In these patients, the ventilator is withdrawn and organs are quickly taken when cardiac death (DCD) rather than brain death is pronounced.”

Now, the term “Donation after Circulatory Death” (DCD) is used instead and means:

“Circulatory death occurs when the heart has irreversibly stopped beating and when circulation and oxygenation to the tissues irreversibly stops.” (Emphasis added)

However, with heart transplantation, the heart will be restarted as explained in a March 24, 2023 Medscape article “A ‘Game Changer’ for Heart Transplant: Donation After Circulatory Death Explained”.

In the article, Adam D. DeVore, MD, MHS is interviewed by Ileana L. Piña, MD, MPH and explains how this works and why he is excited:

“Adam D. DeVore, MD, MHS: In the field of heart transplant, DCD or donation after circulatory death is really a game changer. For decades now, we’ve been doing heart transplants from donors who die or have been declared brain dead.

There’s a whole population of potential donors who have very similar neurologic injuries — they’re just not technically declared brain dead — whose organs the family would like to donate. We didn’t have a way before.”

“There are two mechanisms. The family would withdraw care. Somebody affiliated with the hospital would declare that the donor has died. There’s usually a standoff period. That is a little variable, but it’s around 5 minutes.” (All emphasis added)

and added that then:

“…There are then two ways where that heart could be resuscitated or revived, outside the body on the organ care system. Or it could remain in the body through normothermic regional perfusion (NRP), or they’ll go on cardiopulmonary bypass and re-perfuse the heart in the room, and then look at the heart and try to evaluate it before donation. The rest of that donation looks just like every other brain-dead donation.”

…I remember when we were first starting this, I was thinking of how we would explain this to potential recipients and what would this look like. It turns out that something terrible has happened, and families that want to donate organs are relatively enthusiastic and less focused on the details.” (All emphasis added)

ETHICAL CONCERNS

In another March 23, 2023 Medscape article titled “Does New Heart Transplant Method Challenge Definition of Death?, Sue Hughes, a journalist on Medscape Neurology, writes:

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

When the NRP technique was first used in the US, these ethical questions were raised by several groups, including the American College of Physicians (ACP).

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

Harry Peled, MD, Providence St Jude Medical Center, Fullerton, California, co-author of a recent Viewpoint on the issue said that:

“There are two ethical problems with NRP, he said. The first is whether by restarting the circulation, the NRP process violates the US definition of death, and retrieval of organs would therefore violate the dead donor rule.

“American law states that death is the irreversible cessation of brain function or of circulatory function. But with NRP, the circulation is artificially restored, so the cessation of circulatory function is not irreversible,” Peled points out.

The second ethical problem with NRP is concern about whether, during the process, there would be any circulation to the brain, and if so, would this be enough to restore some brain function? Before NRP is started, the main arch vessel arteries to the head are clamped to prevent flow to the brain, but there are worries that some blood flow may still be possible through small collateral vessels.” (Emphasis added)

Nader Moazami, MD, professor of cardiovascular surgery, NYU Langone Health, New York City, is one of the more vocal proponents of NRP, stating that:

“”Our position is that death has already been declared based on the lack of circulatory function for over 5 minutes and this has been with the full agreement of the family, knowing that the patient has no chance of a meaningful life. No one is thinking of trying to resuscitate the patient. It has already been established that any future efforts to resuscitate are futile. In this case, we are not resuscitating the patient by restarting the circulation. It is just regional perfusion of the organs.” and “We are arguing that the patient has already been declared dead as they have a circulatory death. You cannot die twice.” (Emphasis added)

CONCLUSION

Ms. Hughes also wrote in her article that:

“Heart transplantation after circulatory death has now become a routine part of the transplant program in many countries, including the United States, Spain, Belgium, the Netherlands, and Austria.”

And in the US, “348 DCD heart transplants were performed in 2022, with numbers expected to reach 700 to 800 this year as more centers come online.” And “It is expected that most countries with heart transplant programs will follow suit and the number of donor hearts will increase by up to 30% worldwide because of DCD. ”

So how important is it to have strict medical ethics standards in organ donations?

In a February 9, 2023 Transplant International article titled “Organ Donation After Euthanasia in Patients Suffering From Psychiatric Disorders: 10-Years of Preliminary Experiences in the Netherlands“, it was reported that:

“Over the ten-year study period 2012–2021 59,546 patients underwent euthanasia of whom 58,912 suffered from a somatic (physical) disorder. The number of patients that underwent euthanasia for an underlying psychiatric disorder was 634 (1.1%). An estimated 10% (5955) of patients who undergo euthanasia in general are medically eligible to donate one or more organs (11).” (Emphasis added)

Organ transplants can be wonderful and lifesaving, but we must know all the facts, be able to trust our healthcare providers, and especially not allow the “slippery slope” of legalized assisted suicide/euthanasia to get any steeper.

Potentially Lethal Problems with the Uniform Determination of Death (UDDA) and Its Proposed Revision

nancyvalko brain death, law, medical ethics, organ donation, ventilators/life support

In a December, 2022 Wall Street Journal article “Doctors and Lawyers Debate Meaning of Death as Families Challenge Practices-Changing the determination of brain death potentially affects organ donation”, law and ethics Professor Thaddeus Pope stated that:

“Without brain death, most of the U.S. organ transplant system goes away,” (Emphasis added)

Ironically and on March 16, 2023, the Wilkes Journal-Patriot newspaper in North Carolina published an article “‘Clinically dead’ pastor recovering about Ryan Marlow, a father of three young children who was pronounced *“clinically deceased” and brain dead” after “a severe case of Listeriosis impacted Ryan’s neurological system, causing abscesses on his brain stem and leaving him in a deep coma” in August, 2022. 

“The hospital recorded his time of death but he remained on life support to keep his organs live before removing them since he was an organ donor.” The wife insisted on further testing and that showed he had blood flow to his brain.

According to the news article, “On Oct. 6, 2022, he awoke from a coma by indicating yes to a simple question from a therapist”,  Ryan is now home and making more progress with rehab.

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the new innovation of brain death organ transplantation. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for several minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told not to worry because greater minds than mine had it all figured out.

It was years before I realized that these doctors did not have the answers to my concerns either. After more investigation, I found that my questions were valid.

I also discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery and that there were cases of “brain dead” people who lived for months or years.

In my 2021 blog “Rethinking Brain Death and Organ Donation“, I wrote:

“I have been writing for many years about the implications of brain death, the lesser known “donation after cardiac/circulatory death”, diagnosed brain death cases like the supposedly “impossible” prolonged survival and maturation of Jahi McMath, and the unexpected recoveries like Zack Dunlap’s.

Last August, I wrote about the World Brain Death Project and the effort to establish a worldwide consensus on brain death criteria and testing to develop the “minimum clinical standards for determination of brain death”. (Emphasis added)

I also wrote about the current effort “to revise the (US) Uniform Determination of Death Act (UDDA) to assure a consistent nationwide approach to consent for brain death testing” that could otherwise lead to a situation where ”a patient might be legally dead in Nevada, New York, or Virginia (where consent is not required). But that same patient might not be legally dead in California, Kansas, or Montana (where consent is required and might be refused)”. (All emphasis added)”

In 2021, 107 experts in medicine, bioethics, philosophy, and law, are challenging the proposed revisions to the UDDA. While they admit that they “do not necessarily agree with each other on all aspects of the brain-death debate or on fundamental ethical principles”, they do object to three aspects of the revision to:

“(1) specify the Guidelines (the adult and pediatric diagnostic guidelines) as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an apnea test without consent and even over a proxy’s objection.” (All emphasis added)

These experts’ objections to those proposed revisions are that:

” (1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function (a small but essential part of the brain helps control the pituitary gland and regulates many body functions) is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD (brain death) in a non-BD patient….provides no benefit to the patient, does not reliably accomplish its intended purpose”… and “should at the very least require informed consent, as do many procedures that are much more beneficial and less risky.” (All emphasis added)

And these experts further state that:

“People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion.”

AUTOMATED ORGAN DONOR REFERRAL

In the January 2023 United Network for Organ Sharing (UNOS) document “Actions to strengthen the U.S. organ donation and transplant system” has several suggestions such as:

“Seek authorization for the OPTN (Organ Procurement and Transplantation Network) to collect or receive data on ICU deaths for patients under age 70 for faster and more accurate monitoring of organ procurement organization (OPO) performance”

and

“The OPTN will continue to advocate for a national investment in the automation of donor referral” that “would ensure every
potential donor is referred every time. Every hospital with the ability to ventilate patients would need to participate, a requirement that is beyond the authority of UNOS or the OPTN. Automated donor referral would be a significant innovation. Our nation has the technology to automate this important step, but it will not occur without a national commitment.” (All emphasis added)

CONCLUSION

Many years ago, I served on a hospital ethics committee when a doctor complained that he could not arrange an organ transplantation from an elderly woman in a coma caused by a stroke because she “failed” one of the hospital’s mandated tests for brain death. He said he felt like he was “burying two good kidneys”.

Although I already knew that the medical criteria used to determine brain death vary — often widely — from one hospital to another, one young doctor checked our area hospitals and came back elated after he found a hospital that did not include the test the elderly woman “failed”. He suggested that our hospital adopt the other hospital’s criteria to allow more organ donations.

When I pointed out that the public could lose trust in the ethics of organ donations if they knew we would change our rules just to get more organ transplants, I was told that I being hard-hearted to people who desperately needed such organs.

Unfortunately, now some countries’ healthcare ethics have degenerated to the point where euthanasia by organ donation is legally allowed.

Personally, I am all for the ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and one of our grandsons was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas, skin and bones that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and accurate information for truly informed consent as well as conscience rights because good medical ethics are the foundation of a trustworthy healthcare system.

Are Near-Death Experiences Real?

nancyvalko brain death, CPR, end-of-life, family, medical ethics, organ donation

In a November 4, 2022 Medscape article titled “‘Lucid Dying’: EEG Backs Near-Death Experience During CPR”, researchers found brain wave recordings taken during in hospital cardiac arrest resuscitation (cardiopulmonary resuscitation) lends support to near-death experiences reported by some people who survived cardiac arrest.

In the Medscape article and according to lead investigator Sam Parnia, MD, PhD:

“These recalled experiences and brain wave changes may be the first signs of the so-called ‘near-death’ experience, and we have captured them for the first time in a large study,” lead investigator Sam Parnia, MD, PhD, with NYU Langone Health, says in a news release.

Identifying measurable electrical signs of lucid and heightened brain activity during CPR, coupled with stories of recalled near-death experiences, suggests that the human sense of self and consciousness, much like other biological body functions, may not stop completely around the time of death, Parnia adds.” (Emphasis added)”

According to the article, the researchers used “audiovisual testing of awareness with continuous real-time EEG and cerebral oxygenation monitoring” during the resuscitation.

While only 53 of the 567 patients survived (9.3%), 28 survivors completed interviews with 11 reporting “unique, lucid experiences during resuscitation.”

According to Dr. Parnia:

“Our understanding of death has gone through a seismic shift in the last few years,” and

“The biological discoveries around death and the postmortem period are completely different to the social conventions that we have about death. That is, we perceive of death as being the end, but actually what we’re finding is that brain cells don’t die immediately. They die very slowly over many hours of time,” Parnia noted. (Emphasis added)

Dr. Parnia presented the findings November 6 at a resuscitation science symposium at the American Heart Association (AHA) Scientific Sessions 2022 in Chicago.

The Medscape article also noted that not everyone agrees:

“Ajmal Zemmar, MD, PhD, with University of Louisville, Louisville, Kentucky, noted that several studies, including this one, “challenge the traditional way that we think of death — that when the heart stops beating that’s when we die.”

The observation that during cardiac arrest and CPR, the brain waves are still normal for up to an hour is “fairly remarkable,” Zemmar told theheart.org | Medscape Cardiology.

“However, whether there is conscious perception or not is very hard to answer,” Zemmar cautioned. 

“This type of research tries to bridge the objective EEG recordings with the subjective description you get from the patient, but it’s hard to know when conscious perception stops,” he said.”

WHAT DOES THIS ALL MEAN?

Over the decades, there have been many studies of near-death experiences and an October 31,2022 Medscape article by a nurse practitioner who describes how both negative and positive near-death experiences can impact an individual.

There is even a 2020 Frontiers in Neurology article “The Neurology of Death and the Dying Brain: A Pictorial Essay” that explores some of the potential effects of issues like near-death experiences on the clinical determinations of death and organ donation.

But whether or not you believe in near-death experiences, there is one crucial lesson here: We must always treat any ill person-awake or presumed unconscious-with the respect due any person when we talk to and care for them.

I have often told the story of “Mike”, a young man catastrophically injured in a car crash whose doctor said the if he survived, he would be a “vegetable”. We nurses talked to Mike and eventually he started to respond to us but not the doctor.

Mike was shipped off to a nursing home but almost two year later, he returned to thank us and told us he was getting married. When we laughed and told him how he started to respond to us but not the doctor, Mike became very serious and said he would not respond to the doctor because he heard the doctor call him a “vegetable”!

CONCLUSION

But my favorite story is about working on a medical floor caring for an elderly gentleman who was dying and showed no awareness of his 4 adult sons sitting at his bedside.

I encouraged his sons to talk to him, but they said they didn’t know what to say and didn’t think he could hear anyway.

I took the man’s hand and noticed that it was strong and callused like a man who worked with his hands.

I asked the sons was their dad did and they all started relating stories about his love of farming and then told funny stories about how their dad reacted to their antics growing up.

Pretty soon, all the sons were laughing and telling their dad how much they appreciated him as I quietly left at the end of my shift.

When I returned the next day for my next shift, I was not surprised to learn that the dad had peacefully died during the night with his sons at his side. But I was surprised to find that one of the sons stayed until I came back and wanted to talk to me.

“Lady, you were right! He did hear us!” he told me.

It turned out that the sons had continued talking to their dad after I left and when they said they were ready to leave, their dad opened his eyes, looked at them, smiled and then closed his eyes and peacefully died.

What a wonderful memory for his sons-and me!

PLEASE READ BEFORE YOU AGREE TO BE AN ORGAN DONOR

nancyvalko assisted suicide, brain death, brain injury, end-of-life, euthanasia, medical ethics, organ donation

Whether we are renewing our driver’s licenses, watching the TV news or just picking up a newspaper, it’s impossible to miss the campaign to persuade us to sign an organ donation card such as this one. We see story after story about how grieving relatives have been comforted by donating a loved one’s organs after a tragic death, and how grateful the people are whose lives have been changed by the “gift of life”.

But are ethical lines being crossed in the zeal to obtain organs to transplant?

While most people presume that organs can be removed and transplanted only after “all efforts to save your life have been exhausted” and brain death has been determined, that presumption is no longer necessarily true.

Now, organ donation can occur with a person who is in a coma and considered close to death but who does not meet the criteria for brain death. In those cases, a organ donor card or relatives who have agreed to withdraw a ventilator (a machine that supports or maintains breathing) and have the person’s organs removed for transplant if or when when the heartbeat stops. This was called DCD or donation after cardiac death until some doctors found that the stopped heart could be successfully restarted it in the patient receiving the transplant!

Now, that ethically questionable procedure is called donation after circulatory death (also DCD) since circulation stops when the heart stops.

If circulation does not stop within 60 minutes, the organs are deemed to be too damaged for transplant and the patient dies without donating organs.

IT GETS WORSE

Last month a September 29, 2022 article in Medpage titled “No Brain Death? No Problem. New Organ Transplant Protocol Stirs Debate-Is it ethical to pull the plug in patients who aren’t brain dead, then restart their hearts?” reported on a new procedure to get more organs:

“With little attention or debate, transplant surgeons across the country are experimenting with a kind of partial resurrection: They’re allowing terminal patients to die, then restarting their hearts while clamping off blood flow to their brains. The procedure allows the surgeons to inspect and remove organs from warm bodies with heartbeats.” (Emphasis added)

The article also said that this new procedure is being criticized by doctors like Dr. Wes Ely and the American College of Physicians that warned the procedure raises “profound ethical questions regarding determination of death, respect for patients, and the ethical obligation to do what is best.”

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the innovation of brain death organ transplantation. We trusted the experts and the prevailing medical ethic of the utmost respect for every human life.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for up to 10 minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told that greater minds than mine had it all figured out so I shouldn’t worry.

It was awhile before I realized that these doctors did not have the answers themselves and that my questions were valid.

I also discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were cases of “brain dead” people like Jahi McMath living and maturing for years after a diagnosis of brain death or even recovering like Zack Dunlap. 

If the legal definition of brain death is truly “irreversible cessation of all functions of the entire brain, including the brain stem”, these cases would seem to be impossible.

PRESUMED CONSENT AND LAW

Another problem is “presumed consent” which is the assumption that everyone is willing to donate his/her organs unless there is evidence that they would not want to donate. Illinois narrowly avoided a “presumed consent” statute a few years ago where people who didn’t want to donate had to file an opt out document with the Secretary of State.

Some countries already have “presumed consent” laws, most recently in England that states:

“it will be considered that you agree to become an organ donor when you die, if:

  • you are over 18;
  • you have not opted out;
  • you are not in an excluded group”

Even more horrifying, there have also been proposals to even link organ donation and assisted suicide as “a potential solution to the organ scarcity problem”. Countries like Belgium and the Netherlands already allow this.

CONCLUSION

Organ donation can truly be “the gift of life”, and innovations such as adult stem cells and the donation of a kidney or part of a liver by a living person generally pose no ethical problems and hold much promise to increasingly meet the needs of people with failing organs. I have a grandson whose life was saved by a stem cell transplant and another relative who has had 2 kidney transplants.

Personally, I have offered to be a living donor for friends and my family knows that I am willing to donate tissues like bone, corneas, skin, etc. that can be donated after natural death.

Everyone can make his or her own decision about organ donation but it is crucial that we all have the necessary information to make an informed decision..

Rethinking Brain Death and Organ Donation

nancyvalko assisted suicide, brain death, euthanasia, law, medical ethics, organ donation

I have been writing for many years about the implications of brain death, the lesser known “donation after cardiac/circulatory death”, diagnosed brain death cases like the supposedly “impossible” prolonged survival and maturation of Jahi McMath, the unexpected recoveries like Zack Dunlap’s and even that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed.

Last August, I wrote about the World Brain Death Project and the effort to establish a worldwide consensus on brain death criteria and testing to develop the “minimum clinical standards for determination of brain death”. (Emphasis added)

I also wrote about the current effort “to revise the (US) Uniform Determination of Death Act (UDDA) to assure a consistent nationwide approach to consent for brain death testing” that could otherwise lead to a situation where ”a patient might be legally dead in Nevada, New York, or Virginia (where consent is not required). But that same patient might not be legally dead in California, Kansas, or Montana (where consent is required and might be refused)”. (All emphasis added)

The Uniform Declaration of Death Act (UDDA) was drafted in 1981 by a President’s Commission study to brain death and approved by both the American Medical Association (AMA) and the American Bar Association (ABA). It was intended to provide a model for states to emulate.

It offered 2 definitions of when a person could be declared legally dead to align the legal definition of death with the criteria largely accepted by the medical community:

“Irreversible cessation of circulatory and respiratory functions (the traditional definition of death); or

Irreversible cessation of all functions of the entire brain, including the brain stem (brain death)” (Emphasis added)

The UDDA in some form has since been adopted by all US states and the District of Columbia.

THE PUSHBACK TO REVISE THE US UNIFORM DETERMINATION OF DEATH ACT (UDDA)

But now, 107 experts in medicine, bioethics, philosophy, and law, are challenging the proposed revisions to the UDDA. While they admit that they “do not necessarily agree with each other on all aspects of the brain-death debate or on fundamental ethical principles”, they do object to three aspects of the revision to:

“(1) specify the Guidelines (the adult and pediatric diagnostic guidelines) as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an apnea test without consent and even over a proxy’s objection.” (All emphasis added)

These experts’ objections to those proposed revisions are that:

” (1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function (a small but essential part of the brain helps control the pituitary gland and regulates many body functions) is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD (brain death) in a non-BD patient….provides no benefit to the patient, does not reliably accomplish its intended purpose”… and “should at the very least require informed consent, as do many procedures that are much more beneficial and less risky.” (All emphasis added)

And these experts further state that:

“People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion.”

CONCLUSION

Many years ago, I served on a hospital ethics committee when a doctor complained that he could not arrange an organ transplantation from an elderly woman in a coma caused by a stroke because she “failed” one of the hospital’s mandated tests for brain death. He said he felt like he was “burying two good kidneys”.

Although I already knew that the medical criteria used to determine brain death vary — often widely — from one hospital to another, one young doctor checked our area hospitals and came back elated after he found a hospital that did not include the test the elderly woman “failed”. He suggested that our hospital adopt the other hospital’s criteria to allow more organ donations.

When I pointed out that the public could lose trust in the ethics of organ donations if they knew we would change our rules just to get more organ transplants, I was told that I being hard-hearted to people who desperately needed such organs.

Unfortunately, now some countries’ healthcare ethics have degenerated to the point where euthanasia by organ donation is legally allowed.

Personally, I am all for the ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and one of our grandsons was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas, skin and bones that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and accurate information because good medical ethics are the foundation of a trustworthy healthcare system.

The World Brain Death Project: What It Means

nancyvalko brain death, end-of-life, futility, law, medical ethics, organ donation, ventilators/life support

THE HISTORY OF BRAIN DEATH

In December of 1967, the first successful heart transplant was performed in South Africa by Dr. Christian Barnard. At that time, there were no guidelines for the diagnosis of death for beating heart donors.

In September of 1968, the Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death was published with the purpose of defining irreversible coma as a new criterion for death.

This was done for two stated  reasons:

  1. “Improvements in resuscitative and supportive measures have led to increase efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual  whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals and on those in need of hospital beds already occupied by these comatose patients.“
  2. “Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” (All emphasis added)

This report was quickly accepted by many and in 1968, the Uniform Anatomical Gift Act was passed in the US  as a regulatory framework for the donation of organs, tissues and other human body parts. The Act allowed the donation of whole or part of a human body to take effect upon or after the death of the donor.

The Uniform Declaration of Death Act (UDDA) was drafted in 1981 by a President’s Commission study to brain death and approved by both the American Medical Association (AMA) and the American Bar Association (ABA). It was intended to provide a model for states to emulate.

It offered 2 definitions of when a person could be declared legally dead to align the legal definition of death with the criteria largely accepted by the medical community:

  1. “Irreversible cessation of circulatory and respiratory functions (the traditional definition of death); or
  2. Irreversible cessation of all functions of the entire brain, including the brain stem (brain death)” (Emphasis added)

The UDDA in some form has since been adopted by all US states and the District of Columbia.

However, in the June 2020 issue of the American Journal of Bioethics,  the well-known lawyer/ethicist Thaddeus  Mason Pope wrote about a current effort “to revise the Uniform Determination of Death Act (UDDA) to assure a consistent nationwide approach to consent for brain death testing.” (Emphasis added)

Why just consent to brain death testing?

According to Mr. Pope:

“Right now, a patient might be legally dead in Nevada, New York, or Virginia (where consent is not required). But that same patient might not be legally dead in California, Kansas, or Montana (where consent is required and might be refused). (Emphasis added)”

Instead, Mr. Pope proposes adding this to the Uniform Determination of Death Act (UDDA):

“Reasonable efforts should be made to notify a patient’s legally authorized decision-maker before performing a determination of death by neurologic criteria, but consent is not required to initiate such an evaluation”. (Emphasis added)

Mr. Pope states that typically, the Uniform Law Commission (ULC) follows a four-step process to change a law but notes that the Healthcare Law Committee has already skipped the first three steps and is ready for drafting the new language in the fourth step.

Ironically, there was a case last year in Michigan where the parents of a teenager  pushed for a Bobby’s Law after their son was taken off life support after being declared brain dead despite their objections. The law would “require a minor’s parents to consent to withhold or withdraw life-sustaining treatment or to give do-not-resuscitate orders before medical professionals could end life support for a juvenile” and also allow the parents to defer an apnea test (taking the person off a ventilator to see if the person is able to breathe on his or her own) required to determine brain death. (Emphasis added)

THE WORLD BRAIN DEATH PROJECT

In an August 3, 2020 article in the Journal of the American Medical Association (JAMA) titled “Determination of Brain Death/Death by Neurologic Criteria- The World Brain Death Project” , the authors state that due to “inconsistencies in concept, criteria, practice, and documentation of brain death/death by neurologic criteria (BD/DNC) both internationally and within countries”, there is a need to “formulate a consensus statement of recommendations on determination of BD/DNC”. (Emphasis added)

In a August 3, 2020 Medpage article “Brain Death: What Does It Mean?” on the World Brain Death Project, the writer notes that the “guidelines recommend that consent not be required for apnea testing because of concerns over prolonged somatic support” while quoting a doctor who disagreed:

“Ostensibly, families should be asked to provide consent because the apnea test may lead to cardiovascular collapse in some patients, classifying it as procedure with risk,” (All emphasis added)

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the new innovation of brain death organ transplantation. We trusted the experts and the prevailing medical ethic of the utmost respect for every human life.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for up to 10 minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told that greater minds than mine had it all figured out so I shouldn’t worry.

It was years before I realized that these doctors did not have the answers themselves and that my questions were valid.

I discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were cases of “brain dead” people like Jahi McMath living for  years after a diagnosis of brain death or even recovering like Zack Dunlap. 

If the legal definition of brain death is truly “irreversible cessation of all functions of the entire brain, including the brain stem”, these cases would seem to be impossible.

CONCLUSION

The World Brain Death Project is riddled with potential problems in establishing a worldwide consensus on brain death criteria and testing using a “set of criteria that satisfies the lowest acceptable standard for practice”. (Emphasis added) And changing the US Uniform Determination of Death Act to supersede states requiring consent before brain death testing will not inspire trust in the healthcare system or the law.

Personally, I will not sign an organ donor card or allow my organs to be taken by donation after cardiac death (DCD), a new category of severely brain-injured people who are not brain dead but who are on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”. The ventilator is removed and the patient’s heart is expected to stop. (However, a 2016 study showed that 27% of potential donors did not die within the window specified for organ recovery.)

Instead, my family knows that I am willing to donate tissues like corneas, skin, bones, etc. that can be ethically donated after natural death.

It is vitally important that everyone understands all the facts before signing an organ donor card.

And we all should demand transparency and rigorous medical ethics from our healthcare system.

 

 

 

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

nancyvalko advance directives, brain injury, disability, medical ethics, organ donation, ventilators/life support

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as “definite, but extremely limited, awareness of self or environment, and limited means of communication”. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled “Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

“When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention “1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or limited consciousness with verbal and physical stimulation. I also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate healing of the brain. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

The Changing Rules for Organ Donation

nancyvalko assisted suicide, brain injury, disability, medical ethics, organ donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.“

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) …Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.