organ donation

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 In these patients, the ventilator is withdrawn and organs are quickly taken when cardiac death (DCD) rather than brain death is pronounced.”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.

 

Brain Death: Do We Know Enough?

nancyvalko end-of-life, medical ethics, organ donation

 

The following is my article published in the National Catholic Bioethics Quarterly (Spring 2016): 55-59. © 2016 The National Catholic Bioethics Center Quarterly.

Abstract. Every year, people make decisions based on trust in the certainty of diagnoses of brain death. These decisions range from signing an organ donation card to withdrawing life support from a loved one. Two recent developments have revived concerns about medical standards for determining brain death. One is a recent study on variability in brain death policies in the United States; the other is the filing of a federal lawsuit to rescind the death certificate of Jahi McMath, a teenager who appears to have survived a 2013 declaration of brain death. The author examines these developments and asks whether trust in the certainty of brain-death determinations is currently warranted.

Nancy Valko, RN, ALNC, is a legal nurse consultant and a spokesperson for the National Association of Prolife Nurses. A registered nurse since 1969, she has worked mostly in critical care as well as hospice, oncology, and home health. She is a past co-chair of the St. Louis Archdiocesan Respect Life Committee. She received the People of Life award from the US Conference of Catholic Bishops in 2015.

—————————————————————————

Two recent developments on the controversial issue of brain death have revived concerns about the medical standards currently used for determining brain death. One was the publication of a JAMA Neurology study of 508 US hospitals, titled “Variability of Brain Death Policies in the United States,” by Dr. David Greer et al., which found major variations in their policies for determining brain death. The study concluded that “hospitals should be encouraged to implement the 2010 AAN [American Academy of Neurology] guidelines to ensure 100% accurate and appropriate determination of brain death.”1

The other development surrounds a federal lawsuit pushing to rescind the death certificate of Jahi McMath. McMath, a teenager from Oakland, California, was declared brain dead two years ago but is apparently still surviving and may be showing some signs of improvement.2

Every year, people make decisions—to withdraw life support from loved ones or to sign organ donation cards—based on trust in the certainty of a diagnosis of brain death. Is such trust warranted?

A Short History of US Brain-Death Policies

Although the concept of irreversible coma was first introduced in 1959, the cur- rent legal and medical concept of brain death gained widespread acceptance after the publication, in 1968, of “A Definition of Irreversible Coma,” the report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

The stated purpose of the Harvard report was “to define irreversible coma as a new criterion for death,” because new technology such as ventilators could maintain a patient “whose heart continues to beat but whose brain is irreversibly damaged.” The committee noted that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” The Harvard paper laid out four conditions for a diagnosis of brain death: (1) unreceptivity and unresponsitivity, (2) no movement or breathing, (3) no reflexes, and (4) a flat electroencephalogram, providing confirmatory data that should be utilized “when available.”3

Starting in the early 1970s, various state legislatures and courts acted to turn brain death into a legally recognized standard for determining death by loss of all brain function. Patients declared brain dead could then be removed from life support measures, like mechanical ventilation, without legal ramifications or their organs could be harvested while their hearts were still beating and a ventilator kept their lungs functioning.

In 1981, the US Uniform Determination of Death Act formally added “irreversible cessation of all functions of the entire brain, including the brain stem” to the legal definition of death.4 However, while the act set the general legal standard for determining brain death, it did not dictate the medical criteria. Many state laws  just cite “accepted medical standards” for determining brain death. Over the years, efforts were made to standardize these medical criteria, most recently by the AAN guidelines established in 2010.5

Not All Hospitals Comply with the Guidelines

In an interview with Medscape, David Greer, the lead author of the study in JAMA Neurology, expresses concern that not all of the 508 US hospitals surveyed were “100% compliant” with the 2010 guidelines by the American Academy of Neurology. Of the hospitals surveyed, the Medscape article notes that only “about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination.” 6 The article also notes that not all hospital policies require testing of lower brainstem function to establish the loss of all brain function, and not all comply with other AAN recommendations such as establishing the cause of the brain dysfunction, the absence of effects of specific medications like sedatives, and crucial aspects of the apnea test.

One of the potentially disastrous consequences of these inconsistencies in hospital testing policies is that a person can be treated as a living patient at one hospital but declared brain dead at another.

Would full compliance with the 2010 guidelines “ensure 100% accurate and appropriate determination of brain death”? Probably not, given the findings of the 2010 report updating the AAN guidelines.7 Eelco Wijdicks et al. observe that “many of the details of the clinical neurologic examination to determine brain death can- not be established by evidence-based methods. The detailed brain-death evaluation protocol that follows is intended as a useful tool for clinicians. It must be emphasized that this guidance is opinion-based. Alternative protocols may be equally informative.” They also note that there is “insufficient evidence” to determine such crucial standards as “the minimally acceptable observation period to ensure that neurologic functions have ceased irreversibly,” “the comparative safety of techniques used for apnea testing,” and the accuracy of “newer ancillary tests [in confirming] the cessation of function of the entire brain.”8

The significance of these criteria is highlighted in a 2012 article, “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” by Ari Joffe et al.9 The authors note, “It has been shown that some brain functions continue after accurately clinically diagnosed BD (brain death), including EEG activity in 20%, evoked potential activity in 5%, and hypothalamic neuroendocrine function in > 50%. These activities may be explained by the finding that continued brain blood flow occurs in 5–40% of BD patients, and pathologic destruction of brain does not occur in more than 40% of BD patients (even after over 24–48 hr. of maintained circulation).”10 Thus there seems to be reasonable cause for concern whether even 100 percent compliance with AAN guidelines would completely ensure the accuracy of a diagnosis of brain death or the validity of some critical brain-death tests.

Jahi McMath

In December 2013, thirteen-year-old Jahi McMath suffered cardiac arrest after undergoing surgery for sleep apnea at Children’s Hospital Oakland, in California. Although doctors managed to resuscitate her, they declared McMath brain dead and prepared to remove the ventilator. Hoping she might recover, however, the family insisted that it remain in place.

After several court battles, a judge permitted McMath’s family to transfer her to a facility in New Jersey that allowed the continued use of the ventilator. Two years later, McMath’s family is still fighting, suing in federal court have her death certificate rescinded.11 According to the family’s attorneys, “Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.” 12

A ruling to rescind McMath’s death certificate would have profound implications for the medical and legal determination of brain death, especially since her initial diagnosis was confirmed by multiple doctors in a well-respected hospital.

McMath is not the first person to survive for a prolonged time after a brain- death diagnosis. Alan Shewmon, MD, studied approximately 175 cases of long-term survival after a declaration of brain death, for periods ranging from one week to more than fourteen years.13 In other cases, pregnant women declared brain dead have been able to gestate unborn babies for weeks or months until a healthy delivery.14

Most concerning of all are cases like that of Zach Dunlap, a young man from Oklahoma who was declared brain dead after an all-terrain vehicle accident in 2008. Testing showed no blood flow to his brain, and Dunlap was being considered for organ donation when a relative discovered a physical response from Zach. Four months later and already making plans to return to work, Dunlap appeared on NBC’s Today show, where he told hosts that he heard a doctor say he was dead, and it “just made me mad inside.”15

Alarmingly, there have been other reported “near misses” like Dunlap’s that also did not lead to rigorous medical investigations to determine what went wrong with the initial brain-death determinations. Yet experts continue to maintain that there is “no documented report of patients regaining brain function after being declared brain dead,” although some allow that “maybe mistakes happened and they weren’t reported.”16

Persistent Controversies

Controversy about brain death has simmered for years in bioethical and medical circles. Influential  experts such as Robert Truog and Franklin Miller argue that doctors should drop the rule requiring that people be declared dead before vital organs are taken, and instead merely obtain “valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury.”17

The Catholic Church has been involved in the controversy over brain death since the Harvard report cited Pope Pius XII’s 1957 address “The Prolongation of Life” to support its recommendations.18 Since then, there have been several papal statements and conferences on the determination of brain death. Collectively, these are widely seen to indicate a cautious acceptance of the concept of brain death that is based on the assurance of medical certainty to provide moral certainty.

When the issue is death, medical ethics must be backed up by accurate medical facts. In the case of the legal and medical definition  of brain death as “irreversible cessation of all functions of the entire brain, including the brain stem,”19 medical science, not philosophical speculation, must provide the proof beyond a reasonable doubt.

When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.

Footnotes:

1. David M. Greer et , “Variability of Brain Death Policies in the United States,” JAMA Neurology 73.2 (February 1, 2016): 213, doi: 10.1001/jamaneurol.2015.3943.3943. The updated AAN guidelines are presented in Eelco F. M. Wijdicks et al., “Evidence-Based Guideline Update: Determining Brain Death in Adults—Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology 74.23 (June 8, 2010): 1911–1918.

2. McMath et v. State of California et al., no. 4:2015cv06042 (N.D. Cal. Dec. 23, 2015); see David DeBolt and Malaika Fraley, “Jahi McMath: Family Sues in Federal Court to Have Brain-Dead Girl Declared Alive,” Mercury News, December 24, 2015, http://www.mercurynews.com/.

3. Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, “A Definition of Irreversible Coma,” JAMA 6 (August 5, 1968): 337, doi: 10.1001/jama.205.6.337. P. Mollaret and M Goulon identified irreversible coma in their essay “Le Coma Dépassé (memoire preliminaire),” Revue Neurologique 101.1 (July 1959): 3–15.

4.National Conference of Commissioners on Uniform State Laws, Uniform Determination of Death Act, approved 1980/1981, http://www.uniformlaws.org/.

5. Allison Gandey, “New Brain Death Guidelines Issued,” com, June 10, 2010, http://www.medscape.com/.

6. Pauline Anderson, “Not All Hospital Brain Death Policies Comply with Guidelines,” com, December 30, 2015, http://www.medscape.com/, emphasis added.

7. Wijdicks et al , “Evidence-Based Guideline Update.”

8. Ibid. 1911, 1914, emphasis added.

9. Ari Joffe et , “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” Annals of Intensive Care 2.1 (February 17, 2012): 1–8, doi: 10.1186/2110-5820-2-4.

10. Ibid, 4

11. DeBolt and Fraley, “Jahi McMath”

12. Winkfield v. Children’s Hospital Oakland, no. RG-15760730, first amended com plaint (CA, Ct. Alameda County, Nov. 4, 2015), para. 36, original emphasis.

13. Alan Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Con- sequences,” Neurology 51.6 (December 1998): 1538–1545.

14. Majid Esmaeilzadeh et , “One Life Ends, Another Begins: Management of a Brain-Dead Pregnant Mother—A Systematic Review,” BMC Medicine 8.74 (November 18, 2010): doi: 10.1186/1741-7015-8-74.

15. Natalie Morales, “‘Dead’ Man Recovering after ATV Accident,” NBC News, March 24, 2008, nbcnews.com/.

16. Pauline Anderson, “Not All Hospital Policies ”

17. Robert Truog and Franklin G. Miller, “The Dead Donor Rule and Organ Transplantation,” New England Journal of Medicine 359.7 (August 14, 2008): 675, doi: 10.1056/NEJMp0804474.

18. Ad Hoc Committee of Harvard Medical School, “Definition of Irreversible Coma,” 88 note 1, citing Pius XII, “The Prolongation of Life,” Address to an International Congress of Anesthesiologists (November 24, 1957), The Pope Speaks 4 (Spring 1958): 393–398.

19. Commissioners on Uniform State Laws, “Uniform Determination of Death Act,” sec 1.

“Everybody’s a Winner When Euthanasia Combines with Organ Donation, Say Doctors”

nancyvalko assisted suicide, euthanasia, medical ethics, organ donation

This excellent article by Michael Cook  titled “Everybody’s a Winner When Euthanasia Combines with Organ Donation, Says Doctors” is a must read for anyone concerned about ethics and healthcare.

Michael Cook, the current editor of Mercatornet, writes that

Several Dutch and Belgian doctors have proposed legal reforms to increase the popularity of combining euthanasia and organ donation in the Netherlands and Belgium.

Writing in the Journal of Medical Ethics, they report valuable unpublished information about the prevalence of the procedure. So far, it has been performed only about 40 times in the two countries. However, there is “a persisting discrepancy between the number of organ donors and the number of patients on the waiting lists for transplantation” – which euthanasia patients could help to balance. (Emphasis added)

Ominously, the authors of this British Medical Journal article  titled “Legal and ethical aspects of organ donation after euthanasia in Belgium and the Netherlands”, write that public perception of this formerly abhorrent practice is increasingly positive:

“transplant coordinators in Belgium and the Netherlands notice a contemporary trend towards an increasing willingness and motivation to undergo euthanasia and to subsequently donate organs as well, supported by the increasing number of publications in popular media on this topic.”

and

“In the context of organ donation after euthanasia, the right of self-determination is a paramount ethical and legal aspect. It is the patient’s wish and right to die in a dignified way, and likewise his wish to donate his organs is expressed. Organ donation after euthanasia enables those who do not wish to remain alive to prolong the lives of those who do, and also—compared with ‘classical’ donation after circulatory death—allows many more people to fulfil their wish to donate organs after death.” (Emphasis added)

This slippery slope actually started in 1998 when Jack Kevorkian removed the kidneys of one of his victims and offered them for transplantation. Almost everyone was stunned and horrified. Transplant surgeons refused the organs at that time but the reasons given in some news articles unfortunately had less to do with the ethics than with the concerns over the viability of the organs and the  harvesting technique of the organs themselves.

By 2003, the prestigious journal Critical Care Medicine published an article titled “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Drs. Robert D. Troug and Walter M. Robinson that went even further:

“We propose that individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead”.  (Emphasis added)

Thus, the actual cause of death would be the organ removal which, in itself, would be euthanasia.

We should not assume that legalized organ donation euthanasia can’t happen here in the US when the public has already been softened up for years by a mostly sympathetic media publicizing sad cases like Brittany Maynard’s and the relentless Compassion and Choices campaign to legalize physician-assisted suicide in every US state.

I can even envision a time when organ donation euthanasia could be presented to the public as merely “medically assisted death-with benefits.”