brain death

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.

Think the Political and Cultural Divisions in Our Country are Bad? The Divisions in Medical Ethics Could Cost Your or a Loved One’s Life!

nancyvalko abortion, advance directives, AMA, assisted suicide, brain death, brain injury, Compassion & Choices, conscience rights, euthanasia, food and water, law, medical ethics, nursing, Planned Parenthood

I wanted to be a nurse since I was 5. I was drawn to nursing not only because I wanted to help people but also because medical ethics standards were so high, especially in contrast to some of the corrupt business practices that I saw.

I graduated from a Catholic nursing school in 1969 and spent the next 50 years working mostly in intensive care but also in home health and hospice, oncology (cancer), kidney dialysis, volunteer work and on ethics committees.

I first noticed the change in medical ethics when the US Supreme Court’s Roe v. Wade decision in 1973 legalized abortion for the first three months of pregnancy. I was working in intensive care at the time and found that my fellow medical professionals who supported the abortion decision angrily rebuked those of us who were shocked that the first rule of medical ethics we were taught-First, Do No Harm-was eroding.

Then in 1982, my doctor husband and I were shocked by the Baby Doe case where the parents received a judge’s approval to let their newborn son with Down Syndrome die instead of repairing an easily correctable hole between the tube that leads from the throat to the stomach and the  tube that leads from the throat to the windpipe and lungs.  While lawyers were appealing his case and many parents (including my husband and me) wanted to adopt Baby Doe, the newborn starved and dehydrated to death without the desperately needed surgical repair.

My husband asked “What has happened to medical ethics??” but we both knew the answer: babies with Down Syndrome are often unwanted and aborted.

Five months after Baby Doe died, our third child Karen was born with Down Syndrome and a reparable heart defect but the heart doctor gave us a choice to “let” our baby die without surgery. We refused but my former trust in the medical system was shattered.

After I suddenly became a single parent in 1988, I had to return to a paid nursing job to support my three children but found a drastically different medical ethics system.

I found that during the 1970s, medical ethics began to evolve into the newer “bioethics”, even in Catholic hospitals.

This new bioethics has essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”) Emphasis added.

Unfortunately, those principles are malleable and then used to justify actions and laws that would have been unthinkable when I graduated from nursing school. That bioethics mindset changed not only medical and nursing education but also the principles that informed our work.

Even the Hippocratic Oath, the oldest and most widely known treatise on medical ethics that forbade actions such as abortion and euthanasia that medical students routinely took upon graduation, has now been revised or dropped at many medical schools.

SOME MEDICAL ETHICS DIVISIONS THAT CAN COST YOU OR A LOVED ONE’S LIFE

Abortion

The American Medical Association, the American Congress of Obstetricians and Gynecologists and the American Nurses Association and other healthcare organization that used to condemn abortion are now supporting “abortion rights”.

Abortion on demand and taxpayer-funded has now been deemed a “civil right” by Planned Parenthood and many Democratic politicians throughout pregnancy to birth and even beyond. Alternatives to abortion such as free pregnancy tests, counseling, ultrasounds, maternity and baby clothes, diapers, car seats, bassinets, etc. are not options at Planned Parenthood but rather at non-profit crisis pregnancy centers.

As a parent of an unwed teenage daughter, I support these services and give thanks for my now 22 year old granddaughter.

Assisted suicide/euthanasia

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Treatments could be ethically refused when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube or even spoon feedings to cause or hasten a patient’s death. And it was unthinkable that medical professionals could assist even a dying patient’s suicide.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote a 1969 article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added).

By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law and in 1990, The US Congress passed the Patient Self-Determination Act that requires information to be given to patients about their rights under state laws governing advance directives (commonly called “living wills), including the right to accept or refuse medical or surgical treatments.

Now, 8 states and the District of Columbia have assisted suicide laws and Compassion and Choices, the largest advocacy group for medically assisted suicide, is using the Covid 19 pandemic to push for telehealth (the provision of healthcare remotely by means of telecommunications) for medically assisted suicide.

Infanticide

In my nursing school 50 years ago, we were taught medical ethics and one example used was the case of a newborn with Down Syndrome who needed life-saving surgery but whose parents refused, choosing to let him die. We were told that the law would protect such children from medical discrimination-even by the parents.

Now we have cases like Charlie Gard and Simon Crosier and others whose parents chose life for their babies with disabilities but were thwarted by doctors and courts.

Organ donation

When I started working in an ICU in 1971, I had questions about the brain death diagnosis for organ harvesting but was told not to worry because there were strict rules.

However and over subsequent years, I discovered that the rules for organ donation have been changing from brain death to other criteria including severe brain injury. There have even been proposals for “presumed consent” state laws where people would have to register an “opt-out” or be automatically presumed to consent to organ donation.

I do not have an organ donor card nor encourage others to sign one. Instead, I once offered to give a friend one of my kidneys as a living donor. Although I was not able to donate then, my family knows that I am willing to donate tissues like corneas, bone, etc. that can be ethically donated after natural death and will only agree to that donation

Conscience rights

Doctors and nurses used to be protected when asserting their conscience rights when refusing to deliberately hastening or causing a patient’s death.

Now, even that protection-which protects both patients and medical professionals-is under attack.

I discovered this personally several years ago when I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who didn’t stop breathing after his ventilator was removed.

CONCLUSION

The bottom line is that everyone must remain vigilant when they or a loved one becomes seriously ill, regardless of the hospital or institution. It is also important not to be afraid to ask questions.

There are also non-denominational, non-profit groups like the National Association of Pro-life Nurses, the Healthcare Advocacy and Leadership Organization and state and national pro-life organizations that have much useful information and resources for patients, families and the public.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us. We need to demand transparency and the highest ethical standards from our doctors and healthcare system before they can earn our trust.

And without a change in laws, policies and attitudes promoting deliberate death as an answer to human suffering, those of us medical professionals who believe we should never cause or hasten anyone’s death may become an endangered species-as well as our medically vulnerable patients.

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.

 

 

 

Strongest “Simon’s Law” Yet is Passed in Iowa

nancyvalko brain death, brain injury, futility, medical ethics, ventilators/life support

When baby Simon Crosier was born with Trisomy 18  and a heart defect in 2010, his parents and brothers fell in love with him despite his life-threatening diagnosis and the medical community’s opinion that Trisomy 18 is “incompatible with life”.

However, just days before three month old Simon was scheduled to see a cardiac surgeon, his parents begged for help at the Catholic hospital treating Simon when his condition started to deteriorate. They were shocked when the staff did not intervene. They did not know that the hospital had made their baby a Do Not Resuscitate and that Simon was given only so-called “comfort feeds” due to a secret futility policy. They had to helplessly watch as Simon died in their arms.

Heartbroken and outraged but determined that this would not happen to another child, the Crosiers went to legislator Bill Kidd who formulated Simon’s Law. After five long years of frustration even getting the bill out of committee, Simon’s Law was finally and unanimously passed in the Missouri legislature and signed by Governor Mike Parson last year.

The law prohibits “any health care facility or health care professional from instituting a do-not-resuscitate or similar order without the written or oral consent of at least one parent or legal guardian of a non-emancipated minor patient or resident.”

I testified on Simon’s Law myself because when my own daughter Karen was born in 1982 with Down Syndrome and a heart defect, I was tipped off that my pediatrician had secretly given Karen a Do Not Resuscitate order against my expressed wishes because she felt I “was too emotionally involved with that retarded baby”. I protested and the order was withdrawn.

During the fight for Missouri’s Simon’s Law, other states passed similar laws. Some require only that parents be informed that doctors plan to write a DNR order for a child while others prohibit writing the order over parental objections. Hospital ethics committees are usually involved, especially when such cases go to court. And some states like Texas have problematic laws that give objecting parents 10 days to find a new healthcare facility if they disagree with doctors and ethics committees who decide to take a child off life-sustaining treatment.

However, the strongest type of “Simon’s Law” yet was just signed into law in Iowa on June 29, 2020 by Governor Kim Reynolds.

The law states that:

“A court of law or equity shall not have the authority to require the withdrawal of life-sustaining procedures from a minor child over the objection of the minor child’s parent or guardian, unless there is conclusive medical evidence that the minor child has died and any electronic brain, heart, or respiratory monitoring activity exhibited to the contrary is a false artifact.” (Emphasis added)

This is stunning, especially since it requires conclusive medical evidence that the child has died using the most stringent criteria of no brain, heart or respiratory activity. (As one legislator explained in a video, the “false artifact” provision would prevent a “crooked parent” from keeping the child on life support indefinitely in a felony murder situation.)

In recent years, we have seen court cases like the teenager Jahi McMath who lived for years and even seemed to improve after a diagnosis of brain death and now the case of Baby Tinslee with heart and lung problems whose doctors want to remove her ventilator against the parents’ wishes.

At the very least, this new Iowa law illustrates the necessity of better legal protections for both medically vulnerable children and their parents.

A Legacy for Jahi McMath

nancyvalko brain death, brain injury, food and water, futility, medical ethics, ventilators/life support

As a mother who has lost two beloved daughters, my heart goes out to Jahi McMath’s  mother Nailah Winkfield after the recent loss of her daughter after an almost 5 year battle to save her and have California rescind her death certificate after doctors concluded that Jahi was “brain dead”.

Jahi McMath was only 13 years old when she suffered complications after what was supposed to be a routine tonsillectomy and was declared “brain dead”. But instead of just accepting the diagnosis, her mother insisted that Jahi continue to be treated with a ventilator and have a feeding tube in the hope that she could improve.

The California hospital refused and a death certificate was issued for Jahi. The case made national news with influential ethicists like Arthur Caplan, PhD stating about Jahi that “You can’t really feed a corpse” and “She is going to start to decompose.” Other experts like Dr. Alan Shewmon disagreed.

Jahi’s mother went to court but a judge declared that Jahi met California’s criteria for brain death and that the hospital could remove Jahi’s  ventilator. However, the judge stayed the order for awhile so Jahi’s mother could appeal.

Instead and with the help of lawyers and The Terri Schiavo Life & Hope Network ,  Jahi’s mother was able to get her daughter transferred to New Jersey, a state that allows a religious exemption for determining death solely on the basis of the stopping of breathing and heartbeat instead of “brain death”.

After the transfer, Jahi’s  family released videos showing that not only did Jahi’s  body not deteriorate but also that Jahi seemed to be improving and moving her toes.

Sadly, Jahi unexpectedly died June 22, 2018 from excessive bleeding and liver failure after an operation for an intestinal problem. Jahi’s mother says she does not regret the years-long efforts to save her daughter and maintains that “Jahi was able to communicate with me with her hands,” “Sometimes her feet, sometimes her head, but we spoke with her hands.”

A SURPRISING DEVELOPMENT

On April 11, 2018 and before Jahi died, the Harvard Medical School held a conference on “Brain Death and the Controversial Case of Jahi McMath”.

The results of this conference were released just days after Jahi’s  death and, according to The Mercury News, said that:

” Jahi McMath’s  brain showed subtle signs of improvement over the five-year span following the original declaration that she was brain-dead — suggesting a legal ‘resurrection’ from death to life and challenging our widely held understanding of what it means to be officially dead.” (Emphasis added)

And also that Jahi:

“continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.” (Emphasis added)

Dr. Robert Truog, the director of the Harvard Center for Bioethics who organized the conference, has long maintained that the legal definition of brain death as the “irreversible cessation of all functions of the entire brain, including the brain stem” was a  “legal fiction”.

But in a July 2, 2018 Mercury News article “Jahi McMath improved after she was declared brain-dead, doctors say”, Dr. Truog also said that “brain death” does not necessarily signify biological death but merely the extreme end of the spectrum of brain injury and that:

“Even if (“brain dead”) patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead.” (Emphasis added)

In the meantime, Jahi McMath now has two death certificates- one in California and one in New Jersey-and her family has a malpractice lawsuit against the original hospital.

CONCLUSION

Jahi McMath leaves behind many who mourn her but also the achievement of bringing public attention to the problems with the “brain death” diagnosis.

Unfortunately, as one new bioethicist wrote in a blog “Redefining Death in the Law” after attending the Harvard conference, with the legal concept of “brain death” undermined, death itself may be reduced to merely a personal choice:

“In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.” (Emphasis added)

Instead, I would submit that what we really should be doing is giving every brain-injured patient time, treatment and a chance to recover as fully as possible.

Now that would be a great legacy for Jahi McMath!

 

 

Doctors Face Scrutiny About Defining Brain Death

nancyvalko brain death, brain injury, medical ethics, ventilators/life support

Most people who sign organ donor cards believe what organ donation campaigns tell us, such as:

“A person who has sustained a severe brain injury, such as from an accident, stroke or lack of oxygen is put on artificial support.

Doctors work hard to save the patient’s life, but sometimes there is a complete and irreversible loss of brain function. The patient is declared clinically dead. Only then is donation an option.” (Emphasis added)

This is termed “brain death” and organs are harvested while the patient is still on a ventilator (breathing machine) and has a heartbeat.

But as a May 29, 2018 Wall Street Journal article “Doctors Face Scrutiny About Defining Death- As families challenge the determination of brain death, physicians are changing their approach.”, the assumptions about brain death are now being challenged because of cases like Jahi McMath, a 13 year old girl who suffered complications after a 2013 tonsillectomy in California and was declared “brain dead” but who is still alive in New Jersey after her parents refused to allow the ventilator to be removed.

With this article as well as a February 5, 2018 New Yorker magazine article titled “What Does It Mean to Die?” about the McMath case, the public is now becoming aware of the ethical, legal and medical controversies surrounding “brain death” and questions are being asked.

One doctor quoted in the Wall Street Journal article stated:

“Dr. Ross believes states should adopt laws that would allow people to choose their preferred definition (of death). One likely consequence would be that physicians wouldn’t do the brain-death examination if an individual doesn’t want death determined based on neurological criteria, she says.

“For some of us, it is more about the quality of life rather than quantity of life,” she says.” (Emphasis added)

Alarmingly, the use of “quality of life” determinations as a basis for withdrawal of treatment decisions expected to end in death are already a serious problem when it comes to people with brain injuries or disabilities.

And doctors like Dr. Doyen Nguyen are writing articles like “Brain Death and True Patient Care” that cite encouraging results regarding survival and even some good recoveries when severely brain-injured patients received newer treatments like body cooling and neuro-intensive care.

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 that 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 before their ventilators were removed and that there were many cases of “brain dead” people who lived for months or years and even grew proportionally and achieved puberty.

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

And when I served on a hospital medical ethics committee, I was horrified when one doctor found a less rigorous set of brain death tests at another local hospital and proposed that we adopt this standard so that more of our patients could be declared “brain dead” for organ donation.

Investigating further, I also found “near-miss” cases like Zach Dunlap’s. Zach Dunlap is a young man who was declared brain dead after an accident in 2007. Testing showed no blood flow to his brain and he was being considered for organ donation when a relative discovered a physical response. Four months later, Zach was making plans to return to work. In an interview, he said he heard a doctor say he was dead and it “just made me mad inside”.

CONCLUSION

As I pointed out in my Spring, 2016 NCBC Quarterly journal article titled “Brain Death: Do We Know Enough?” :

“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.” (Emphasis added)

Personally, I am not against all organ donation.

In the past, I have offered to be a living donor for a friend who needed a kidney, watched my grandson cured of a rare disease through a bone marrow transplant and told my family that I wanted to donate my corneas and any other tissues that can be taken after natural death.

I am open to new facts but, until then, I refuse an apnea test or any other test to specifically determine brain death if I have a severe brain injury.

And I will not sign an organ donor card.

 

 

Do We Know Enough About Brain Death?

nancyvalko brain death, medical ethics, organ donation

Just last month, there were two major developments reported on the controversial issue of brain death. One was an article about a lawsuit to revoke the death certificate of Jahi McMath, a California teenager who was declared brain dead 2 years ago but is still alive and apparently showing some signs of improvement.

The other was a December 30, 2015 article in Medscape, a website for medical professionals that requires subscription, titled “Not All Hospital Brain Death Policies Comply With Guidelines” . The article reports on a medical journal study titled “Variability of Brain Death Policies in the United States.”

Jahi McMath

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, criticized the judge’s decision for Jahi’s family, declaring that Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”

Now, 2 years after Jahi was declared brain dead, her family is in federal court suing to revoke her death certificate because as their experts contend

“At this time, 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.”

A future ruling revoking Ms. McMath’s death certificate would be groundbreaking.

“Variability of Brain Death Policies in the United States.”

In this December 28, 2013 Journal of the American Medical Association Neurology article, a study was done of 508 US hospital policies on brain death determination.

Alarmingly, the article states that hospital brain death criteria requirements “are not 100% compliant” even with updated 2010 guidelines by the American Academy of Neurology which require only one examination to determine brain death.

And of the total 508 hospitals, the article states 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. Many policies still allow for more junior physicians to determine brain death, the authors noted.” (Emphasis added)

Also disturbing, the article noted that some policies didn’t require testing of lower brainstem function (required for a finding of irreversible loss of all brain functions) with less than 80% of the policies requiring the absence of a cough reflex. Only 57.2% of hospital brain death policies required that oxygen be given to maintain oxygenation during the critical apnea test to determine if a patient can take breaths off a ventilator, even though low a low oxygen level can lead to more brain damage.

In an effort to reassure, Gene Sung, MD, past-president, Neurocritical Care Society, and director, Division of Neurocritical Care and Stroke at UCLA claims that he

agreed that there have there have been no documented reports of regaining function after a declaration of brain death. “But still, we don’t know for sure; maybe mistakes happened and they weren’t reported,” he said. (Emphasis added)

Actually, there have been multiple reported cases of people regaining at least some function after a brain death declaration such as Zach Dunlap (who fully recovered) as well as Jahi McMath.

If as Dr Greer, the lead author of the study, states “This is one of those diagnoses where we need to be correct 100% of the time”, must we not rigorously examine such cases to determine if or why there was a misdiagnosis to ensure that current brain death guidelines really hold up to scrutiny?

Besides the potential premature loss of lives, our medical integrity is at stake and we medical professionals must prove worthy of the trust society gives us.