brain injury

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

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

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

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

and:

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

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

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

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

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

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

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

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

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

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

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

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

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

CONCLUSION

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

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

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

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

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

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

IT GETS WORSE

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

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

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

and

“PRESUMED CONSENT AND LAW

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

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

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

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

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

CONCLUSION

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

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

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

FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE

nancyvalko assisted suicide, brain injury, conscience rights, disability, education, end-of-life, euthanasia, food and water, futility, law, Living wills, medical, medical ethics, nursing, pro-life

Before the famous Terri Schiavo food and water case gained national attention 20 years ago, Dr. Harvath and I wrote this Op-Ed in the St. Louis Post-Dispatch (no longer online) about the Nancy Cruzan casw, an earlier case of withdrawing food and water from a “so-called “vegetative state”‘ My family was furious when it was pusblished and told me that I was being “mean” to the family.

Unfortunately, such removal has become common and even recently, has resulted in a brother’s death.

Not surprisingly, so-called “assisted suicide” is now allowed in many states and countries

Nancy Valko, RN

Here is our op-ed:
Friday, August 12, 1988
FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE

By Susan Harvath and Nancy Guilfoy Valko                                                                    

Just a few years ago the Missouri Legislature passed a ”living will” law that specifically excluded food and water from the kinds of care that may be withdrawn from a patient. In 1984, the National Conference of Catholic Bishops stated that legislation should ”recognize the presumption that certain basic measures such as nursing care, hydration, nourishment and the like must be maintained out of respect for the human dignity of every patient.”

Therefore, it is hoped that the Missouri Court of Appeals will overturn the recent Circuit Court decision that would deny tube feedings for Nancy Cruzan, a severely disabled woman cared for at the Missouri Rehabilitation Center. The anguish felt by the Cruzan family, which initiated the suit, is understandable. However, directly causing the death of an innocent person – even for reasons of mercy – violates that person’s basic human rights.

The Cruzan case is perceived by many to be an issue of allowing a person to die. Cruzan has been categorized by some experts as being in a ”persistent vegetative state,” an unfortunate and imprecise term at best. However, she is not dying or brain-dead. Rather, she is severely disabled from brain damage and needs no special technology to survive. Withdrawing her feeding tube would not ”allow” her to die – it would ”force” her to die. She would not die from her injuries, but rather from starvation and dehydration.

Also, starvation and dehydration cause a protracted, agonizing death in a fully conscious person. Some experts have stated that Cruzan would feel no pain if her feedings were stopped. Yet Cruzan’s nurses have testified that she has cried, smiled and even laughed in response to stimuli.

The possibility of pain during the length of time before death occurs has led some to propose lethal injections as a more ”humane” way to cause death than starvation. The passive euthanasia of withdrawing feeding logically leads to active euthanasia by injection or other means. Both are unacceptable.

A recent trend has been to classify tube feedings as medical treatment. However, unlike other medical treatments, denial of food from any person (sick or healthy, in or out of coma) will always result in that person’s death.

Ethically, treatments may be withdrawn if they are useless or burdensome to the patient. However, tube feedings are not excessively expensive or burdensome to the patient and do maintain life and prevent the discomfort of hunger and thirst. In deciding what treatment may ethically be withdrawn one must be careful to judge the treatment itself, not the ”quality” of the patient’s life. A person’s limitations do not decrease a person’s humanity or worth.

In the past few years, we have seen many court cases similar to Cruzan’s in other states. Some have involved people less severely disabled than Cruzan. A recent case in North Dakota resulted in a judgment that even feedings by mouth may be stopped. In most cases, it is not the patient who requests that feedings be stopped but rather a third party, usually a family member. Often, as in the Nancy Cruzan case, there is no clear and convincing evidence that the patient would even want the feedings stopped.

Some courts have gone even further and have stated that third parties do not need the approval of a court before a patient’s food and water is withdrawn unless there is disagreement, for example, among family members. This trend has unfortunate implications for all people with mental impairments.

There is a vast difference between not prolonging dying and causing death. In the last two decades, we have seen killing promoted as a humane and compassionate response to unwanted unborn children, newborns with handicaps, and the terminally ill. Let us not add a new category of people (the non-dying, severely disabled) to the list of expendable human lives.

Nancy Guilfoy Valko, R.N., is co-chairperson, and Sue Harvath is program director of the St. Louis Archdiocesan Pro-Life Committee.

One In Four Brain Injury Patients Who Appear Unresponsive Respond Covertly

nancyvalko assisted suicide, brain injury, culture, disability, education, food and water, futility, medical ethics, vegetative state, ventilators/life support

Back in May, I wrote the blog “New Study: Brain-injured patients who died after life support ended may have recovered” about a 7 1/2 year study of 1392 traumatic brain injury patients in ICU at 18 US trauma centers.

The researchers designed a mathematical model to calculate the likelihood that life-sustaining treatment would be discontinued “based on demographic, socioeconomic factor and injury characteristics” and then “paired patients continuing on life-sustaining treatment to individuals with similar moded scores but for whom life-sustaining treatment was stopped.”

They found that of the survivors who did not have life-sustaining treatment withdrawn, “more than 40% recovered at least some independence.” (Emphasis added)

This led one researcher to conclude that:

““Predicting who will recover following severe traumatic brain injury, and to what degree, can be challenging. Yet, families are often asked to make decisions about continuing or withdrawing life support, such as mechanical breathing, within just 72 hours of the injury,” Bodien said.

“This decision is based largely on whether the clinical team believes that recovery is possible,” she added. “It is unknown whether some people who died because life support was discontinued could have survived and recovered had life support been continued.” (All emphasis added)

NEW STUDY

Now a newer study, published in August, states that one in Four Brain Injury Patients Who Appear Unresponsive Respond Covertly | MedPage Today, finding that functional MRI and EEG tests can detect awareness in coma or vegetative states.

The authors explain that:

“Cognitive-motor dissociation — a phenomenon that occurs when patients who appear unresponsive perform cognitive tasks that can be detected on functional MRI (fMRI) or electroencephalography (EEG) — occurred in one in four people with severe brain injury, a prospective cohort study found.”

The study evaluated 241 unresponsive patients with brain injury who were given verbal commands, such as to imagine playing tennis or opening and closing their hands.

Of these, 60 patients (25%) repeatedly showed brain activation on fMRI or EEG indicating they were covertly following instructions, reported Nicholas Schiff, MD, of Weill Cornell Medicine in New York City, and co-authors in the 

Cognitive-motor dissociation was associated with younger age, longer time since injury, and brain trauma as an etiologic factor. In total, 11 patients with cognitive-motor dissociation were assessed with fMRI only, 13 were assessed with EEG only, and 36 with both techniques.

“This research shows that a substantial fraction of apparently unresponsive, severely brain-injured persons are aware and can engage in sustained cognitive activity,” Schiff told MedPage Today. These findings importantly point to the need to establish infrastructure to evaluate patients and to begin efforts to test possible therapies to help them.” (All emphasis added)

CONCLUSION

I have worked with brain-injured patients for decades both as a nurse and as a volunteer and I personally saw many amazing recoveries or improvements despite dire predictions and/or recommendations of life support removal.

One of the most amazing cases was a woman with disabilities whose husband wanted to remove life support as the doctors recommended.

As she personally told me, she frantically tried to move her hands to protest but her gestures were seen as seizures and she was given sedatives.

She persisted until finally, one nurse said she might be trying to tell us something and gave her a paper and pencil.

The patient wrote d-i-v-o-r-c-e.

She not only lived but became active in the disability community fighting assisted suicide!

“New Study: Brain-injured patients who died after life support ended may have recovered”

nancyvalko bereavement, brain injury, disability, education, end-of-life, futility, grief, medical, medical ethics, nursing, vegetative state, ventilators/life support

Over the years, I’ve written about several of my patients like “Mike”, “Jack”, Katie” and “Chris” in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have 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 consciousness. Personally, I have only seen one person who did not improve much from the so-called “vegetative” state during the approximately two years I saw him weekly.

Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma.

Now, there is an important new study “New Study: Brain-injured patients who died after life support ended may have recovered”

As the article states:

“Using data gathered over a 7 1/2-year period on 1,392 traumatic brain injury patients in intensive care units at 18 U.S. trauma centers, the researchers designed a mathematical model to calculate the likelihood that life-sustaining treatment would be discontinued. They based their model on demographics, socioeconomic factors and injury characteristics.

Then, they paired patients continuing on life-sustaining treatment to individuals with similar model scores, but for whom life-sustaining treatment was stopped.

Based on follow-up, the estimated six-month outcomes for a significant proportion of the withdrawn group were either death or recovery of at least some independence in daily activities. Of the survivors in the not-withdrawn group, more than 40% recovered at least some independence.” (All emphasis added)”

and

“While many people recover consciousness over a few hours or a day, others remain in the intensive care unit, relying on life support, such as a breathing tube, said Bodien, who also is an assistant professor in the department of physical medicine and rehabilitation at Spaulding Rehabilitation Hospital in Charlestown, Mass.

“Predicting who will recover following severe traumatic brain injury, and to what degree, can be challenging. Yet, families are often asked to make decisions about continuing or withdrawing life support, such as mechanical breathing, within just 72 hours of the injury,” Bodien said.

“This decision is based largely on whether the clinical team believes that recovery is possible,” she added. “It is unknown whether some people who died because life support was discontinued could have survived and recovered had life support been continued.”

Currently, no medical guidelines or precise algorithms determine which patients with severe traumatic brain injury are likely to recover. The most common reason families opt for withdrawing life support measures is physicians relaying information that suggests a poor neurologic prognosis.“

And:

“In the study, researchers found that some patients for whom life support was withdrawn may have survived and recovered some independence a few months after injury. Postponing decisions on withdrawing life support may be helpful for some patients, they noted.” (All emphasis added)

ADVOCATING FOR BRAIN-INJURED PATIENTS

I personally know how important and often difficult it is for healthcare professionals like myself as well as families when doctors recommend withdrawing treatments on a comatose patient.

For example and many years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, “Rose”, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with the speed of this recommendation even though the rest of the family was ready to go along with the doctors.

As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.

About six weeks after the initial phone call, my nurse friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.

“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”

CONCLUSION

In 1983, I personally dealt with a withdrawal of treatment situation like this in my own family when my baby daughter with Down Syndrome and a severe heart defect developed pneumonia was placed on a ventilator. She was unresponsive and critically ill.

We hoped to get her stable enough for her planned heart surgery.

One day, a young resident came in and suggested “getting this over with” by removing her ventilator and “letting her die”. I told him that I would sue if he tried.

I went to the chairman of pediatric cardiology whom I knew well and told him what happened and the chairman said he would fire him. Instead, I suggested that he try to educate the young doctor first but, if he didn’t get the point, then he should be fired.

Karen did eventually die in the ICU on the ventilator but I was comforted by the fact that her death was not unnecessarily hastened as well as the fact that later, this wonderful chairman started the first clinic for people with Down Syndrome in the US to deal with their health issues.

This important study should be mandatory reading for all healthcare professionals and families who need to know the facts.

Important Position Paper on Criteria for Brain Death and Organ Donation: A Call to Action

nancyvalko assisted suicide, brain death, brain injury, Canada, conscience rights, culture, education, end-of-life, euthanasia, medical ethics, ventilators/life support

I am a signatory on this statement and it deserves to be read and shared. Although the statement touches on Catholic teaching, it is primarily is about science and ethics. Please read the statement and press release.

The statement, “Catholics United on Brain Death and Organ Donation: A Call to Action”, was published on February 27, 2024. It was prepared by Joseph Eble, a physician and President of the Tulsa Guild of the Catholic Medical Association; John Di Camillo, an ethicist of The National Catholic Bioethics Center; and Peter Colosi, a philosophy professor at Salve Regina University.

As a nurse, I have been writing about this topic for years, most recently in my May, 2021 blog “Rethinking Brain Death and Organ Donation” and my experience serving on an ethics committee at a hospital where a patient “failed” one of the hospital’s brain death tests and thus could not have her organs removed.

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.

I was also alarmed when a 2011 Illinois almost passed a “presumed consent for organ donation” law in 2011 that would allow presumed consent unless a person ” opt(s) of the presumed donation by executing an anatomical gift as otherwise provided in the Act or by filing with the Secretary of State an organ donor opt out document. ” (Emphasis added) Thankfully, it was defeated especially with the help of the disability group Not Dead Yet.

FINDINGS OF THE POSITION PAPER

“At least half of donors declared brain-dead are actually alive when their organs are removed, according to the position paper endorsed by 151 Catholic health care professionals, theologians, philosophers, ethicists, lawyers, apologists, pro-life advocates, and others, including a brain death survivor and a professional organization.” (There is now a webpage of some of the people diagnosed as brain dead who “lived to tell the tale”.)

“Catholic United explains that the criteria for brain death establish only partial loss of brain function. This is now abundantly clear based on scientific studies, a recent effort to lower the legal standard for death, and updated brain death guidelines issued in October 2023.” (All emphasis added)

The statement calls for an effort “to unite against the utilization of the current brain death criteria” because they do not ensure that patients are dead. They recommend concrete action steps to protect vulnerable patients, enable informed decisions, identify better criteria for determining actual death, and protect the conscience rights of healthcare professionals and organizations”.

Also “Catholics United bridges a divide among faithful Catholics about whether the concept of brain death aligns with Church teaching. Some Catholics hold that brain death represents true death when there is complete and irreversible cessation of all brain activity, often called whole brain death. Others hold that brain death does not represent true death. Since the existing criteria establish only partial loss of brain function, all the endorsers—whether they accept or reject whole brain death as true death—agree that “the current brain death criteria in widespread use do not provide moral (prudential) certainty of death.” (Emphasis added)

RECOMMENDATIONS

The statement “calls on health care professionals and institutions to cease organ harvesting that relies on the inadequate criteria, noting that 70% of all donors are declared dead using brain death criteria. “ (Emphasis added)

Given the lack of moral certainty of death whenever the current brain death criteria are used, the statement affirms that “a clear majority of vital organ donors can be presumed alive at the time of organ harvesting.” Since the Catholic Church forbids removing vital organs when this would kill the patient, “it is therefore wrong to remove organs from patients declared dead using these inadequate criteria.”

Catholics United makes a number of other strong recommendations, including:

  • Declining to be an organ donor at the Department of Motor Vehicles.
  • Refusing to be an organ donor after death in advance directives.
  • Improving education on end-of-life care and organ donation at the pastoral level.
  • Identifying criteria that will establish certainty of death.
  • Advocating for conscience protection rights for health care professionals and institutions.

The statement also cites:

“Current president and co-founder of the pro-life advocacy group American Life League, Judie Brown, has decided to update its Loving Will Comfort and Care Directive in accord with the new recommendations. “I think that any organization that has a pro-life document addressing wishes at the end of life needs to be updated in view of this article,” said Ms. Brown.”

CONCLUSION

Unfortunately, now some countries’ healthcare ethics have even degenerated to the point where eight countries including Canada, the Netherlands, Spain, and Belgium allow organ donation after euthanasia by “combining medical assistance in dying (MAiD) with donations after circulatory determination of death (DCDD) is known as organ donation after euthanasia (ODE)”. (Emphasis added)

Personally, I am all for the ethical donation of tissues like bone, skin, corneas, etc. after natural death. And I am also a strong supporter of living donation. For example, I volunteered to donate one of my kidneys to a friend years ago and one of our grandsons was saved in 2013 by an adult stem cell transplant donated by a living person.

Hopefully, this statement can help all of us to better protect ourselves and vulnerable patients at the end of life- especially when it comes to organ donation-as well as promoting a dignified, humane and peaceful end of life.

Progress in the War Against Conscience Rights

nancyvalko abortion, AMA, ANA, assisted suicide, brain injury, civil rights, Compassion & Choices, conscience rights, culture, education, end-of-life, euthanasia, food and water, futility, law, medical, medical ethics, nursing, Planned Parenthood, pro-life, vegetative state

As I wrote in my 2016 blog “Conscientious Objection, Conscience Rights and Workplace Discrimination” :

The tragic cases of Nancy Cruzan and Christine Busalacchi , young Missouri women who were claimed to be in a “persistent vegetative state” and starved and dehydrated to death, outraged those of us in Missouri Nurses for Life and we took action.

Besides educating people about severe brain damage, treatment, cases of recovery and the radical change in medical ethics that could lead to the legalization of euthanasia, we also fought for healthcare providers’ rights against workplace discrimination for refusing to participate in deliberate death decisions. We talked to nurses who were threatened with termination.

Although Missouri had some protections against forcing participating in abortion, there were no statutes we could find where health care providers were protected against being forced to participate in deliberate death decisions. We were also told by some legislators that our chance of success was almost nil.

Nevertheless, we persisted and after years of work and enduring legislators watering down our original proposal to include lethal overdoses and strong penalties, Missouri Revised Statutes, Section 404.872.1 was finally signed into law in 1992. It states:

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

PROGRESS DURING THE TRUMP ADMINISTRATION

In 2018, the Trump administration announced a new Conscience and Religious Freedom Division  in the department of Health and Human Services’ Office for Civil Rights (OCR) to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”. The division specifically mentions “issues such as abortion and assisted suicide (among others) in HHS-funded or conducted programs and activities” and includes a link to file a conscience or religious freedom complaint “if you feel a health care provider or government agency coerced or discriminated against you (or someone else) unlawfully”.

Both Planned Parenthood (abortion) and Compassion and Choices (assisted suicide) loudly condemned this.

Lawsuits were quickly filed by groups like Americans United for Separation of Church and State and the Center for Reproductive Rights, delaying implementation of the Final Conscience Rule until at least late November. The first lawsuit was filed by San Francisco within hours of the announcement of the Rule.

NOW STATES ARE GETTING INVOLVED

In 2020, the Medical Conscience Rights Initiative (MCRI)  was launched by the Religious Freedom Institute, Alliance Defending Freedom and the Christ Medicus Foundation to promote legislation on the state level “to protect America’s healthcare providers from mandates to perform voluntary procedures in violation of their conscience (e.g., abortion, physician assisted suicide, gender transition surgery, etc.).”

Now five states-Arkansas, Ohio, South Carolina, Florida and now Montana– have enacted versions of this model legislation while “similar efforts are ongoing in multiple other states.”

CONCLUSION

Conscience rights are a necessity, especially since as Dr. Donna Harrison, director of the American Association of Pro-Life Obstetricians and Gynecologists (AAPLOG) makes the crucial point that:

 “Those who oppose the HHS Conscience Rule demonstrate their clear intention to squeeze out of the medical profession any doctor who still abides by the Hippocratic Oath, and to squelch any opposition to forcing doctors to kill human beings at the beginning and end of life.” (Emphasis added)

Disturbingly, as a 2021 paper “Teaching the Holocaust in Nursing Schools: The Perspective of the Victims and Survivors” points out: “the majority of nursing and medical schools do not include Holocaust and genocide studies in their curriculum“, unlike years ago when it was included as an essential part of medical ethics education.

The results are frightening, as I wrote in a 2019 blog “How Could This Happen? Ohio Doctor Accused of Murder in 25 Patient Overdose Deaths”. The doctor was eventually acquitted of murder after “Husel’s defense team, led by high-profile attorney Jose Baez, argued that no maximum doses of fentanyl are considered illegal under state law and that his client was trying to give comfort care to people who were dying or near death.” (Emphasis added)

 Today, both the American Medical Association and American Nurses Association champion “abortion rights” and have dropped their total opposition to medically assisted suicide.

Without conscience rights and whistleblower protections, our health care system can not only become unethical but also downright dangerous to both healthcare providers and patients.

AN INCREDIBLE STORY OF RECOVERY AND HOPE

nancyvalko brain injury, courage, disability, faith, futility, inspiration, medical, medical ethics, mental health, pro-life, vegetative state

I was watching ESPN’s Sports Center show with my husband when I commented on the smart female sportscaster Victoria Arlen who held her own with the male sportscasters. Then my husband told me she had an amazing story and I had to check it out for myself.

A LIFE-CHANGING ILLNESS

When she was 11 in 2006, Victoria Arlen developed two rare conditions: Transverse Myelitis (“a neurological disorder caused by inflammation of the spinal cord”) and Acute Disseminated Encephalomyelitis (” a neurological, immune-mediated disorder in which widespread inflammation of the central nervous system (brain and spinal cord) damages tissue known as white matter”) . 

According to her website, she quickly lost the ability to speak, eat, walk and move and slipped into a “vegetative state”. The doctors thought she was a lost cause. “Victoria spent nearly four years “locked” inside her own body completely aware of what was going on just unable to move or communicate.”

But she didn’t give up.

Amazingly, she was able to improve and according to the May 10, 2023 issue of People magazine:

“After winning gold at the 2012 Paralympic Games and getting a job as one of the youngest reporters at ESPN, she spent year in physical therapy relearning to walk (something doctors thought she’d never be able to do)— and then dance, placing fifth on Dancing with the Stars in 2017.

By all accounts, Arlen had seemed to triumph over her tragedy.

THE RELAPSE

But on March 17, 2022, Victoria had a relapse-her worst fear.

But because her relapse of just the transverse myelitis was recognized early, doctors were able to treat her and prevent lasting paralysis. But her recovery was “grueling”, learning to sit up and take steps again with daily rehab.

She said ” I needed to prove to myself that I was going to be okay” and “”I keep believing in miracles I choose to have faith that I’m going to be okay, and I choose to have hope that things are going to continue to get better,

She continued to have nerve pain but is now back at ESPN’s Sports Center and says, ” “I’ve been given another second chance, and I make a conscious effort now more than ever to appreciate every single moment,” she says. “Because in the blink of an eye, it can be taken away.”

Her webpage reveals that:

“Victoria is also the Founder and Co- Chair of Victoria’s Victory Foundation, a nonprofit that assists those with mobility related disabilities. Since 2017, VVF over provided half a million dollars in scholarship funds to those who need it most.

Victoria’s book titled Locked In hit stores worldwide in August of 2018 as well as her 30 for 30 titled Locked In, that Victoria narrated and produced. Victoria continues to share her story on various speaking tours throughout the world.”

CONCLUSION

Ms. Arlen ends her story with an inspirational message that should touch all of us-especially healthcare providers:

“Heroes in real life don’t wear masks and capes. Sometimes they don’t stand out at all. But real heroes can save a life or many lives just by answering the call in their heart. In the darkest period of my life, when I couldn’t help myself, my heroes were there. … Sometimes we just need someone to lean over and whisper, ‘You can do it!‘ (Emphasis added)

Journal of Neurotrauma Paper on Withdrawal of Treatment in Severe Traumatic Brain Injury

nancyvalko advance directives, brain injury, disability, futility, Living wills, medical ethics, pro-life, Simon's Law, ventilators/life support

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with 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, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us 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 ‘Mike” was comatose!

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients later woke up.

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 some consciousness with verbal and physical stimulation. I have 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 consciousness. 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

Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma

However, there is now a new article in the Journal of Neurotrauma titled “Prognostication and Goals of Care Decisions in Severe Traumatic Brain Injury: A Survey of The Seattle International Severe Traumatic Brain Injury Consensus Conference Working Group” about a panel of 42 physicians and surgeons recognized for their expertise of traumatic brain injury that states:

“Overall, panelists felt that it would be beneficial for physicians to improve consensus on what constitutes an acceptable neurological outcome and what chance of achieving that outcome is acceptable. “Over 50% of panelists felt that if it was certain to be enduring, a vegetative state or lower severe disability would justify a withdrawal of care decision.” (Emphasis added)

In addition:

“92.7% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes a good or bad neurological outcome (Fig. 3A). Similarly, 95.1% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes an acceptable chance of achieving a good neurological outcome.” (All emphasis added)

RESPONSIBILITY FOR WITHDRAWAL OF CARE DECISIONS

As the article states:

“Although many would report that decision making following devastating TBI is the responsibility of well-informed substitute decision makers familiar with the wishes of a patient,12,25 our survey confirms that the relationship between clinicians and decision makers is complex. As our panelists recognize the marked influence that physicians have on aggressiveness of care, it would seem that in many cases physicians are actually the decision makers and that substitute decision makers are limited by the perceptions (communicated to them. (Emphasis added)

CONCLUSION

Legally, the issue of who makes the decision when treatment or care can be withdrawn as “medically futile” varies.

Often ethics committees are called in to review a situation. Sometimes, as in the Simon Crosier case, families can be unaware that treatment is being withdrawn.

For years, Texas has had a controversial “futile care” law that allows treatment to be withdrawn with the patient or family having only 10 days to find another facility willing to provide care. This was challenged in court and was successful in the Baby Tinslee Lewis’ case . Tinslee eventually went home.

Now a new bill H B3162 has passed in the Texas legislature and is headed to the Governor to be signed and Texas Right to Life states that:

“HB 3162 modifies several aspects of the Texas Advance Directives Act, including the 10-Day Rule. The bill by Representative Klick offers more protections to patients, such as:

  • Requiring the hospital to perform a procedure necessary to facilitate a transfer before the countdown may begin, 
  • Specifying that the process cannot be imposed on competent patients, 
  • Prohibiting decisions from being based on perceived “quality of life” judgments, and 
  • Giving the family more notice of the ethics committee meeting and more days to secure a transfer.”

Every state should consider having such protections for vulnerable patients and their families.

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.

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..