AN INCREDIBLE STORY OF RECOVERY AND HOPE

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)

The National Association of Pro-life Nurses Opposes “The Right to Reproductive Freedom with Protections for Health and Safety” Amendment to the Ohio Constitution

The National Association of Pro-Life Nurses supports Ohio Right to Life in opposing “The Right to Reproductive Freedom with Protections for Health and Safety” amendment to the Ohio Constitution. Here are some of our objections:

  1. The amendment states that: “Every individual  has a right to make and carry out one’s own reproductive decisions,” the amendment says. If approved, the state couldn’t unduly “burden” this right.   According to FindLaw . : “Minors in Ohio generally cannot provide consent to most medical procedures and must seek the consent of a parent or legal guardian instead. But the state also allows so-called “mature minors” to consent   to such procedures without the consent of a parent or guardian. “Mature minors” must be at least 15 years of age or older, and they must be able to show a doctor that they have enough understanding to make such decisions on their own.” (All emphasis added) It is vitally important that parents be informed about such abortions procedures before they occur, especially with teenagers who may be pressured to get rid of the baby before their parents find out. Not only can parents help their teens make a life-saving decision like adoption but also be there to help if any physical or emotional complications result from the abortion.
  2. The amendment states: “Abortion may be prohibited after fetal viability,” except if a physician  believes it’s necessary “to protect the pregnant patient’s life or health.” (Emphasis added)  We agree with AAPLOG (American Association of Pro-life Obstetrician and Gynecologists) that: “The amendment would legalize abortion through all nine months of pregnancy by allowing post-viability abortion for broadly defined ‘health reasons, which have been long been understood legally to include any and all factors supposedly affecting health, including socioeconomic reasons. Its broad language forbidding ‘direct or indirect’ restriction on abortion places at risk such basic safeguards as protections against coerced abortion parental consent, conscience rights for pro-life clinicians, current health and safety regulations for abortion clinics, and counseling to support a woman through her pregnancy-all of which have been demonstrated to help women” and” this proposed amendment also opens the door for the legal targeting of pregnancy resource centers, which serve thousands of Ohio women with material, medical and emotional support every year.” (Emphasis added) This makes an abortion right more extreme than what prevailed under Roe v. Wade.
  3. Conscience rights for healthcare providers are at risk. In a July 31, 2023 USA Today article “‘Conscience’ bills let medical providers opt out of providing a wide range of care” states cites a March 2020 article in the American Medical Association’s Journal of Ethics that said, “Clinicians who object to providing care on the basis of ‘conscience’ have never been more robustly protected than today. Legal remedies for patients who receive inadequate care as a result have shrunk significantly”. Many of the most sweeping bills are backed by organizations that have promote the “conscience” agenda nationwide, such as the Christian Medical Association, Catholic Medical Association, and National Association of Pro-Life Nurses. Other groups launched a joint effort in 2020 with the explicit purpose of advancing state legislation that makes it easier for health care providers to refuse to perform a wide range of procedures, including abortion and types of gender-affirming care.” And that “Opponents such as the American Civil Liberties Union, Planned Parenthood, and the Human Rights Campaign have been vocal opponents of this trend, criticizing it as a backdoor way to restrict the rights of women, LGBTQ+ community members, and other individuals. (Emphasis added)

CONCLUSION

We urge all people of good will to join us in working to protect and help vulnerable people as well as ethical healthcare providers.

The National Association of Pro-Life Nurses: We Care About All Lives

Recently, I was contacted by a college political science professor who is writing a paper about “pro-choice and pro-life viewpoints” and she wanted to know more about the National Association of Pro-Life Nurses.

I was delighted and we had a long conversation about what motivates pro-life people-and especially nurses.

I told her about our National Association of Pro-life Nurses and the why and how we do what we do. Our motto since the organization began in the 1970s is “Take my hand, not my life”.

The professor seemed surprised that the pro-life movement is founded on caring rather than the common misperception of politics and political power.

Instead, as I told her, the pro-life movement is about helping people in crisis situations from conception to death and educating people about upholding the excellent, life-giving ethics and laws that protect all lives from conception to natural death.

It is also not about being judgmental but rather about truly caring and offering help to desperate people in crisis situations and the people around them before-or even after- a person has chosen abortion or is considering medically assisted suicide. (see “Pro-Life and Other Resources for Help and Information to Protect Human Life”)

And this works!

Many people are surprised when they find out that even NBC News admits that:

More than 2,500 crisis pregnancy centers operate in the country, outnumbering abortion clinics nearly 3 to 1 by some estimates. Critics, as well as supporters, have said the number of women seeking support at them has grown quickly in the 11 months since federal abortion rights were overturned, which resulted in the closing of abortion clinics in dozens of states. ” (Emphasis added)

And as pro-life nurses who care for everyone-not just in hospitals and crisis pregnancy centers, but also in prisons, at home in poor and sometimes dangerous areas, in homeless situations, etc., we are truly interested in helping instead of judging people.

Our message is “We Care” and I have yet to meet a pro-life nurse who isn’t also involved in some sort of volunteer work.

CONCLUSION

In my 50+ years as a nurse, I have worked in burn units, medical and surgical units, burn units, dialysis, intensive care, oncology (cancer), hospice and home health. I have also cared for relatives and friends with terminal illnesses, dementia, critical heart defects, cancer, disabilities, severe psychosis, suicide, drug addiction, teen pregnancy, etc. but never once was I tempted to end a life.

Just as doctors used to take the Hippocratic Oath that said ” I will not give a lethal drug to anyone if I am asked, nor
will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.”, new nurses used to take the Nightingale Pledge that said ” I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug.”

Unfortunately, today these oaths are little used or changed to allow for formerly illegal practices and this has harmed both professions and to the detriment of healthcare and public trust.

I have also been a newspaper reporter and writer for several publications but  in 2015, I started my blog “A Nurse’s Perspective on Life, Healthcare and Ethics” to report on the many healthcare ethics controversies and I often use my personal and professional stories to show resources and how to help people in difficult circumstances.

Most of all, I have seen the power of “I Care/We Care” to help people and their families at some of the most desperate times of their lives and I am proud to be a member of the National Association of Pro-life Nurses.

Please join us and/or follow NAPN on Facebook.

Pro-Life and Other Resources for Help and Information to Protect Human Life

There are many pro-life organizations that can help you or someone you are trying to help find information, referrals and/or other help with crucial decisions about vulnerable lives from conception to death. Here are many of them.

I am personally on the board of two of these organizations: HALO (Healthcare Advocacy and Leadership Organization) and National Association of Pro-life Nurses (NAPN) and have personally worked with many of the organizations on this list.

NATIONAL PRO-LIFE ORGANIZATIONS

The National Right to Life (NRLC) was formed in 1968 and is the largest and oldest pro-life organization in the United States. The mission of NRLC is “to protect and defend the most fundamental right of humankind, the right to life of every innocent human being from the beginning of life to natural death.” They have over 3,000 local chapters, which can be found in all 50 states.

American United for Life -“We strive for the day when all are welcomed throughout life and protected in law.”

American Life League-“Building a Culture of Life”

Charlotte Lozier Institute-“America’s #1 source for science, data, and medical research on the value of human life.”

Students for Life– “Impacting Campuses & Communities”

PRO-LIFE SITE TO HELP BOTH PATIENTS AND FAMILIES NAVIGATE THE HEALTHCARE SYSTEM

HALO (Healthcare Advocacy and Leadership Organization) -“Defending the lives and safety of persons facing the grave consequences of healthcare rationing and unethical practices, especially those at risk of euthanasia and assisted suicide.”

Please visit the Resources section that includes crucial information about “living wills”, ventilators, etc. and “is designed to help YOU navigate the complicated and sometimes perilous healthcare system. “

PRENANCY RESOURCE CENTERS

Carenet-“Acknowledging that every human life begins at conception and is worthy of protection, Care Net offers compassion, hope, and help to anyone considering abortion by presenting them with realistic alternatives and Christ-centered support through our life-affirming network of pregnancy centers, churches, organizations, and individuals. “

Birthright-“Birthright is a non-profit charitable organization that has been providing love and support for over 50 years to women facing unplanned pregnancies” and offers “free non-judgmental support 24/7

Abortion Pill Reversal-“Have you taken the first dose of the abortion pill? Do you regret your decision and wish you could reverse the effects of the abortion pill? We’re here for you!” ” Call our 24/7 Helpline: 1-877-558-0333″

Perinatal Hospice & Palliative Care-Continuing Your Pregnancy -“When Your Baby’s Life Is Expected to Be Brief “

PRO-LIFE MEDICAL AND NURSING ORGANIZATIONS

American Association of Pro-Life Obstetricians and Gynecologists  ~   Its membership is 85% OB/GYNS, about 15% Family Medicine, ER and other physicians who deal with reproductive health. It includes midwives, nurse practitioners, etc. who also deal with reproductive health, including pregnancy care center organizations. Membership helps to keep them abreast of what is happening in reproductive health.

American College of Pediatricians  –  “Pediatricians and Family Medicine physicians who deal in pediatrics, as well as other medical professionals who work in pediatrics.”

Association of American Physicians and Surgeons  -“Physicians of all specialties.”

Christian Medical and Dental Society  -“Christian physicians of any denomination, and Advanced Practice Clinicians of all specialties.”

National Association of Pro-life Nurses (NAPN)-We care for all lives from conception to the end of life. I encourage all nurses to join and every pro-life person to also visit our Facebook page for more news.

PRO-LIFE GROUPS FOR HELP AFTER ABORTION

Project Rachel – “It’s normal to grieve a pregnancy loss, including the loss of a child by abortion. It can form a hole in one’s heart, a hole so deep that sometimes it seems nothing can fill the emptiness. You are not alone.”

Project Joseph (St. Louis)-“Project Joseph – “a men’s only program through our Abortion Healing Ministry, provides healing and hope to men wounded by abortion.”      

 Elliott Institute was founded in 1988 by Dr. David Reardon, who conducts scientific, evidence-based research on abortion’s effects on women, men, families, and societies. They invest in research, education, and outreach. They are also dedicated to advocacy for women traumatized by abortion and how to provide healing support.

In addition, the Elliott Institute raises awareness about the injustices of coerced and forced abortions, referring to abortion as the “unchoice.”

HELP FOR PEOPLE CONSIDERING SUICIDE

988 Suicide & Crisis Lifeline-“The 988 Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States. We’re committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness.”

PRO-LIFE LEGAL GROUPS:

Center Against Forced Abortions – The Justice Foundation
The Justice Foundation’s “Center Against Forced Abortions” or “CAFA”- “was created to provide educational resources to empower women who are being forced, unduly pressured, or coerced into an unwanted abortion.”

Life Legal Defense Foundation-“Our mission is to give innocent and helpless human beings of any age, particularly babies in the womb, a trained and committed defense against the threat of death, and to support their advocates in the nation’s courtrooms.”

The Alliance Defending Freedom– “ADF is the world’s largest legal organization committed to protecting religious freedom, free speech, the sanctity of life, marriage and family, and parental rights.”

Thomas More Society – “For decades, we’ve passionately championed the causes of everyday individuals confronting remarkable injustices, from the sidewalks and town squares to the Supreme Court.”

American Center for Law and Justice-“Led by Chief Counsel Jay Sekulow, the ACLJ focuses on constitutional and human rights law worldwide. Based in Washington, D.C., with affiliated offices in Israel, Russia, Kenya, France, Pakistan, and Zimbabwe, the ACLJ is pro-life and dedicated to the ideal that religious freedom and freedom of speech are inalienable, God-given rights for all people. The ACLJ engages legal, legislative, and cultural issues by implementing an effective strategy of advocacy, education, and litigation that includes representing clients before the Supreme Court of the United States and international tribunals around the globe.”

DISABILITY GROUPS (some not formally against abortion)

The National Down Syndrome Congress on abortion-“National Down Syndrome Congress (NDSC) has long held that abortion for the sole reason that a fetus has Down syndrome borders on eugenics...We believe a better approach is to require healthcare providers to provide their patients with accurate, up-to-date information about the
realities of having Down syndrome in contemporary America; and, to promote full, meaningful inclusion of all people – with and without disabilities – in every aspect of society.” (Emphasis added)

National Down Syndrome Adoption Network-“Our mission is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

Prenatal Partners for Life-“We are a group of concerned parents, medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents with a special needs child.”

Simon’s Law -“Simon’s Law says, “NO! No child’s medical chart should have a do not resuscitate order (DNR) and/or the withholding of life sustaining treatments without parental knowledge or consent…No child should be denied life sustaining treatment withheld by a medical professional or insurance provider. Our intent is to make each state a “Simon State” by stopping secret do not resuscitate (DNR) orders!”

Not dead Yet -“is “a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.” (Emphasis added)

The Frightening Deterioration of Professional Medical Ethics Regarding Abortion and Assisted Suicide at the AMA and ANA

ABORTION AND THE AMERICAN MEDICAL ASSOCIATION

When I went to nursing school in 1967, abortion was illegal in the US and so-called “back alley” abortions were universally condemned.

According to a Hopkins Bloomberg Public Health article titled “A Brief History of Abortion in the U.S.”:

“America’s first anti-abortion movement wasn’t driven primarily by moral or religious concerns like it is today. Instead, abortion’s first major foe in the U.S. was physicians on a mission to regulate medicine.” and “Most providers were midwives, many of whom made a good living selling abortifacient plants.” (Emphasis added)

The American Medical Association was established in 1847 and the “AMA was keen to be taken seriously as a gatekeeper of the medical profession, and abortion services made midwives and other irregular practitioners—so-called quacks—an easy target.”

“In 1857, the AMA took aim at unregulated abortion providers with a letter-writing campaign pushing state lawmakers to ban the practice. To make their case, they asserted that there was a medical consensus that life begins at conception, rather than at quickening.

The campaign succeeded. At least 40 anti-abortion laws went on the books between 1860 and 1880.” (All emphasis added)

And abortion eventually became illegal throughout the US until the 1973 Roe v. Wade Supreme Court decision that legalized most abortions in the US.

FAST FORWARD TO TODAY

In a June 13, 2023 article on Medpage titled “AMA Delegates Make Short Work of Proposals on Abortion” at AMA Delegates Make Short Work of Proposals on Abortion | MedPage Today, Dr Thomas Eppes Jr, MD from Virginia introduced a resolution that asked the AMA to:

 “advocate for availability of the highest standard of neonatal care to [an] aborted fetus born alive at a gestational age of viability,” which occurs at approximately 22 weeks’ gestation. “This position is not to argue the woman’s right to choose … The decision to abort is still between the patient and the physician,” Eppes said. “It does not imply the woman’s responsibility for the fetal life, but this resolution places the burden of care on the physician, who now has to care for two patients once the fetus is viable.” (Emphasis added)

The resolution was opposed by Kavita Arora, MD, of Chapel Hill, North Carolina, a delegate from the American College of Obstetricians and Gynecologists (ACOG) who was speaking on behalf of the ACOG section council and the Specialty and Service societies who said that:

“Our policy should be based on science, it should be based on fact, and it should be based on the best available evidence that honors and upholds the value of the patient-physician relationship and the nuance and complexity of medical care,” and that “It is not a one-size-fits-all approach and should not be based on misinformation or disinformation. I strongly urge you to oppose.” (Emphasis added)

The Dr. Eppes’ resolution was voted down 476-106 and the council moved on to reimbursement matters.

ASSISTED SUICIDE AND THE AMA

A May 1, 2023, article by Dallas R. Lawry, DNP, FNP-C, AOCNP® from the University of California, San Diego in the Journal of the Advanced Practitioner in Oncology titled “Rethinking Medical Aid in Dying: What Does It Mean to ‘Do No Harm?’” at Rethinking Medical Aid in Dying: What Does It Mean to ‘Do No Harm?’ – PMC (nih.gov) reveals that:

“Until 2019, the American Medical Association (AMA) maintained that MAID (medical aid in dying aka assisted suicide) was incompatible with their code of ethics and a physician’s responsibility to heal (AMA, 2022)“.

 But now, the AMA Medical Code of Ethics now has two provisions that support both positions on MAID, including: “Physicians who participate in MAID are adhering to their professional, ethical obligations as are physicians who decline to participate” (AMA, 20192022Compassion & Choices, 2022) (Emphasis added)

ABORTION AND THE ANA (American Nurses Association)

When I graduated nursing school in 1969, abortion was still a criminal act and no one expected the 1973 Roe v. Wade decision legalizing most abortions.

In 2022, the ANA publish a position statement fully supporting “respect for a person’s reproductive choices; sex education; access to contraception; access to abortion care; ensuring equity in reproductive health, access, and care delivery; and matters of conscience for nurses in SRH (sexual and reproductive health)”.

So it was not surprising that several national nursing associations condemned the US Supreme Court’s Dobbs v. Jackson Women’s Health Organization decision overturning the 1973 Roe v Wade decision and returning regulating abortion to the states and the ANA wrote in its  official statement that:

“the “U.S. Supreme Court’s decision to overturn Roe vs. Wade is a serious setback for reproductive health and human rights” and that “”(n)urses have an ethical obligation to safeguard the right to privacy for individuals, families, and communities, allowing for decision making that is based on full information without coercion.” (All emphasis added)

ASSISTED SUICIDE AND THE ANA

In 1995, the American Nurses Association stated:

“The American Nurses Association (ANA) believes that the nurse should not participate in assisted suicide. Such an act is in violation of the Code for Nurses with Interpretive Statements (Code for Nurses) and the ethical traditions of the profession. “ (Emphasis added)

In 2017, the ANA revised in position on VSED (voluntary stopping of eating and drinking) “with the intention of hastening death”.

In 2019, the American Nurses Association revised their position on assisted suicide titled “The Nurse’s Role When a Patient Requests Medical Aid in Dying”, stating that nurses:

“• Remain objective when discussing end-of-life options with patients who are exploring medical aid in dying.

• Have an ethical duty to be knowledgeable about this evolving issue.

Be aware of their personal values regarding medical aid in dying and how these values might affect the patient-nurse relationship.

• Have the right to conscientiously object to being involved in the aid in dying process. (But “Conscience-based refusals to participate exclude personal preference, prejudice, bias, convenience, or arbitrariness”)

Never “abandon or refuse to provide comfort and safety measures to the patient” who has chosen medical aid in dying (Ersek, 2004, p. 55). Nurses who work in jurisdictions where medical aid in dying is legal have an obligation to inform their employers that they would predictively exercise a conscience-based objection so that appropriate assignments could be made” (All emphasis added)

But while the ANA is states that “It is a strict legal and ethical prohibition that a nurse may not administer the medication that causes the patient’s death“, it is silent when some states with assisted suicide laws like Washington state’s where Governor Jay Inslee signed a new expansion to the law in April 2023 to “allow physician assistants and advanced nurse practitioners to be one of the medical providers who sign off on the procedure”, “eliminates a two-day waiting period for prescribing the drugs” and “allow the necessary drugs to be mailed to patients instead of picked up in person”. (Emphasis added) https://www.axios.com/2023/04/24/washington-death-with-dignity-law

Most recently on June 2, 2023 in Hawaii, Gov. Josh Green (D), a physician, signed a bill that “allows qualified advanced practice registered nurses (APRNs) the authority as attending and consulting healthcare providers to evaluate and confirm a patient’s eligibility and to prescribe medical aid in dying medications. (Emphasis added)

CONCLUSION

Because there are now many state and national medical professional organizations that support assisted suicide, , abortion and other problematic ethical issues, the discouraging effect on idealistic people considering or remaining in a health care career may be devastating to our most vulnerable people and indeed to our healthcare system itself.

But, as I will write in a future blog, there is hope, alternatives and resources that everyone needs to know to protect themselves and their loved ones as well as other vulnerable lives.

What are QALYS and Why Should We Care?

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Planned Parenthood Sues Kansas to Challenge a New State Law Requiring Abortion Reversal Information to be Provided Before Abortion

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Statement of the National Association Of Pro-Life Nurses against the Potential Revision of the Uniform Determination of Death Act (UDDA)

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

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?

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.