ventilators/life support

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They found that of the survivors who did not have life-sustaining treatment withdrawn, “more than 40% recovered at least some independence.”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

We Will Not Comply

nancyvalko aging, Alzheimer's, assisted suicide, conscience rights, culture, dementia, disability, education, end-of-life, euthanasia, law, pro-life, suicide, ventilators/life support

In an excellent article in the June 28, 2024 Christian Post Reporter titled “‘Despair over hope’: Pro-life nurses group ‘will not comply’ with Delaware’s assisted suicide bill”,

As reporter Samantha Kamman reported:

“A national coalition of pro-life nurses (NAPN, the National Association of Prolife Nurses) says they “will not comply” with Delaware’s assisted suicide bill that passed in the Senate Tuesday as the state’s lone Catholic diocese is calling on people of faith to urge Democratic Gov. John Carney to veto the legislation. “

Ms Kamman explains that:

“H.B. 140 passed in the Senate with an 11-10 vote and will become law unless Carney vetoes it. Under the proposed law, adult patients who are “terminally ill” or have received the prognosis that they have six months or less to live can request or self-administer drugs to hasten their deaths.

Both the individual’s attending physician or attending advanced practice registered nurse (APRN) and a consulting physician or APRN must agree on the patient’s condition and decision-making capacity. Two waiting periods must pass before the patient can receive the drugs to end their life, and medical professionals who prescribe the medication must provide the patient the opportunity to rescind the request to kill themselves. 

The law would also grant immunity to medical professionals who offer life-ending drugs to patients, so long as they are “acting in good faith and in accordance with generally accepted health-care standards under this Act.” As the bill states, those “acting with negligence, recklessness, or intentional misconduct do not have criminal or civil immunity.” (All emphasis added)

THE RESPONSE

The National Association of Pro-Life Nurses, which has advocated against assisted suicide legislation for over 30 years, condemned the bill, calling it a “moral catastrophe that corrupts the very soul of healthcare.”

Marie Ashby, NAPN’s executive director, argued in a statement to The Christian Post that the bill “preys” on “the desperate and devalues the disadvantaged,” adding that it offers “poison as a perverse form of mercy” to people society deems “inconvenient.”

“Legitimate healthcare heals; it doesn’t kill,” Ashby added. “This law perverts our profession’s sacred duty, turning nurses from guardians of life into agents of death. We will not be silent. We will not comply.”

NAPN President Dorothy Kane contends, “Delaware has chosen death over dignity, despair over hope.” (All emphasis added)

CONCLUSION-two personal stories

My Daughter Marie Killed Herself Using an Assisted Suicide Technique

In 2009, I lost a beautiful, physically well 30-year-old daughter, Marie, to suicide after a 16-year battle with substance abuse and other issues. Her suicide was like an atom bomb dropped on our family, friends and even her therapists.

Despite all of our efforts to save her, my Marie told me that she learned how to kill herself from visiting suicide/assisted suicide websites and reading Derek Humphry’s book Final Exit. The medical examiner called Marie’s suicide technique “textbook final exit” but her death was neither dignified nor peaceful.

Marie was not mere collateral damage in the controversy over physician-assisted suicide. She was a victim of the physician-assisted suicide movement, seduced by the rhetoric of a painless exit from what she believed was a hopeless life of suffering.

Adding to our family’s pain, at least two people close to Marie became suicidal not long after her suicide. Luckily, these two young people received help and were saved, but suicide contagion, better known as “copycat suicide”, is a well-documented phenomenon. Often media coverage or publicity around one death encourages other vulnerable people to commit suicide in the same way.

The Effect on our Healthcare System

Think the assisted suicide won’t affect you or our healthcare system?

Think again.

As I wrote in my 2018 blog “They are Lying to Us“:

“Several years after Oregon’s law was passed, I was threatened with termination from my job as an intensive care unit nurse after I refused to participate in a deliberate overdose of morphine that neither the patient nor his family requested after an older patient experienced a crisis after a routine surgery.

The patient had improved but did not wake up within 24 hours after sedatives used with a ventilator were stopped. It was assumed that severe brain damage had occurred and doctors recommended removing the ventilator and letting the patient die.

However when the ventilator was removed, the patient unexpectedly continued to breathe even without oxygen support. A morphine drip was started and rapidly increased but the patient continued to breathe.

When I refused to participate in this, I found no support in my hospital’s “chain of command” so I basically stopped the morphine drip myself, technically following the order to “titrate morphine for comfort, no limit.”

The patient eventually died (without food or other treatment) after I left but ironically, a later autopsy requested by the family showed no lethal condition or brain injury as suspected.

The physician who authorized the morphine demanded that I be fired.

I was spared because I argued that I followed the order to “titrate morphine for comfort” by stopping the morphine when he was comfortable!

The family never knew the real story.

We need to reject legalized healthcare provider assisted suicide not only for seriously ill, elderly and disabled but also for ourselves, our loved ones and the integrity of our medical system!

“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.

Great News-Utah is Twelfth State to Pass Simon’s Law!

nancyvalko conscience rights, CPR, disability, education, law, medical ethics, Simon's Law, ventilators/life support

For several years, Sheryl Crozier and I worked to get a law passed in Missouri protecting our children with disabilities from medical discrimination such as DNR (do not resuscitate) orders, withholding of basic treatment, etc. without our knowledge or consent. (See my 2016 blog “My testimony for Simon’s Law”).

That law was finally passed in Missouri in 2019 and in February 2024, Simon’s Law was introduced in Congress.

The push for states to adopt a Simon’s Law has continued and Simon’s Law has now passed in 12 states.

Here is Sheryl’s post on the latest Utah law:

“FOR IMMEDIATE RELEASE: April 25, 2024

Sheryl Crosier

Simon’s Law

(314) 443-3770

Sheryl@SimonsLaw.org

HB-0200 Passes Utah Legislature

“Designating a Child as DNR Without Parental Consent” is Unprofessional Conduct

Salt Lake City, UT: Simon’s Law today announced the passage of HB-0200, concerning life-sustaining procedures, which is scheduled to go into effect on May 1st.  The new amendment modifies Titles 58 and 75, providing much needed parental rights protection during the process of life-sustaining medical treatment decisions concerning a minor.

Scott and Sheryl Crosier founded the non-profit after the death of their son, Simon, when they discovered a Do-Not-Resuscitate (DNR) order was placed in his medical chart without their knowledge or consent.

“No child’s medical chart should have a DNR order or the withholding of life-sustaining treatment without parental knowledge or consent,” said Simon’s Law CEO and co-founder, Sheryl Crosier.  The Crosiers soon discovered a growing trend in hidden DNR orders without parental awareness or permission and felt the call to make a difference.

The new Utah amendment protects parents’ rights to have the final say in their child’s medical treatment, and is presently the 12th state to either pass a version of Simon’s Law, or be identified as already having similar legislation on the books.

“I can’t bring my son, Simon, back,” said Crosier, “but I want to make sure that no parent or guardian of a minor child is stripped of their parental rights in the determination of their child’s life or death.”

Features and benefits of HB-0200 include:

  • Makes designating a child as do not resuscitate without parental consent unprofessional conduct for physicians, advance practice registered nurses, and physicians assistants.
    §58-31b-502(1)(s), 58-67-502(1)(h), 58-68-502(1)(h), 58-70a-503(1)(h)
  • Makes technical and conforming changes related to orders for life sustaining treatment.
    §75-2a-103(17), §75-2a-106(3)(b)(iii), §75-2a-106(4), §75-2a-106(8)
  • Protects parental rights to have the final say in do not resuscitate orders and orders for life sustaining treatment for their minor child. (Emphasis added)

For more information on HB-0200, visit https://simonslaw.org/state-by-state/.  

About Simon’s Law: We are a national network of families and professionals influencing legislation to preserve parental rights in Do Not Resuscitate (DNR) determinations.  In addition to influencing or identifying such legislation across the nation, we have also introduced The Simon Crosier Act (HR-6344) in Congress to amend titles XVIII and XIX of the Social Security Act pertaining to the Medicare and Medicaid codes regarding DNRs on unemancipated minors.”

CONCLUSION

While it is wonderful that this protective law has been passed, there is a larger question to be asked: Shouldn’t these protections for children and their families have already been part of medical and nursing ethics education?

I remember when it used to be!

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.

Catholic Hospital in Canada Under Fire for Naming Euthanasia Provider as Palliative Care Director-Why Should We Care?

nancyvalko AMA, assisted suicide, Compassion & Choices, conscience rights, dementia, disability, economics, education, end-of-life, euthanasia, food and water, futility, hospice, law, media, medical ethics, mental health, nursing, palliative care, terminal/palliative sedation, ventilators/life support, VSED

In a shocking Sep 16, 2023 article from the Catholic News Agency titled Catholic hospital under fire for naming euthanasia provider as palliative care director | Catholic News Agency, Dr. Danielle Kain, a palliative care specialist who is associate professor and division co-chair of palliative medicine at Queen’s University, was appointed to the directorship of palliative care at Providence Hospital in Kingston, Ontario in Canada despite being “is both a staunch proponent and practitioner of euthanasia.”

Providence Hospital is one of 22 health care institutions in Ontario under the sponsorship of Catholic Health Sponsors of Ontario (CHSO). Canada has one of the most expansive assisted suicide laws in the world and is now considering adding people whose sole medical condition is mental illness. (Emphasis added)

The article also states that “Kain has argued that all publicly funded institutions, including Catholic hospitals, should be compelled to offer MAiD (Medical Aid in Dying) She has also expressed support for the Effective Referral Policy: doctors who have conscientious objections to euthanasia must refer patients to MAiD-offering doctors. In a 2016 Twitter post, Kain wrote: “Making an effective referral is not an infringement of rights.” (All emphasis added)

And

“A variety of professional associations of Canadian Catholic health care providers, including the Canadian Federation of Catholic Physicians, have made appeals to both the CHSO and the local ordinary, Archbishop Michael Mulhall, to intervene….but “The archbishop’s office did not respond before publication to a request for comment.” (Emphasis added)

RECENT HISTORY

In 2019, The National Association of Pro-life Nurses joined the Euthanasia Prevention Coalition USA and other organizations in opposing the  Palliative Care and Hospice Education and Training Act (2019) H.R. 647, S.2080 (known as PCHETA) introduced in the US Congress.

We stated that:

“As nurses, we strive to care for our seriously ill, disabled and terminally ill patients with compassion and the highest ethical standards. We applaud the medical innovations and supportive care options that can help our patients attain the highest quality of life possible.

However now many of us nurses are now seeing unethical practices such as assisted suicide, terminal sedation (with withdrawal/withholding of food, water and critical medicines), voluntary stopping of eating, drinking and even spoon feeding, etc. used to cause or hasten death but often called palliative, “comfort” or routine hospice care for such patients.

Such practices are already  considered acceptable by many influential hospice and palliative care doctors like Dr. Timothy Quill, a board-certified palliative care physician, 2012 president of the American Academy of Hospice and Palliative Medicine and promoter of legalizing physician-assisted suicide and terminal sedation.

It is also disturbing the Compassion and Choice, the largest and best funded organization promoting assisted suicide and other death decisions,  has a mission statement stating:

“We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.”

and a “Federal Policy Agenda / 2016 & Beyond”  goal to:

“Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….” (All emphasis added)

We believe that the Palliative Care and Hospice Education and Training Act (2019) will allow federal funding to teach and institutionalize such unethical practices without sufficient oversight, safeguards or penalties.”

NOW A NEW PCHETA BILL HAS NOW BEEN PROPOSED

The 2019 PCHETA did not pass in Congress but now a new and almost identical version US SB2243 has just been has been introduced into the US Senate.

A new addition is included to “develop and implement a strategy to be applied across the institutes and centers of the National Institutes of Health to expand and intensify national research programs in palliative care in order to address the quality of care and quality of life for the rapidly growing population of patients in the United States with serious or life-threatening illnesses.”(Emphasis added)

A letter of support for the new 2023 PCHETA bill was signed by a multitude of groups including the Alzheimer’s Association, American College of Surgeons, American Academy of Pediatrics, American Geriatrics Society, the American Heart Association, American Psychological Association, Association of Pediatric Hematology/Oncology Nurses, American Academy of Association of Professional Chaplains, Hospice Action Network Hospice and Palliative Nurses Association, Leukemia & Lymphoma Society Motion Picture & Television Fund, etc.

Even the United States Conference of Catholic Bishops (USCCB) and the Catholic Health Association of the United States have also sent a letter of support for the 2023 PCHETA, citing that it “includes crucial clarifications which ensure that the palliative and hospice care training programs abide by the provisions found in the Assisted Suicide Funding Restriction Act of 1997 (P.L. 105-12) and are not furnished for the purpose of causing or assisting in causing a patient’s death for any reason.” Unfortunately, as we have long observed, practices such as terminal sedation, withdrawal of food and water, etc. are routinely called just “patient choice” or routine comfort care-even in Catholic institutions.

And, as lawyer Sara Buscher of the Euthanasia Prevention Coalition USA writes, the 2023 HHS Office of Inspector General’s report cites problems with hospice and she says that the PCHETA’s “safeguards are illusions”, “unenforceable and pretty much meaningless.”

CONCLUSION

In September 3, 2023 article titled ” by Jonathan Turley, a 19 year-old woman with is critically ill with a rare genetic mitochondrial disease that is progressively degenerative but conscious and communicative and on a ventilator, feeding tube and dialysis wanted to be allowed to travel to Canada for an experimental treatment but doctors opposed her plan saying that “she is not accepting the realities of her terminal illness.” She and her family appealed to a court but “Nevertheless, the judge found that she is mentally incapable of making decisions for herself because “she does not believe the information she has been given by her doctors”  and “Accordingly, the court ruled that decisions about ST’s further care should be determined by the Court of Protection based on an assessment of her best interests. Her “best interest,” according to the doctors, is to die.” (all emphasis added)

As lawyer Turley writes: “Thus, the courts have declared that ST cannot choose to continue life-extending treatment and can be forced into palliative care against her will.”

Thus the “choice” of a “right to die” can trump the choice of a right to live and even become a “duty to die”.

We need to be able to trust out healthcare system to provide ethical, life-affirming and compassionate care when we need it most.

A good first step would be to make sure the 2023 PCHETA does not become law.

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

nancyvalko abortion, adoption, assisted suicide, bereavement, culture, disability, education, futility, grief, law, medical, medical ethics, nursing, pro-life, ventilators/life support

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)

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.

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

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

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

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

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

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

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

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

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

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

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

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

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

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

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

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

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

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

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

These experts’ objections to those proposed revisions are that:

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

And these experts further state that:

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

AUTOMATED ORGAN DONOR REFERRAL

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

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

and

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

CONCLUSION

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

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

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

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

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

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

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