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

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

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

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

Nancy Valko, RN

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

By Susan Harvath and Nancy Guilfoy Valko                                                                    

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Legislature passed a ”living will” law that specifically excluded food and water from the kinds of care that may be withdrawn from a patient.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

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

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

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

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

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

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

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

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

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

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

One In Four Brain Injury Patients Who Appear Unresponsive Respond Covertly

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

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

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

This led one researcher to conclude that:

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

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

NEW STUDY

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

The authors explain that:

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

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

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

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

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

CONCLUSION

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

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

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

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

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

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

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

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: Simon’s Law Introduced in Congress

Sheryl Crosier, the mother of Simon, a baby with Trisomy 18, and I, with my baby Karen who had Down’s Syndrome and a severe heart defect, worked for years to get a law passed In Missouri to get our children protected from the lethal medical discrimination against children with disabilities we encountered (See my 2016 blog My testimony for Simon’s Law” )

Sheryl worked hard to get other states to do the same and in 2020, I wrote a blog titled “Strongest “Simon’s Law” Yet is Passed in Iowa” .

Now, Sheryl and Allies of Simon’s Law have had HR-6344 (The Simon Crosier Act) introduced into Congress.

Nancy V.

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act) – All Star Press.com

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act)

 RNILSEN12  FEBRUARY 9, 2024 3 MIN READ 

The Board of Directors of Simon’s Law, a nationwide network of families, guardians, and professionals dedicated to creating national awareness and protection for medically endangered pediatric dependents with life-threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights, calls on all citizens to petition their congressmen to support The Simon Crosier Act.

HR-6344 (The Simon Crosier Act) proposes to amend titles XVII and XIX of the Social Security Act to require providers of services and health maintenance organizations under the Medicare and Medicaid programs to provide for certain policies to be in place relating to do-not-resuscitate orders or similar physician’s orders for unemancipated minors receiving services.

The Simon Crosier Act (HR-6344) is currently waiting for the House Committee On Energy and Commerce to mark it up. Please take a moment to reach out to committee members, especially Chairwoman Rodgers (R-Washington) at (202) 225-2006, with the following message:

My name is your name, I am the parent of a child with a life-limiting diagnosis, who is at risk of having resuscitative measures withheld without my consent, with every hospitalization in your state. Therefore, I urge you to mark up HR-6344 (The Simon Crosier Act), so that it has the opportunity to move beyond the House Committee On Energy and Commerce to protect my parental right to be included in DNR determinations for my child.

REPUBLICAN:

1.     Cathay McMorris Rodgers, WA (202) 225-2006

2.     Michael C. Burgess, TX (202) 225-7772

3.     Robert E. Latta, OH (202) 225-6405

4.     Brett Guthrie, KY (202) 225-3501

5.     H. Morgan Griffith, VA (202) 225-3861

6.     Gus M. Bilirakis, FL (202) 225-5755

7.     Larry Bushon, IN (202) 225-4636

8.     Richard Hudson, NC (202) 225-3715

9.     Tim Walberg, MI (202) 225-6276

10.              Earl L. “Buddy” Carter, GA (202) 225-5831

11.              Jeff Duncan, SC (202) 225-5301

12.              Gary J. Palmer, AL (202) 225-4921

13.              Neal P. Dunn, FL (202) 225-5235

14.              John R. Curtis, UT (202) 225-7751

15.              Debbie Lesko, AZ (202) 225-4576

16.              Greg Pence, IN (202) 225-3021

17.              Dan Crenshaw, TX (202) 225-6565

18.              John Joyce, PA (202) 225-2431

19.              Kelly Armstong, ND (202) 225-2611

20.              Randy K. Weber, Sr., TX (202) 225-2831

21.              Rick W. Allen, GA (202) 225-2823

22.              Troy Balderson, OH (202) 225-5355

23.              Russ Fulcher, ID (202) 225-6611

24.              August Pfluger, TX (202) 225-3605

25.              Diana Harshbarger, TN (202) 225-6356

26.              Mariannette Miller-Meeks, IA (202) 225-6576

27.              Kat Cammack, FL (202) 225-5744

28.              Jay Obernolte, CA (202) 225-5861

DEMOCRAT:

1.     Frank Pallone, Jr., NJ (202) 225-4671

2.     Anna G. Eshoo, CA (202) 225-8104

3.     Diana DeGette, CO (202) 225-4431

4.     Janice D. Schakowsky, IL (202) 225-2111

5.     Doris O. Matsui, CA (202) 225-7163

6.     Kathy Castor, FL (202) 225-3376

7.     John P. Sarbanes, MD (202) 225-4016

8.     Paul Tonko, NY (202) 225-5076

9.     Yvette D. Clarke, NY (202) 225-6231

10.              Tony Cárdenas, CA (202) 225-6131

11.              Raul Ruiz, CA (202) 225-5330

12.              Scott H. Peters, CA (202) 225-0508

13.              Debbie Dingell, MI (202) 225-4071

14.              Marc A. Veasey, TX (202) 225-9897

15.              Ann M. Kuster, NH (202) 225-5206

16.              Robin L. Kelly, IL (202) 225-0773

17.              Nanette Diaz Barragán, CA (202) 225-8220

18.              Lisa Blunt Rochester, DE (202) 225-4165

19.              Darren Soto, FL (202) 225-9889

20.              Angie Crian, MN (202) 225-2271

21.              Kim Schrier, WA (202) 225-7761

22.              Lori Trahan, MA (202) 225-3411

23.              Lizzie Fletcher, TX (202) 225-2571

The contact list of politicians and their office contacts is available from the public Congress website for the Committee On Energy and Commerce.

For further information or media inquiries, please contact:
Sheryl Crosier – Mother of Simon, Founder of Simon’s Law – Sheryl@SimonsLaw.org
Sand Enzminger – Director of Operations, Simon’s Kids – Sandi@SimonsLaw.org
Website: www.SimonsLaw.org

Read about Simon’s Life and His Impact

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

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.

Progress in the War Against Conscience Rights

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

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

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

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

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

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

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

(L. 1992 S.B. 573 & 634 § 7)

PROGRESS DURING THE TRUMP ADMINISTRATION

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

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

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

NOW STATES ARE GETTING INVOLVED

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

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

CONCLUSION

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

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

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

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

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

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

AN INCREDIBLE STORY OF RECOVERY AND HOPE

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)

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)

What are QALYS and Why Should We Care?

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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.