disability

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

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

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

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

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

Nancy Valko, RN

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

By Susan Harvath and Nancy Guilfoy Valko                                                                    

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Legislature passed a ”living will” law that specifically excluded food and water from the kinds of care that may be withdrawn from a patient.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

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

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

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

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

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

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

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

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

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

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

One In Four Brain Injury Patients Who Appear Unresponsive Respond Covertly

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

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

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

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

This led one researcher to conclude that:

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

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

NEW STUDY

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

The authors explain that:

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

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

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

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

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

CONCLUSION

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

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

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

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

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

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

Shocking Article in Academic Medicine: Helping Patients Die: Implementation of a Residency Curriculum in Medical Aid in Dying

nancyvalko assisted suicide, culture, disability, education, end-of-life, euthanasia, media, medical ethics ,

“First, do no harm” is attributed to Hippocrates and is one of the principal precepts of bioethics that all healthcare providers are (or were) taught in school and is a fundamental principle throughout the world.

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

So we should not be surprised that we now have an article in the August issue of Academic Medicine (lww.com) titled Helping Patients Die: Implementation of a Residency Curriculum in Medical Aid in Dying by Spielvogel, Ryan MD, MS; Schewe, Savannah MD

The authors state the need for such a program is because:

“As more states legalize medical aid in dying (MAID), there is an ever-increasing need of physicians trained in this type of end-of-life care. However, resident curricula in MAID have not been previously reported or assessed. The authors describe a residency curriculum in MAID and evaluate the resident outcomes of this program.” (Emphasis added)

They describe the program they started in California:

“Since 2018, the Sutter Family Medicine Residency Program in California has offered training in MAID to its residents. Residents attend lectures, evaluate patients for MAID, write prescriptions for aid-in-dying medications, and attend the planned deaths of their patients if desired. In February 2023, an anonymous branching survey was sent to graduates of the program from 2019 to 2022 to evaluate residency graduation year, receipt of MAID training, currently practicing MAID, how rewarding MAID is compared with other clinical responsibilities, how stressful MAID is compared with other clinical responsibilities, comfort discussing MAID with colleagues, comfort discussing end-of-life care generally, personal view of MAID as a practice, and works where MAID is permitted.”

RESULTS OF THE SURVEY

“The authors surveyed 28 graduates and collected data from 21 former residents (response rate, 75%). Of these 21 former residents, 17 (81%) reported having opted to receive training in MAID during residency. Of the 12 residents who received training and were currently practicing in a location that allowed MAID, 7 (58%) were still practicing aid-in-dying, and of these 7 residents, 5 (71%) reported that their aid-in-dying work was more rewarding than their other clinical responsibilities.” (Emphasis added)

The authors of this study conclude that there is:

“promising preliminary evidence that MAID training in residency may be an effective strategy in the long term at closing the suspected patient access gap that purportedly exists. This preliminary evidence can be inferred by the fact that 7 of the 21 responding graduates (33%) in this study reported actively practicing MAID compared with the 30 of approximately 5,000 physicians (approximately 0.6%) practicing MAID group-wide at the large institution described above.” (All emphasis added)

CONCLUSION

Ominously, an August Gallup poll titled ” Most Americans Favor Legal Euthanasia ” stated that ” 71% of Americans polled “believe doctors should be ‘allowed by law to end the patient’s life by some painless means if the patient and his or her family request it’.”

That is a change from polling in 1950 showing only 36% support for “ending a patient’s life through painless means”. (All emphasis added)

Tragically, too many Americans are falling for the lie that it is better to be made dead than disabled or dying. Assisted suicide laws are tragically wrong and I have personally testified against them. It’s not about politics. It’s about medical ethics and the need for trust in both our healthcare system and our healthcare providers.

When Food and Water Withdrawal is Recommended to Hasten Death

nancyvalko advance directives, Alzheimer's, assisted suicide, culture, dementia, disability, end-of-life, euthanasia, food and water, hospice, law, Living wills, medical ethics, VSED , , , ,

Recently, I was contacted by a man who was concerned about hospice care for his mother.

He wrote:

“I spoke to one hospice service that was recommended and asked about AHN (artificial hydration and nutrition) and I was basically told that if my mother became unconscious, they would not attempt to provide AHN. My mother has dementia and we’ve had a few scares where we were unsure she would recover. I’d like to understand what guideline I should expect the hospice to follow and whether hospice is even worth considering. Are there prescriptive standards of care that I can reference or could you tell me basically what routine care look like?”

I wrote back that I understood his concerns, especially since I recently lost a brother with dementia, diabetes and Crohn’;s disease after a second fall down stairs. H had trouble eating so the doctors recommended a feeding tube.

Unfortunately, a person from palliative care told my sister-in-law that he would not improve so she decided to refuse a feeding tube.

I told her that newer feeding tubes were more comfortable, could make him feel better and were worth a try but she rejected this. She said my brother told her he would not want to I’ve if he developed dementia- like our mother.

It took 4 long days for him to die.

I also told him that I have been writing about this problems for years, including my 2018 blot “‘Living Wills’ to Prevent Spoon Feeding at https://nancyvalko.com/?s=living+wills+to+prevent+spoon+feeding

I have seen the deterioration of medical ethics over 50 years as a nurse from requiring life-sustaining treatment unless it was medically futile or excessively burdensome to whatever is legal.

I would recommend to you two resources from the Healthcare Advocacy and Leadership Organization (HALO):

1, “The Food and Water Dilemma” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

2. “Making a Difference: A Guide for Defending the Medically Vulnerable” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

CONCLUSION

I have worked in hospice, critical care, etc. for decades and I was glad to be able to care for my patients, my mother and others so that they had dignity, comfort and emotional support at the end of life.

I hope these resources from HALO can help bring vital information, peace and comfort to others and their families.

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!

Intensive Caring: Reminding Patients They Matter

nancyvalko assisted suicide, Cancer, culture, dementia, disability, end-of-life, medical ethics, nursing

Last month, there was a beautiful article on Medpage titled “Intensive Caring: Reminding Patients They Matter-How to care for those who no longer care about themselves” by Harvey Max Chochinov, MD, PhD.

Dr. Chochinov quotes Dame Cicely Saunders, the founder of the modern hospice movement, for her famous statement “”You matter because you are you, and you matter to the last moment of your life”.

That statement became an integral part of medical and nursing education in the past and a powerful argument against the current push for legalizing medically assisted suicide.

As Dr. Cochinov states in his article;

“There is abundant evidence that patients approaching death are susceptible to feeling that they no longer matter. When patients feel life is no longer worth living, healthcare professionals must affirm their intrinsic worth to patients for all that they are, all that they were, and all that they will become in the collective memories of those they will eventually leave behind.” (Emphasis added)

and

” A foundational element of this approach is nonabandonment, which demands committed, ongoing care and caring, even when patients no longer care about themselves. Absent someone who cares, suffering, like cancer, can grow, spread, and even kill.” (Emphasis added)

and in contrast:

“Intensive caring sees healthcare professionals hold or contain hope when patients can no longer do so themselves. This means expanding one’s therapeutic imagination to include the possibility that patients may find psychological, spiritual, and physical comfort, tolerable suffering, and for those near the end, a peaceful death. Toward the end of life, hope tends to conflate with meaning and purpose and may be nurtured through connections to those who, or things that, matter.” (Emphasis added)

MY EXPERIENCE

As a new nurse, I was nervous when I was assigned to terminally ill patients.I asked the senior nurses how to approach these patients and if I should be solemn or cheerful. The senior nurses said they didn’t know.

So I came up with a plan. After I clocked out after my shift, I started just visiting with them and listening to whatever they had to say.

I found that there were two basic questions that needed to be answered: “What do you want?” and “What are you afraid of?”

These patients opened up about wanting to die at home without burdening their families and not being in terrible pain at the end. I was able to tell them about good home healthcare options, pain management and being open with their doctors and families. This opened the door to great conversations and often even a lot of laughter!

(I was later chastised by some nurses who criticized the laughter coming from these rooms. I responded by asking them who needed to laugh more than patients in these situations?)

I also started spending time with the relatives who had questions of their own. They were relieved to talk about their fears and sadness and wanted to know how to help their loved ones.

Once, on an on an oncology (cancer) floor, an elderly woman with terminal cancer told me that she wished she could have just one more overnight sleepover with her granddaughter before she died. I told the other nurses and they all enthusiastically joined in with snacks and sodas to make it happen during one night shift, remembering their own special times with their grandmothers.

It was a great success, even though I was caught by an administrator who said I should not make this a habit.

In another case, an elderly woman with advanced cancer was considering another chemo treat but confided that she feared becoming more of a “burden” on her daughter’s family with whom she lived.

I told her that I had just spoken to her daughter the day before and the daughter told me how grateful she was for her mother’s presence and help. For example, the daughter said that since she and her husband both worked, they were relieved to have the mother there for their school-age children when classes ended. The daughter told me how the children loved climbing into bed with grandma and telling her about their day.

My elderly patient was almost reduced to tears by this revelation but then she laughed and admitted that sometimes she fell asleep when the children were talking to her.

I told my patient that whatever else she needed to consider before agreeing to the chemo, fear about being a “burden” should be eliminated.

CONCLUSION

Sadly, Dr. Chochinov cites studies that have shown when patients feel abandoned and bereft of care, they are more likely to contemplate or die by suicide. In addition, he cites studies on the desire for death in the terminally ill “report lower family support relative to those who don’t.”

According to an October 4, 2023 Medical Net news article “Review of Oregon’s assisted dying law finds significant data gaps”:

“Since 2017, fear of being a burden has been cited by around half of those opting for assisted death“. (Emphasis added)

It’s important to remember that no one has to be a medical professional to ask a friend, neighbor, church member, etc. in difficult circumstances to ask “What can I do to help?”.

Just visiting with the person, watching tv with them or bringing a favorite food can be a real day brightener and give family members a much needed boost.

Personally, I know how lonely it can be taking care of a loved one with a terminal illness or a disabling condition without the support of friends or family. Family caregivers also need support and encouragement.

But I also know the wonderful benefits of helping others, both personally and professionally, even just by being there.

Repost from 2018: My Book Review on “Nurses and Midwives in Nazi Germany: The ‘Euthanasia Programs’”

nancyvalko conscience rights, culture, disability, economics, euthanasia, food and water, law, medical ethics, mental health, nursing

In view of the current war in the Middle East, I am reposting this blog. I was shocked to learn that 31 US states don’t require schools to teach about the Holocaust.

When I was in school in the 1960s, we not only learned about the Holocaust but also read Anne Frank’s book “The Diary of a Young Girl”. We were both horrified and inspired by her courage.

In nursing school in 1969, we nurses were taught about the Holocaust as the lowest point in medical ethics and we took medical ethics very seriously. Tragically, now the majority of nursing and medical schools do not include Holocaust and genocide studies in the curriculum. In view of the current deterioration in healthcare ethics, these schools should require it.

“Nurses and Midwives in Nazi Germany-The ‘Euthanasia Programs’”
Edited by Susan Benedict and Linda Shields
Routledge Studies in Modern European History. London: Routledge 2014

My book review (abstract) was just published in the Linacre Quarterly journal. Here are some excerpts from my review. with all emphasis added only for this blog.

In my nursing education during the 1960s, the Nazi euthanasia program was covered during a class but mainly as a ghastly aberration that was unthinkable today with our now strong ethical principles. As students, we were shocked and horrified by the revelation that nurses were integral to Nazi killing programs. We had little knowledge of the mechanisms that existed to encourage nurses to kill those patients whose lives were deemed “not worth living.”

Unfortunately, it is difficult these days to find information about nurses during the Nazi regime, even on the American Nurses Association website. Thus, the editors of this book do nurses and the public a great service by examining the little-known but crucial role of nurses in the Nazi euthanasia programs. Knowing this history is more important than ever as efforts to legalize assisted suicide and euthanasia continue to grow.

The authors explain the history, education, propaganda, and pressures that led so many nurses to participate in the killing of hundreds of thousands of helpless men, women, and children in the 1930s and 1940s; they also propose a model for teaching nursing ethics using the Nazi euthanasia program to encourage nursing students to examine ethical principles and their own values as a nurse in today’s health-care system.

……

The authors start with the rise of the influential eugenics movement in the early twentieth century in countries like the United States where the American Eugenics Society even held conferences on eugenics, such as the 1937 one which included the topic “The Relation of Eugenics to the Field of Nursing.” Eventually, the US eugenics movement fell out of favor after the Nazi euthanasia programs were discovered in World War II.

Even prior to World War II, German professional nursing publications discussed eugenics as “providing a scientific basis for the positive eugenics promoting reproduction among the healthy (often of northern European descent) middle to upper classes and negative eugenics encouraging limited reproduction and forced sterilization of the ‘unfit’ (who were often poor, uneducated, and more recent immigrants) as reasonable”.  Eugenic language was most prevalent in public health and psychiatric nursing texts and in discussions of poverty, immigrants, cleanliness, and social problems.

The editors also point to the influence on Adolf Hitler of the 1920 book titled Approval of the Extermination of Worthless Human Lives by Germans Karl Binding, a jurist, and Alfred Hoche, a psychiatrist. Binding and Hoche noted that there were no legal arguments preventing legalizing the killing of those whose lives were considered not worth living. (Emphasis added)

There was extensive propaganda aimed at increasing the acceptance of euthanasia by the public and health-care providers. Only a few months after Hitler seized power, the first law, affecting people diagnosed with psychiatric conditions, was passed. It mandated sterilization for people with hereditary disorders including alcoholism and epilepsy. Propaganda emphasized wastefulness of providing health care to the chronically mentally ill and the hereditary nature of undesirable physical, mental, and social traits.

Hitler did not propose the systematic killing of psychiatric patients during peacetime because he anticipated the opposition of the churches and the German people. The beginning of World War II muted moral objections and distracted the populace with concerns of conserving resources for the war effort and was the start of state-sponsored euthanasia. The first documented killing occurred in 1939 when Hitler granted the euthanasia request of a father whose son was born blind, missing a leg and part of an arm and who “seemed to be an idiot” .

In 1939, the German Ministry of Justice proposed two new clauses:

1.“Whoever is suffering from an incurable or terminal illness which is a major burden to himself or others can request mercy killing by a doctor, provided it is his express wish and has the approval of a specially empowered doctor.”

2. “The life of a person who, because of incurable mental illness, requires permanent institutionalization and is not able to sustain an independent existence may be prematurely terminated by medical measures in a painless and covert manner” . (Emphasis added)

The program started targeting those in asylums and the disabled in nursing homes for death by lethal gas, starvation, drugs, and neglect. The Jewish population was especially targeted regardless of health.

………

In 1933, Adolf Bartels, the deputy leader of the Reich’s medical profession, provided a blueprint of the future of nursing under the Nazis. He emphasized that German nurses in social and medical service had to meet standards in the new Reich that were very different from before. The new Reich not only wanted to look after the sick and weak but also wanted to secure a healthy development of all Germans “if their inherited biological predisposition allows for it” (p. 38). Above all, the new state wanted to secure and promote a genetically sound, valuable race, and, in contrast to the past, “not to expend an exaggerated effort on the care of genetically or racially inferior people”. (Emphasis added)

As a Nazi politician stated, “a nurse is the one who should carry out the will of the State in the health education of the people”. It was not necessary for the majority of nurses to become ardent supporters of the Nazi regime for them to do the will of the Reich. One source noted that the majority of nurses who participated in a secret euthanasia program known as T4 tried to remain good nurses; an estimated 10 percent or fewer were enthusiastic supporters of Nazi practice. But, as in other areas of public life, the Reich absorbed professional nursing organizations, leaving the nursing profession with no means of expressing opposing or dissenting views as well as no organizational support for refusing to participate. (Emphasis added)

……

Using midwives, the Reich took various measures both to prevent those regarded as having a “hereditary disease” or who were “racially inferior” from reproducing while increasing the birth rate of those considered valuable and healthy. Thus, the traditional midwife focus on the mother and child was changed to focus on the nation as a whole.

Midwives could initiate proceedings for forced sterilization, and it was now a duty for midwives to report to public health officers “deformed” births and small children with disabilities before their third birthday. Reports received from doctors and midwives were reviewed by medical examiners, and based solely on the reports, the examiners decided whether the child was to be killed or spared.

Parents with such children were told about institutions for children who needed special care that were being established through the country. They were persuaded to admit these children and were assured that the children would receive the best possible care. Parents could refuse but had to sign forms stating their responsibility to supervise and care for their children. The identified children in these institutions were killed by starvation or lethal injection. Parents were told that their children had died from natural causes.

……..

The world was riveted by the 1945 Hadamar trial, the first mass atrocity trial after the Nazi regime was defeated in World War II. This trial came before the infamous Nuremburg trials that included doctors. Hadamar was covered extensively by American media but ignored by the American Journal of Nursing even though nurses were charged.

The trial involved one of the largest and most important killing centers, Hadamar Psychiatric Hospital, one of the six institutions in Germany designated for killing the mentally ill. In 1943, a ward (called an “educational home”) was set up for mixed-race children with Jewish heritage within Hadamar. Completely healthy children were killed with lethal injections. The actual numbers are not known because employees were required to take an oath of secrecy. It is estimated that more than 13,000 patients were killed in 1941 and 1942, even before the ward was set up.

In the first Hadamar trial, Head Nurse Irmgard Huber was tried with six others for killing over 400 men, women, and children. Nurse Huber was charged with “obtaining the lethal drugs, being present when some of the fatal injections were given, and being present when the false death certificates were made out”. Two male nurses were charged with administering the lethal injections. All pleaded not guilty. Their defense was that they were powerless and had inadequate knowledge to judge the morality of their actions. All denied accountability. (Emphasis added)

Trial testimony confirmed that the nurses prepared patients for their deaths, directed the entire nursing staff of the institution, and were present at the daily conferences where the falsified death certificates were completed. Duties to patients were limited to so-called kindnesses that consisted of bringing small gifts to pediatric patients and taking care to prevent patients from knowing that they would soon be killed. Head Nurse Huber insisted that she wished to render a last service to these patients and did not want to do them any harm and that she had a clear conscience.

…….

The second Hadamar trial in 1947 did not receive the same attention as the first. Twenty-five members of the Hadamar staff were charged. At this trial, Head Nurse Huber was charged with killing 15,000 German mental patients. All but one of the defendants were found guilty and served sentences ranging from two and a half to five years. The one nurse found not guilty claimed she had feigned pregnancy in order to achieve release from the killing center. (Emphasis added)

In the end, Head Nurse Huber was released from prison in 1952; the others by 1954.

………

The book presents a model used for two innovative teaching programs about this subject, one in Israel and one in Australia, perhaps the most important contribution of this book. The editors believe that the Nazi era should be taught to students, “highlighting the danger of failing to see each individual as a valuable member of human society. And while the heart of nursing and midwifery continues to be care and caring practices, it is fundamental for students to confront this history to develop insights into the causes and social constructs that enabled nurses and midwives to distort the goal of nursing practice and theory to harm and murder patients.”

The results of these programs and the responses by students appear encouraging. The editors hope that by raising these issues, students will be forced to confront their own values and beliefs, sometimes an intensely uncomfortable experience. They also believe students who are exposed to this “dark element of nursing and midwifery history” will be better prepared to face pressure or to report and oppose violations of the trust that is central to any relationship between nurses and patients

CONCLUSION

Decades after the Nazi atrocities, we are seeing a resurgence of the same “life unworthy of life” justification that drove Nazi eugenics. We see how this perspective increasingly approves the deliberate termination of some lives as “merciful” and “humane.” There is an emerging, shocking consensus that we can—or perhaps even should—choose to have our own lives terminated when our lives are considered not worth living either by ourselves or by others if we cannot speak for ourselves.

The authors of this book make it clear: we all need to know and understand the past in order not to repeat it. Hopefully, it is not too late to turn the tide of history back toward respect for all life.

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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.