food and water

New Dementia Directive Developed to Avoid Late-Stage Dementia

nancyvalko advance directives, Alzheimer's, assisted suicide, Cancer, culture, dementia, end-of-life, euthanasia, food and water, law, medical, medical ethics

In the September 25, 2025, issue of the Journal of Law, Medicine and Ethics, there is a shocking article titled “New VSED Advance Directive: Improved Documentation to Avoid Late-Stage Dementia.” VSED means voluntary stopping of eating and drinking.

The authors state:

“People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal by directing cessation of manually assisted feeding and drinking. (Emphasis added)

We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.”

CONCLUSION

I have had a lot of experience caring for people with Alzheimer’s, both personally and professionally. I have written several blogs over the years, such as “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia” (2016), Marketing Death and Alzheimer’s Disease (2019), and Alzheimer’s Association Ends Agreement with Compassion and Choices, Marketing Death and Alzheimer’s Disease (2023). In 1988, I wrote an op-ed published in the St. Louis Post-Dispatch titled “FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE“

I remember when my mother was first diagnosed with Alzheimer’s and thyroid cancer. She needed a tracheostomy (a tube in her windpipe), but was able to eat by mouth.

I was shocked when one doctor asked if we wanted her fed, and I responded angrily, “She gets up and eats ice cream out of the refrigerator! Do you want me to tackle her?!”

Of course, I knew what he meant, but he got the message.

Eventually, my mother died peacefully in her sleep at a nursing home after enjoying a meal and laughter with the whole family. It was the kind of death she told me she wanted.

Unfortunately, my younger brother developed Alzheimer’s and diabetes and was critically injured in a fall down the stairs last October. I was able to calm him and carefully feed him.

The doctor recommended a feeding tube to ensure he was getting adequate nutrition, especially for his diabetes.

However, a palliative care team was called in and disagreed with the doctor, telling my sister-in-law that my brother was not going to get better anyway.

I explained to the family that a small feeding tube was available and comfortable, but the family rejected that option.

It took several long days for him to die.

No wonder assisted suicide is being considered for Alzheimer’s patients!

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!

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.

Victory: “After Initial Hope, Medically Assisted Suicide Bill Won’t Move Forward in Maryland”

nancyvalko ANA, assisted suicide, conscience rights, culture, education, end-of-life, euthanasia, food and water, law, medical ethics, nursing, VSED

In 2019, I testified in Maryland against another “medically assisted suicide” bill that was expected to pass and wrote a blog about it titled “Lessons from the Victory against Assisted Suicide in Maryland”. It failed to pass by one vote.

Now, yet another attempt to pass an assisted suicide bill in Maryland failed by “one or two votes”, according to a Baltimore Sun article titled “After initial hope, medically assisted suicide bill won’t move forward in Maryland”, thanks to efforts like that of Mary Bogdan BSN, MA-C, DNP-S, ALNC who wrote an excellent expert witness testimony stating in part:

“The physician assisted suicide bill has been called many things: medical aid in dying, euthanasia, withholding of food and water, etc., etc., etc. The bottom line is this: I did not become a nurse to kill people. The American Nurses Association (ANA) says that nurses should support patient autonomy, the desire to have control over one’s life. I submit this; if we allow patients to end their lives as desired by them, we subject ourselves to unfathomable consequences.” (Emphasis added)

Note this sentence from the article in the Baltimore Sun “I think that as we slowly got closer to the vote and had more in depth discussions with their constituents, folks just expressed unreadiness to move on it at this time,” Smith said. “I’m obviously very disappointed, but you have to respect the decisions of the individual senators who were listening to their constituents and listening to their conscience.” (Sen. Will Smith is chair of the Judicial Proceedings Committee and a previous sponsor of the bill)

CONCLUSION

Nurse Bogdan’s testimony ends with a powerful quote from Dr.  Harvey Max Chochinov, MD, PhD in his December 2023 recent Medpage article ” Intensive Caring: Reminding Patients They Matter— How to care for those who no longer care about themselves”:

“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)

Virginia is now facing SB 280, an assisted suicide bill.

Unfortunately, the assisted suicide proponents never seem to give up and we must continue to be vigilant in every state and continue to educate legislators, healthcare providers, and the general population about these dangerous assisted suicide laws.

INSPIRATIONAL GERONTOLOGIST TRANSFORMED DEMENTIA CARE

nancyvalko Alzheimer's, assisted suicide, Compassion & Choices, dementia, end-of-life, family, food and water, inspiration, medical, medical ethics, mental health, nursing, palliative care, VSED

I don’t normally read obituaries but this obituary I recently read in the January 11, 2024 Wall Street Journal titled “Naomi Feil, Who Transformed Dementia Care, Dies at 91” was inspiring and, most of all, educational!

MY STORY

When I was 13, I became a volunteer in our local nursing home to help feed the elderly patients, some of whom had dementia. I loved it but was told I should be feeding the patients faster instead of listening to their stories.

When I said that these stories were great and really enjoyed by all the patients at the table, the nurses told me that most of the stories were probably not true anyway!

When I began my nursing career in 1969, patients with dementia were often considered just “difficult” or even “crazy”. Some were put in restraints for safety but that just seemed to agitate them more. I found that sitting and listening to them helped a lot.

So I have long had an interest in people with dementia-most often Alzheimer’s disease, not only because of the patients I cared for as a nurse, but also because of my late mother and brother who also have had the condition.

That’s why I have written blogs about the condition such as ““Repairing Our View of Dementia” and “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia”, hoping these blogs would help other caregivers, patients and their families.

NAOMI FEIL’S STORY

Naomi’s obituary is subtitled “Instead of forcing people to remember facts, she helped them express their anger and sorrow. She found it made all the difference.”

Here are some excerpts from the obituary:

“Caregivers, struggling to help people with dementia, often see their role as offering scraps of reality—reminding them what year it is, for instance, or who is in the White House.

Naomi Feil had a different strategy. As a social worker in nursing homes, she resisted the impulse to yank disoriented people back to her reality. Instead, she sought to enter their realities and affirm their emotions. Rather than offering a cup of tea or chirping that everything would be fine, she helped her charges express their anger and sorrow—and found they often were more at ease afterward.”

In the 1960s and 1970s, Feil devised what she called the validation method for dementia care. She wrote books, led workshops and established 24 validation-training centers in 14 countries.

Feil’s ideas have become fundamental to what is now called person-centered dementia care, which focuses on discovering individual needs and preserving dignity rather than following standard routines, said Sam Fazio, a senior director of the Alzheimer’s Association. In such care, he said, “You’re meeting them in their reality versus expecting them to meet us in our reality when they are no longer able to do that.” (Emphasis added)

NAOMI’S HISTORY

“When she was 4 years old, her Jewish family fled Nazi Germany. They eventually settled in Cleveland, where her father was the administrator of a nursing home, which doubled as living quarters for her family. Some of her earliest friends were very old people.”

“Her work was with the troublemakers other staff members avoided. These were the blamers, the martyrs, the moaners, the wanderers, the yellers, the pacers, the pounders whom nobody wanted,” she wrote in one of her books, “The Validation Breakthrough.”

“Sometimes nursing assistants tied people to their chairs so they wouldn’t wander off and make trouble. When she tried to engage with these misfits, a nursing assistant scolded her: “You’re getting them all worked up…. You can’t help them. I’ve been working here for five years, and I ought to know.” 

“Feil persisted and gradually learned from her encounters. ‘I learned not to contradict, patronize, argue, or try to use logic or give insight,” she wrote. Instead, she made clear she was listening. If an old person imagined the nurses were stealing her jewelry, Feil might say, ‘You loved that necklace, didn’t you. Who gave it to you?’ She could share the emotion and then explore deeper.” (Emphasis added)”

As a social worker in the 1960s and 1970s, she developed her methods through trial and error. “

“No lies

“She opposed the idea of telling comforting lies. Lies could be detected, even by those who seemed most deluded, and that would destroy trust. When an old woman said she needed to see her mother right away, Feil wouldn’t point out that her mother was dead. Nor would she promise that the mother would visit soon. Instead, she would make it a conversation: ‘You really need to see your mother! What would you like to tell her?’”

“You don’t argue, you don’t lie,” she said in a TEDx talk. “You listen with empathy and you rephrase.”

When old people were weepy, it was a bad idea to tell them things weren’t so bad, she found. It was better to let the tears flow and talk about what made them sad.”

CONCLUSION

While so much more is known now about dementia and developing treatments, many people still consider it a fate worse than death and a burden on their family. Some have even chosen assisted suicide or voluntary stopping or eating and drinking (called VSED) through “right to die” organizations such as Compassion and Choices.

But, as I wrote last February in my blog “Alzheimer’s Association Ends Agreement with Compassion and Choices”, the Alzheimer’s Association has now ended it’s agreement with Compassion and Choices (the pro-assisted suicide organization) stating:

“In an effort to provide information and resources about Alzheimer’s disease, the Alzheimer’s Association entered into an agreement to provide education and awareness information to Compassion & Choices, but failed to do appropriate due diligence. Their values are inconsistent with those of the Association.

We deeply regret our mistake, have begun the termination of the relationship, and apologize to all of the families we support who were hurt or disappointed. Additionally, we are reviewing our process for all agreements including those that are focused on the sharing of educational information.

As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.” (All emphasis added)

Good for the Alzheimer’s Association and as I can personally and professionally attest, caring for people with dementia can be a wonderful- if sometimes challenging- experience, for healthcare providers and especially the person with dementia and their families!

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.

Progress in the War Against Conscience Rights

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

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

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

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

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

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

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

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

(L. 1992 S.B. 573 & 634 § 7)

PROGRESS DURING THE TRUMP ADMINISTRATION

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

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

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

NOW STATES ARE GETTING INVOLVED

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

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

CONCLUSION

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

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

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

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

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

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

What are QALYS and Why Should We Care?

nancyvalko assisted suicide, culture, dementia, end-of-life, euthanasia, family, food and water, futility, hospice, law, medical ethics, VSED

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