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

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed ‘Mike” was comatose!

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients later woke up.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate consciousness. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him

Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma

However, there is now a new article in the Journal of Neurotrauma titled “Prognostication and Goals of Care Decisions in Severe Traumatic Brain Injury: A Survey of The Seattle International Severe Traumatic Brain Injury Consensus Conference Working Group” about a panel of 42 physicians and surgeons recognized for their expertise of traumatic brain injury that states:

“Overall, panelists felt that it would be beneficial for physicians to improve consensus on what constitutes an acceptable neurological outcome and what chance of achieving that outcome is acceptable. “Over 50% of panelists felt that if it was certain to be enduring, a vegetative state or lower severe disability would justify a withdrawal of care decision.” (Emphasis added)

In addition:

“92.7% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes a good or bad neurological outcome (Fig. 3A). Similarly, 95.1% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes an acceptable chance of achieving a good neurological outcome.” (All emphasis added)

RESPONSIBILITY FOR WITHDRAWAL OF CARE DECISIONS

As the article states:

“Although many would report that decision making following devastating TBI is the responsibility of well-informed substitute decision makers familiar with the wishes of a patient,12,25 our survey confirms that the relationship between clinicians and decision makers is complex. As our panelists recognize the marked influence that physicians have on aggressiveness of care, it would seem that in many cases physicians are actually the decision makers and that substitute decision makers are limited by the perceptions (communicated to them. (Emphasis added)

CONCLUSION

Legally, the issue of who makes the decision when treatment or care can be withdrawn as “medically futile” varies.

Often ethics committees are called in to review a situation. Sometimes, as in the Simon Crosier case, families can be unaware that treatment is being withdrawn.

For years, Texas has had a controversial “futile care” law that allows treatment to be withdrawn with the patient or family having only 10 days to find another facility willing to provide care. This was challenged in court and was successful in the Baby Tinslee Lewis’ case . Tinslee eventually went home.

Now a new bill H B3162 has passed in the Texas legislature and is headed to the Governor to be signed and Texas Right to Life states that:

HB 3162 modifies several aspects of the Texas Advance Directives Act, including the 10-Day Rule. The bill by Representative Klick offers more protections to patients, such as:

  • Requiring the hospital to perform a procedure necessary to facilitate a transfer before the countdown may begin, 
  • Specifying that the process cannot be imposed on competent patients, 
  • Prohibiting decisions from being based on perceived “quality of life” judgments, and 
  • Giving the family more notice of the ethics committee meeting and more days to secure a transfer.”

Every state should consider having such protections for vulnerable patients and their families.

Is Donation after Circulatory Death a “Game Changer” for Heart Transplant?

In 2002, I wrote a paper titled “Ethical Implications of Non-Heart-Beating Organ Donation” (NHBD) and presented it at Trinity College at a medical ethics conference. At that time, brain death organ donation was well-known, but NHBD was virtually unknown to the public although it comprised about 2% of organ donations at that time.

As I wrote then:

“It is now apparent that the number of organs from people declared brain dead will never be enough to treat all patients who need new organs. ” and “doctors and ethicists have turned to a new source of organs — patients who are not brain dead but who are on ventilators and considered “hopeless”. In these patients, the ventilator is withdrawn and organs are quickly taken when cardiac death (DCD) rather than brain death is pronounced.”

Now, the term “Donation after Circulatory Death” (DCD) is used instead and means:

“Circulatory death occurs when the heart has irreversibly stopped beating and when circulation and oxygenation to the tissues irreversibly stops.” (Emphasis added)

However, with heart transplantation, the heart will be restarted as explained in a March 24, 2023 Medscape article “A ‘Game Changer’ for Heart Transplant: Donation After Circulatory Death Explained”.

In the article, Adam D. DeVore, MD, MHS is interviewed by Ileana L. Piña, MD, MPH and explains how this works and why he is excited:

“Adam D. DeVore, MD, MHS: In the field of heart transplant, DCD or donation after circulatory death is really a game changer. For decades now, we’ve been doing heart transplants from donors who die or have been declared brain dead.

There’s a whole population of potential donors who have very similar neurologic injuries — they’re just not technically declared brain dead — whose organs the family would like to donate. We didn’t have a way before.”

“There are two mechanisms. The family would withdraw care. Somebody affiliated with the hospital would declare that the donor has died. There’s usually a standoff period. That is a little variable, but it’s around 5 minutes.” (All emphasis added)

and added that then:

“…There are then two ways where that heart could be resuscitated or revived, outside the body on the organ care system. Or it could remain in the body through normothermic regional perfusion (NRP), or they’ll go on cardiopulmonary bypass and re-perfuse the heart in the room, and then look at the heart and try to evaluate it before donation. The rest of that donation looks just like every other brain-dead donation.”

…I remember when we were first starting this, I was thinking of how we would explain this to potential recipients and what would this look like. It turns out that something terrible has happened, and families that want to donate organs are relatively enthusiastic and less focused on the details.” (All emphasis added)

ETHICAL CONCERNS

In another March 23, 2023 Medscape article titled “Does New Heart Transplant Method Challenge Definition of Death?, Sue Hughes, a journalist on Medscape Neurology, writes:

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

When the NRP technique was first used in the US, these ethical questions were raised by several groups, including the American College of Physicians (ACP).

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

Harry Peled, MD, Providence St Jude Medical Center, Fullerton, California, co-author of a recent Viewpoint on the issue said that:

“There are two ethical problems with NRP, he said. The first is whether by restarting the circulation, the NRP process violates the US definition of death, and retrieval of organs would therefore violate the dead donor rule.

“American law states that death is the irreversible cessation of brain function or of circulatory function. But with NRP, the circulation is artificially restored, so the cessation of circulatory function is not irreversible,” Peled points out.

The second ethical problem with NRP is concern about whether, during the process, there would be any circulation to the brain, and if so, would this be enough to restore some brain function? Before NRP is started, the main arch vessel arteries to the head are clamped to prevent flow to the brain, but there are worries that some blood flow may still be possible through small collateral vessels.” (Emphasis added)

Nader Moazami, MD, professor of cardiovascular surgery, NYU Langone Health, New York City, is one of the more vocal proponents of NRP, stating that:

“”Our position is that death has already been declared based on the lack of circulatory function for over 5 minutes and this has been with the full agreement of the family, knowing that the patient has no chance of a meaningful life. No one is thinking of trying to resuscitate the patient. It has already been established that any future efforts to resuscitate are futile. In this case, we are not resuscitating the patient by restarting the circulation. It is just regional perfusion of the organs.” and “We are arguing that the patient has already been declared dead as they have a circulatory death. You cannot die twice.” (Emphasis added)

CONCLUSION

Ms. Hughes also wrote in her article that:

“Heart transplantation after circulatory death has now become a routine part of the transplant program in many countries, including the United States, Spain, Belgium, the Netherlands, and Austria.”

And in the US, “348 DCD heart transplants were performed in 2022, with numbers expected to reach 700 to 800 this year as more centers come online.” And “It is expected that most countries with heart transplant programs will follow suit and the number of donor hearts will increase by up to 30% worldwide because of DCD. ”

So how important is it to have strict medical ethics standards in organ donations?

In a February 9, 2023 Transplant International article titled “Organ Donation After Euthanasia in Patients Suffering From Psychiatric Disorders: 10-Years of Preliminary Experiences in the Netherlands“, it was reported that:

“Over the ten-year study period 2012–2021 59,546 patients underwent euthanasia of whom 58,912 suffered from a somatic (physical) disorder. The number of patients that underwent euthanasia for an underlying psychiatric disorder was 634 (1.1%). An estimated 10% (5955) of patients who undergo euthanasia in general are medically eligible to donate one or more organs (11).” (Emphasis added)

Organ transplants can be wonderful and lifesaving, but we must know all the facts, be able to trust our healthcare providers, and especially not allow the “slippery slope” of legalized assisted suicide/euthanasia to get any steeper.

Canada and the Euthanasia Endgame

Several nations like Belgium and the Netherlands have had legalized assisted suicide and/or euthanasia, even for minors and for people just “tired of life But now the worst is Canada which legally approved MAiD (medical aid in dying) it in 2016, according to Alex Schadenberg of the Euthanasia Prevention Coalition

Alex Schadenberg quotes Kevin Yuill, a professor who spoke at the Euthanasia Symposium in Brussel in November who said:

“Canada has the dubious honour of being the global capital of euthanasia. Through its medical assistance in dying (MAID) programme, Canada killed more people with lethal injections last year than any other country on Earth – many of them poor, homeless or hopeless. And soon, from March 2023, lethal injections will be offered to anyone who judges their mental-health difficulties to be intolerable.”

Even worse, some people with disabilities are saying that they are being pressured to take a lethal overdose.

In a November 2022 UK article titled “Canadian man alleges hospital is pressuring him to end his life by assisted suicide”, a man with a disease affecting his brain and muscles is suing his Canadian hospital after secretly recording the hospital staff, stating:

“They asked if I want an assisted death. I don’t. I was told that I would be charged $1,800 per day [for hospital care]. I have $2 million worth of bills. Nurses here told me that I should end my life. That shocked me”.

Mr. Foley has applied for “direct funding” from the Canadian government to “employ agency workers of his own choosing and manage his schedule”.

  

The article also cited “a pro-assisted suicide and euthanasia group of doctors in Canada have recently said that doctors have a “professional obligation” to initiate discussion of assisted suicide and euthanasia with patients who might fit the legal criteria. They claim there is nothing in Canadian law which forbids this.”

CANADIAN STATISTICS

The UK article also notes that:

“In 2021, 10,064 people ended their lives by assisted suicide and euthanasia, an increase of over 32% from the previous year, accounting for 3.3% of all deaths in Canada.

According to the latest report on Medical Assistance in Dying from Health Canada, 17.3% of people also cited “isolation or loneliness” as a reason for wanting to die. In 35.7% of cases, patients believed that they were a “burden on family, friends or caregivers”. (Emphasis added)

Canada was set to approve MAiD for people with mental illness but recently, the Canadian government announced its plan to temporarily delay MAiD eligibility  for people whose sole medical condition is mental illness.

CONCLUSION

In 1993, just 3 years after Nancy Cruzan, a woman in a so-called “vegetative state” died a long 12 days after her feeding tube was removed in my home state of Missouri, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, a prominent ethicist and one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

Ominously, he also noted that:

“..increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.)

“(O)ur collective determination as to what lives are worth living” is the very real and frightening potential endgame of legalized euthanasia and it should be stopped now!

How Accurate Is Prenatal Testing?

I have written about the alleged accuracy of prenatal blood testing before as both a nurse and a mother in my blog “A Dark Side of Prenatal Testing” and “Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion”.

Now, ProPublica, a self-described nonprofit investigative newsroom, just published an article titled “They Trusted Their Prenatal Test. They Didn’t Know the Industry Is an Unregulated “Wild West.”

The authors tell the story of a mother who had an in vitro diagnostic test (IDT) that came back negative, meaning her baby did not have the serious conditions that were tested for.

However, when the mom delivered her daughter, the baby had serious problems and only lived 28 hours.

The autopsy showed that the baby had an extra 13th chromosome, a condition that was part of the testing. The chances that the baby would have not have this or two other serious conditions was “greater than 99%.”

The test was a simple blood draw designed to check for an array of genetic anomalies but the mother, a science researcher, read academic articles showing a higher risk of inaccurate results than she realized.

The mom found other women reporting problems with the tests also so she tried contacting the company that made the test, hoping she would help other families.

She was unsuccessful.

She found out that if she had taken other common commercial tests like some for Covid-19 or pregnancy, the company would have had to inform the US Food and Drug Administration about “reports of so-called adverse events.”

The mom found out that the test she took fell into a regulatory void:

“No federal agency checks to make sure these prenatal screenings work the way they claim before they’re sold to health care providers. The FDA doesn’t ensure that marketing claims are backed up by evidence before screenings reach patients. And companies aren’t required to publicly report instances of when the tests get it wrong — sometimes catastrophically.

The broader lab testing industry and its lobbyists have successfully fought for years to keep it this way, cowing regulators into staying on the sidelines.”

The stakes are high for families with the article stating:

 “Upwards of half of all pregnant people (sic) now receive one of these prenatal screenings.”

And that the companies stress that “ultimately, it’s the responsibility of health care providers, who order the tests, to inform patients about the limits of screenings.”

CONCLUSION

When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome.

Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS.

I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy.

After that, I was remarkably worry-free during my last pregnancy and delivered a healthy girl.

But maternity care has changed a lot since 1985, especially since the American College of Obstetricians and Gynecologists (ACOG) now states that Abortion is Healthcare Abortion is Healthcare | ACOG

But despite the possible inaccuracies of prenatal test, there is help if a baby is diagnosed with an unexpected condition like Down Syndrome or Trisomy 13.

Thankfully, there are even programs like Perinatal Hospice & Palliative Care: Continuing Your Pregnancy that can help in the event of a prenatal diagnosis that indicates a baby may die before or after birth.

Where there is love, there is always hope!

New Study Shows Stem Cells and Prenatal Surgery Can Help Babies with Spina Bifida

Spina Bifida is a birth defect that occurs when the spine and spinal cord do not develop completely in an unborn baby. The resulting opening in the spine leaves  the spinal cord and nerves exposed.

That exposure can cause damage leading to paralysis or mobility problems, a buildup of excess fluid on the brain, and infection.

Spina Bifida can sometimes be diagnosed during pregnancy by a blood test, ultrasound or amniocentesis. Sometimes the diagnosis is not made until after birth.

Before the 1990s, treatment for severe spina bifida involved surgery on the baby after birth to close the defect but the procedure could not repair already damaged nerves.

In 1997, the first prenatal surgery was done and in 2011 and 2020, major studies showed that prenatal repair resulted in better outcomes.

But now, in an October 10, 2022 Medscape article Stem Cell Treatment Helps Babies with Spina Bifida”,  a clinical trial at UC Davis Health is showing that a new stem cell treatment-given while the unborn baby is still in the womb-appears to be effective at reversing paralysis and other problems caused by spina bifida in newborns.” (Emphasis added)

But, as the article rightly states,:

“The researchers have expressed caution about drawing full conclusions so far, but the treatment appears promising. They plan to release information about how the babies are doing at developmental milestones throughout the study process.” (Emphasis added)

The clinical trial started in 2021 and involves myelomeningocele, “a severe form of spina bifida where the spinal canal doesn’t fully close before birth, leading to spinal cord damage.”

According to the article, “So far, three babies have received the unique treatment, which is delivered while a fetus is still in the womb.”

DIAGNOSIS AND TREATMENT

Today, prenatal testing is routinely offered to pregnant women, but abortion is too often offered or recommended when prenatal testing shows a possible adverse diagnosis like spina bifida.

According to the Spina Bifida Association, the condition can often be diagnosed before birth:

“There are 3 tests, but, it is important to remember that no medical test is perfect and the results are not always 100 percent accurate. Spina Bifida can be detected in utero by one of the following tests: 

  1. A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
  2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
  3. A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.”

Ironically, one of the big health institutions in my city that provides “Pregnancy termination for women choosing to terminate a pregnancy due to fetal abnormalities or maternal health conditions” also has a Fetal Care Center that uses prenatal surgery not only for spina bifida but also for other conditions such as amniotic band syndrome, twin-to-twin transfusion syndrome, airway/trachea obstruction and blocked urinary tract, etc.!

CONCLUSION

When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome and a severe heart defect.

I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy. I also knew how to find help if any of my children-born or unborn-had a possible health a problem.

Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS (Chorionic villus sampling)

(Today, we have routine non-invasive prenatal screening blood tests called NIPTs but the Federal Food and Drug Administration issued an alert on April 19, 2022 “Genetic Non-Invasive Prenatal Screening Tests May Have False Results: FDA Safety Communication:

“While health care providers widely use NIPS tests, none have yet been authorized, cleared, or approved by the FDA. The accuracy and performance of NIPS tests have not been evaluated by the FDA and these tests can give false results, such as reporting a genetic abnormality when the fetus does not actually have one.” (Emphasis added))

But most importantly, I told them that my daughter Karen was a blessing who helped change many lives for the better during her tragically short life-especially mine.

After Karen died, I became a volunteer babysitter for many children with a range of disabilities and their parents also told me how they became better people because of their child with a disability.

Life must be our highest priority!

What Will It Take?

I recently wrote a blog titled “The War Against Crisis Pregnancy Centers Escalates” about the attacks on crisis pregnancy centers after the Dobbs v. Jackson Women’s Health Organization decision returning abortion law to the individual states was outrageously leaked.

 Now that the final Dobbs v. Jackson Women’s Health Organization decision  is public, the violence against crisis pregnancy centers and churches has continued with few if any arrests.

However, now even pro-life individuals have been targeted.

For example, an 84-year-old pro-life volunteer was shot on Sept. 20 while going door-to-door in her community to talk about a ballot measure concerning abortion in Michigan. Thankfully, she is expected to recover.

Even more disturbing and over the last weekend, was the news that the FBI raided the home of a pro-life advocate Mark Houck and arrested him in front of his 7 crying children for the alleged crime of “Assaulting a Reproductive Health Care Provider”.

According to the National Review, Mrs. Houck “described an incident in which her husband ‘shoved’ a pro-abortion man away from his 12-year-old son after the man entered ‘the son’s personal space’ and refused to stop hurling ‘crude… inappropriate and disgusting’ comments at the Houcks.” The man did not sustain any injuries but did try to sue Houck. The charges were later dismissed.

WHAT WILL IT TAKE TO RESOLVE THE NATIONAL TURMOIL SURROUNDING ABORTION?

I was a young intensive care unit nurse when the Supreme Court’s Roe v. Wade decision came down in 1973. Like most people I knew, I was surprised and shocked when abortion was legalized. However, I quickly found that my medical colleagues were split on the issue, and I was vehemently attacked for being against abortion. I was even asked what I would do if I was raped and pregnant. When I replied that I would not have an abortion and would probably release the baby for adoption, I was ridiculed. Our formerly cohesive unit began to fray.

But I was professionally offended by the pro-life argument that legalizing abortion would lead to the legalization of infanticide and euthanasia.  

It was one thing to deny the truth with an early and unobserved unborn baby, but it was quite another to imagine any doctor or nurse looking at a born human being and killing him or her.

But I was wrong.

As I wrote in my 2019 blog “Roe v. Wade’s Disastrous Impact on Medical Ethics”, personal and professional experiences opened my eyes to the truth.

I have seen the push for “choice” to expand to abortion for any reason up to birth, infanticide and medical discrimination against people with disabilities, including my own daughter who had Down Syndrome.

I wasn’t long until “choice” also became the heart of the “right to die” movement to include to include legalized assisted suicide and euthanasia, withdrawal of feedings from people with serious brain injuries whose “choice” was exercised by family members or doctors and even the voluntary stopping of eating and drinking (called VSED by the pro-death-choice group Compassion and Choices).

With VSED, Compassion & Choices maintains that:

“Many people struggle with the unrelieved suffering of a chronic or incurable and progressive disorder. Others may decide that they are simply “done” after eight or nine decades of a fully lived life. Free will and the ability to choose are cornerstones of maintaining one’s quality of life and dignity in their final days”.  (All emphasis added)

CONCLUSION

I have long preferred the term “respect life” to “anti-abortion” because obviously we should respect the lives of all people at any age or stage of development.

But this doesn’t mean anger or vilification of others.

Over the years I have written, spoken, debated, etc. people who do not agree with the respect life philosophy, but I never became angry.

I also found that listening to and not judging others-especially people in crisis-was crucially important.

For example and many years ago, I ran into an acquaintance I will call Diane and I congratulated her on her obvious pregnancy.

I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

Diane, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Downs, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and ran up to me to apologize for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities. Special Olympics is considered inspirational but Down’s Syndrome is too often seen as a tragedy.

Whether it is abortion or legalized assisted suicide, we must be prepared to help desperate people either personally and/or referring them to a crisis pregnancy center or suicide hotline.

Every life deserves to be respected.

Pain, Choice, and Canada’s now “most permissive euthanasia legislation in the world”

In his excellent July 10, 2022 blog, Alex Schadenberg, chair of the International Euthanasia Prevention Coalition, reveals that now “Canada’s medical assistance in dying (Maid) law is the most permissive euthanasia legislation in the world”.

He says “Canada’s MAiD law currently allows suicide facilitation for persons with disabilities and is on track to expand in March 2023 to those living with mental illness. “ (Emphasis added)

How did assisted suicide/euthanasia laws get so far and so fast down the proverbial “slippery slope”?

In my December, 2016 blog “Pain and ‘Choice’”,  I wrote about how I saw the warning signs when I was a new nurse in 1969.

Here is my blog:

PAIN AND “CHOICE”

December 15, 2016 nancyvalko 

It was 1969 and I was fresh out of nursing school when I was assigned to a patient I will call “Jenny” who was thirty-two years old and imminently dying of cancer. She was curled up in her bed, sobbing in pain and even moaned “just kill me.” The small dose of Demerol I injected into her almost non-existent buttocks every four hours “as needed” was not helping. I reassured Jenny that I was immediately calling the doctor and we would get her more comfortable.

However, I was shocked when the doctor said no to increasing or changing her medication. He said that he didn’t want her to get addicted! I told him exactly what Jenny said and also that she was obviously very close to death so addiction would not be a problem. The doctor repeated his no and hung up on me.

I went to my head nurse and told her what happened, but she told me I had to follow the doctor’s order. Eventually, I went up the chain of command to the assistant director of nursing and finally the Chief of the Medical Staff. The verdict came down and I was threatened with immediate termination if I gave the next dose of Demerol even a few minutes early.

I refused to abandon Jenny so for the next two days before she died, I spent my time after my shift sitting with her for hours until she fell asleep. I gave her whatever food or drink she wanted. I stroked her back, held her hand and told stories and jokes. I asked her about her life. I did everything I could think of to distract her from her pain and make her feel better. It seemed to help, although not enough for me. I cried for Jenny all the way home.

And I was angry. I resolved that I would never watch a patient needlessly suffer like that again.

So, I educated myself by reading everything I could about pain medicine and side effects. I also pestered doctors who were great at pain control to teach me about the management, precautions, and rationale of effective pain management. I used that knowledge to advocate and help manage my patients’ pain as well as educating others.

I was delighted to see pain management become a major priority in healthcare and even called “the fifth vital sign” to be evaluated on every patient. I saw new developments like nerve blocks, new drugs, and regimens to control pain and other techniques evolve as well as other measures to control symptoms like nausea, breathlessness, and anxiety. Now we also have nutritional, psychological, and other support for people with terminal illnesses and their families.

Best of all was that I never again saw another patient suffer like Jenny despite my working in areas such as ICU, oncology (cancer) and hospice.

TWENTY-FOUR YEARS LATER

When my oldest daughter was 14, she attended a public high school where the science teacher unexpectedly started praising the infamous Dr. Jack Kevorkian and his public campaign for legalized assisted suicide and euthanasia.  Kevorkian’s first reported victim was Janet Adkins, a 54 year old woman with Alzheimer’s in no reported physical pain who was hooked up to a  “death machine” in the back of a rusty van. Mrs. Adkins was just the first of as many as 130 Kevorkian victims, many if not most of whom were later found to have no terminal illness. Kevorkian escaped prosecution-even after he harvested a victim’s organs and offered them for transplant-until the TV show 60 Minutes aired Kevorkian’s videotape showing him giving a lethal injection to a man with ALS (Lou Gehrig’s disease). Shockingly, Kevorkian served only 8 years in prison before he was paroled and eventually became a media celebrity peddling assisted suicide and euthanasia.

My daughter, who never before showed any interest in my speaking and writing on the topic of assisted suicide, now stood up and peppered her teacher with facts about Kevorkian. The teacher asked her where she learned her information and she answered, “From my mom who is a cancer nurse”.

Sarcastically, he responded “So your mother wants to watch people suffer?” My daughter responded “No, my mother just refuses to kill her patients!” End of discussion.

CONCLUSION

But not the end of the story. Tragically, we now have legalized assisted suicide in several states and serious efforts  to expand it to include people without physical pain but with conditions like Alzheimer’smental illness or other psychological distress as well as even children.

As Wesley Smith recently and astutely observed:

 “Moreover, the statistics from Oregon and elsewhere show that very few people commit assisted suicide due to physical suffering. Rather, the issues are predominately existential, such as fears of being a burden or losing dignity

The public is being duped by groups like Compassion and Choices that campaign for legalized assisted suicide on the alleged basis of strict criteria for mentally competent, terminally ill adults in unbearable physical pain to freely choose physician-assisted suicide with (unenforceable) “safeguards”.

The emerging situation throughout the world is more like Kevorkian’s dream of unfettered and universal access to medical termination of the lives of “expendable” people. How much easier is that when people with expensive mental health problems, serious illnesses or disabilities can be encouraged to “choose” to be killed?

Rest in Peace, “Melissa”

I have written blogs about my elderly friend “Melissa” (not her real name) and some of her health care experiences to explain some of the pitfalls elderly people may encounter when they get seriously ill.

I have known “Melissa” for decades and, with her permission, she agreed to my writing about her in my blogs. She was thrilled to hear about my 2018 blog “Covid 19 and Nursing Homes”   and my 2020 blog Don’t Write Off the Elderly”.

She even told me she like the name “Melissa” better than her real name!

I first met Melissa when she was in her 80s through her daughter who is also one of my favorite people.

Both were involved in planning the beautiful wedding reception at my home when my second husband and I were married in 2008. Melissa even remembered my favorite flower and made beautiful centerpieces with them for every table.

After Melissa could no longer drive, I took her to Mass at her parish and then to Chic-Fil-A on Fridays for breakfast with her daily Mass friends until she couldn’t physically make it.

I then visited her on Fridays and was inspired when she accepted hospice care and the care of her family with grace and gratitude.

Eventually, she spent her last days in a bed near a large window where she could watch the birds at her birdfeeder and have some of her beloved flowers at her bedside.

During that time, Melissa and I laughed a lot, prayed together, chatted about current events and family, and watched funny videos and old episodes of TV shows she enjoyed like “Barney Miller” and “Bewitched”.

She also told me many of the fascinating stories behind the pictures of her and her family covering the walls of her room.

Melissa died peacefully on May 6, 2022, at her home at the age of 99 years, 9 months and 5 days, lovingly cared for by her family and great home health and hospice providers.

A devout Catholic, Melissa was unafraid of death and knew she would meet her late husband and her son who died at age 4. Another son unexpectedly died at 56, shortly before Melissa.

Melissa generously donated her body to Logan College to help future doctors with their education.

After her funeral Mass, her family had a Celebration of Life event with pictures and stories about her life. There was a lot of laughter and some tears as we all talked about Melissa and what she meant to us.

CONCLUSION

Melissa and her family are an inspiration to me and an example of how to have a good death, something that seems impossible to many people.

I visited her the day she died peacefully and comfortably, but not awake.

She died just as she hoped.

We will miss you Melissa but we will never forget you!

Rest in peace.

A DISTURBING BUT IMPORTANT LOOK INTO THE TRAINING OF DOCTORS FOR MEDICALLY ASSISTED SUICIDE

Most people seem to assume that medically assisted suicide is a simple matter of getting a doctor to prescribe a lethal overdose, taking a pill or two and then go to sleep and die. Many seem unaware that a second consulting doctor (or other healthcare provider in some states) must agree.

This view, abetted by polls, well-funded groups like Compassion and Choices as well as a mostly sympathetic mainstream media, is disastrously wrong.

A stunning February 2022 article in Medscape for healthcare providers titled  “Medical Aid in Dying: Your Clinical Guide and Practice Points” exposes some very real problems with medically assisted suicide that are largely hidden from the general public.

But while citing a Gallup poll showing that 74% of the American public support legalizing “medical aid in dying” (their preferred term for medically assisted suicide) as well as 58% of doctors, the article admits that:

“Study data, however, have revealed a discrepancy between attitudes about legalization and willingness to practice. Only 15% to 22% of physicians in favor of legal access to medical aid in dying would be willing or likely to provide such assistance” (Emphasis added)

And citing Oregon, the first state to legalize assisted suicide, the article claims that:

“Pain management and hospice use have improved in Oregon since passage of the Death with Dignity Act” but also that “Opponents of medical aid in dying express concern that in Oregon, more than 70% of patients who elect medical aid in dying are elderly and have cancer–both being commonly associated with depression–but fewer than 5% are referred for psychiatric evaluation”. (Emphasis added)

Tellingly, the article recognizes the toll assisted suicide can take on the medical professionals involved:

“A Mental Note for the Healthcare Provider: Discussion of end-of-life options represents a profound event for both the patient and the healthcare provider. Do not neglect your own self-care while guiding your patient through the emotionality that can be brought on by end-of-life decision-making.” (Emphasis added)

THE MEDICALLY ASSISTED SUICIDE PROTOCOL IS COMPLICATED

It is recommended that the patient does not eat or drink for 6 hours before ingesting the lethal dose called D-DMAPh.

Anti-nausea medication and a gastric motility medication is to be taken 1 hour before ingesting the life-ending medication.

A large dose of Digoxin to slow the heart is taken 30 minutes later and then a compound of anxiolytic, opioid and tricyclic medications are to be swallowed in less than 90 seconds.

Recommendations include:

– adding a favorite liquor may counter the bitterness of the mixture

– a small amount of sorbet can be ingested to avoid potential post-ingestion esophageal burning or distress

-Prepare for the possibility that the medication may not work if not quickly and fully ingested; it is crucial that the patient who self-administers not fall asleep before consuming the full dose-Patients should not take the medicine when alone or in a public place

-kept carefully out of the reach of children and vulnerable adults

-and must be disposed of properly. (Emphasis added)

For special circumstances:

“It is legal in all jurisdictions for physicians, other HCPs, or family members to assist in medical aid in dying but not to administer medical aid-in-dying medications.[1-9] The law requires that the patient self-administer the medication through ingestible means, which may include:

•         Drinking the medication mixture

•         Ingesting through a nasogastric tube

•         Ingesting the medication through a feeding tube, or

•         Insertion through a rectal catheter

Patients are permitted to receive help in preparing or mixing the medication for self-administration, but the patient must take a voluntary, affirmative act (i.e., swallowing or pushing a syringe) and administer the medication him- or herself. Medical aid-in-dying laws do not allow physicians, family members, or anyone else, including the dying person, to administer medical aid-in-dying medication by intravenous (IV) injection, parenteral injection, or infusion.” (Emphasis added)

The article states that decision-making capacity is the basis of informed consent and that:

“Guidance begins with assessment of the patient’s decision-making capacity and understanding of palliative measures as alternatives to or concurrent with medical aid in dying. No matter the practice specialty, HCPs (health care providers) are trained on the art of assessing a patient’s medical decision-making capacity and their ability to understand the situation, appreciate the consequences, reason rationally, and express a choice.” (Emphasis added)

If there is a concern, the patient:

 “must be referred for additional evaluation by a licensed psychiatrist, clinical psychologist, or clinical social worker. The request for aid-in-dying medication does not proceed unless the mental health professional affirms that the patient is free of mental illness, acute psychological distress, or demoralization.” (Emphasis added)

COMPLICATIONS

The article admits that complications such as regurgitation and seizures can occur but says they are infrequent.

Prolonged dying can also occur so the “families should make contingency plans for how to manage such circumstances” and “remain calm and engage with hospice or other support services as needed. Families should understand that to help avoid unnecessary deployment of police and emergency medical personnel, they should not call 911.” (Emphasis added)

The article also warns that:

“Those present at the death may witness the following changes, which frequently occur during the natural dying process: snoring; gurgling noises; changes in rate of breathing; and fluctuations in body temperature that may leave their skin cool, warm, moist, or pale. Physical movements or other external signs of distress are sometimes exhibited, but the internal peace of the person is not disturbed.” (Emphasis added)

Sadly, the article reports that 4% of patients in Oregon “chose not to inform their families of their decision” even though support groups “strongly recommend that at least 1 other person be present” but not the doctor.

LEGAL REQUIREMENTS DIFFER WIDELY BETWEEN STATES

The article illustrates how dramatic the differences are in state laws such as the eligible medical providers in New Mexico to include APRNs (advance practice registered nurses) and physician assistants and no consulting provider is required if the patient is in hospice.

and

“In Hawaii, a mental health evaluation is mandatory for all patients requesting medications under the law. In New Mexico, a mental health evaluation is also required if the patient has a recent history of a mental health condition or intellectual disability.” (Emphasis added)

Required waiting periods to make the second request varies from as little as none in Oregon and New Mexico if the patient is unlikely to survive the waiting period to at least 20 days in Hawaii.

The article also recommends that health care providers familiarize themselves with the assisted suicide group Compassion and Choice’s Doc2Doc helpline that “offers free, confidential telephone consultation with clinicians who are experienced in providing end-of-life medical care”.

Right now, 9 U.S, states (California, Colorado, HawaiiMaine, New Jersey, New Mexico, Oregon, VermontWashington)  and the District of Columbia have medically assisted suicide laws and 12 states (Massachusetts, Delaware, Minnesota, New York, Pennsylvania, North Carolina, Indiana, Kentucky, Rhode Island, Virginian, Arizona and Utah) have bills in their legislatures.

And there are more states seeking to expand their existing assisted suicide laws such as Vermont S 74  that threatens conscience rights by defining assisted suicide as a “healthcare service” and allows assisted suicide by telemedicine and Washington state HB 1141 that expands the prescriber to PAs (physician assistants), advanced registered nurse practitioners and allows the lethal dose to be sent by mail or courier.

CONCLUSION

Our neighbor Canada is a cautionary tale about the inability to limit medically assisted suicide.

In a June, 2021 article in the Psychiatric Times titled “First, Do No Harm: New Canadian Law Allows for Assisted Suicide for Patients with Psychiatric Disorders , Dr. Mark Komrad chronicles the expansion of the 2016 MAID (medical aid in dying) law allowing medical euthanasia (the doctor directly administers a substance that causes death, such as an injection of a drug) and physician-assisted suicide for the terminally ill to expand to those “with nonterminal chronic illnesses and permitted euthanasia for those whose psychological or physical suffering is deemed intolerable and untreatable”.

Now, those Canadians “whose only medical condition is a mental illness, and who otherwise meet all eligibility criteria, will not be eligible for MAID until March 17, 2023″. (Emphasis added).

As a nurse with over 50 years of personal and professional experience in hospice, critical care, oncology, etc., I am willing to do anything for sick people– except kill them or help them kill themselves. These people deserve better!

Medically assisted suicide is a dangerous proposition that has proven to be impossible to strictly limit. It also corrupts the essential element of trust we must have in the health care system and makes suicide more attractive to vulnerable people as a way to solve life’s problems.

My 2000 Voices Magazine Article: Who Wants a “Defective” Baby?

This month, it was revealed that President Joe Biden “wants Congress to pass a law making abortions legal up to birth” after the US Supreme Court refused to temporarily block the Texas Heartbeat Law.

While talking to a friend about this, I remembered a 2000 Voices magazine article I wrote about why every unborn child deserves protection and she asked that I send it to her. Sadly, this magazine is no longer publishing.

This is the article I wrote that appears on my other blogsite that contains articles, op-eds, etc. that I wrote up to 2014, when I started this blog. The reflection at the end of this article was published by the National Down Syndrome Association and was-to my surprise-eventually reprinted in several other countries.

Voices Online Edition
Summer 2000
Volume XV, No. 2 – Jubilee Year

Who Wants a “Defective” Baby?

by Nancy Valko, R.N.

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.”

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results — until my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Downs.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment option could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclude that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and congratulated her on her obvious pregnancy. I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

Diane, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Downs, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and apologized for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

That I needed to worry less and celebrate more.


Sources:

1. “Prenatal Testing”, by Nancy Valko, R.N. and T. Murphy Goodwin, M.D., pamphlet, Easton Publishing Co.

2. “Doctors have prenatal test for 450 genetic diseases” by Kim Painter. USA Today, 8/15/97

3. Rothman, Barbara Katz. The Tentative Pregnancy. Revised, 1993. WW Norton and Co.

4. “Advances, and Angst, in a New Era of Ultrasound”, by Randi Hutter Epstein. New York Times. May 9, 2000.

Nancy Valko, R.N., a contributing editor for Voices, is a former president of Missouri Nurses for Life who has practiced in St. Louis for more than thirty years. An expert on life issues, Mrs. Valko writes a regular column on the subject for Voices.


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