Baby Tinslee Lewis Finally Goes Home after Beating the Texas 10 Day Rule

In 2019, Baby Tinslee Lewis was born prematurely with a rare heart condition called Ebstein’s anomaly and underdeveloped lungs at Cook Children’s Medical Center in Texas. She needed life support, including a ventilator to help her breathe.

The medical team began talking to her family soon after her birth about possible end-of-life care. Eventually, the medical team met with the hospital’s ethics committee and the committee agreed that it would be inappropriate to continue to treat Tinslee.

As HALO (Healthcare Advocacy and Leadership Organization) explains, this met the Texas 10-day rule for removing Tinslee’s life-sustaining treatment:

TEXAS 10-DAY RULE
  The 10-Day Rule is a part of the Texas Advance Directives Act (§166.046). Basically, this “rule” allows a hospital ethics committee to decide to remove life-sustaining treatment from a patient against the patient’s or family’s wishes. The patient or patient’s decision maker (usually family)    most likely, not professionals and are generally ill-equipped to defend their position. The committee follows with a written notice of its decision that life-sustaining treatment is “inappropriate.” Receipt of this notice marks the start of a ten-day countdown. “The physician and the health care facility,” states the law, “are not obligated to provide life-sustaining treatment after the 10th day after the written decision.” Finding another facility that will honor the patient’s/family’s treatment wishes and transferring the patient—at the expense of the patient and/or family—are monumental tasks which often prove impossible within the ten-day window.

The family was told they had until Nov. 22 to find a new hospital willing to take Baby Tinslee.

However, Tinslee’s family fought for her and they won a last-minute reprieve from a judge to stop the Texas hospital from taking the now 9 month old off life support against their wishes.

The hospital spokesperson stood by the hospital’s decision to end life support, saying:

“In the last several months, it’s become apparent her health will never improve,” and

“Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated.” and

“Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.

In July 2020, the hospital again wanted to take Tinslee off life support while Tinslee’s mother asked for another specialist to see her. The specialist recommended a tracheostomy to help her.

With help from individuals, lawyers and groups like Texas Right to Life and HALO (Healthcare Advocacy and Leadership Organization), Tinslee’s case was eventually taken all the way up to the Texas Supreme Court. Finally, this court ruled to keep Tinslee on life support. The US Supreme Court upheld the Texas courts decision.

Now, Tinslee has so steadily improved (see the pictures) that the hospital released her to go home to her family. She is now on a portable ventilator with a tracheostomy and home health care.

Texas Right to Life states:

“Tinslee’s success story shows that in the absence of an anti-Life countdown, families and hospitals can work together for the benefit of the patient. Tinslee has received excellent care from Cook Children’s Medical Center. It is with their efforts that Tinslee will now transition to home health care. Meanwhile, Texas Right to Life is committed to doubling our efforts in the Capitol and with our full-time patient advocacy team to combat and stop the deadly 10-Day Rule from destroying the lives of more vulnerable patients like Tinslee. “

CONCLUSION  

I have been writing about medical futility problems for decades, especially about Simon’s Law to protect medically vulnerable children and their parents from medical discrimination, including my own daughter.

We need to send a strong message that medical discrimination against medically vulnerable or disabled people of any age based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.

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.

Our “Covid” Christmas

My husband and I were excitedly looking forward to finally having all our blended family members to our home for Christmas this year but Covid 19 almost ruined it. We will forever remember it as the “Covid” Christmas.

We felt fortunate that one of our families was driving to Ohio for an early Christmas with their vaccinated in-laws before driving home in time for our Christmas celebration, especially after we saw other people around the country waiting in lines for hours to get a Covid test before the holidays. We were also glad that they decided to drive when we saw thousands of airline flights delayed or cancelled because of Covid, bad weather and staffing shortages.

However, it turned out that one vaccinated in-law in Ohio attended a large rock concert a few days before the Christmas celebration. Although he showed no symptoms at the time, our youngest grandchildren started to cough and get sick on the ride home.

Early on Christmas morning, the parents were notified that the in-law now tested positive and they tried frantically to get covid tests for themselves and the grandchildren, one of whom was recently diagnosed with asthma. But there were no covid testing kits available and the pediatric emergency room near them told the parents that they could not do a covid test unless the children were admitted.

After two days, they all finally got their covid tests and were negative.

They missed the Christmas party with the other relatives but celebrated with us grandparents a few days after Christmas and it was wonderful.

HOW COULD THE DEARTH OF COVID 19 TESTS HAPPEN ON CHRISTMAS?

As I wrote in my January 7, 2021 blog “When Can We End Lockdowns for Covid 19?”:

“the FDA (food and Drug Administration) approved the use of several rapid Covid 19 tests, some that can even be done at home. This can be a gamechanger with some experts saying that the massive distribution of rapid self-tests for use in homes, schools, offices, and other public places could replace harmful sweeping lockdowns with knowledge.

And as the FDA (Food and Drug Administration) itself has reported:  

“Since March 2020, the FDA has authorized more than 400 COVID-19 tests and sample collection devices, including authorizations for rapid, OTC at-home tests. The FDA considers at-home COVID-19 diagnostic tests to be a high priority and we have continued to prioritize their review given their public health importance.” (All emphasis added)

However in a December 21, 2021 interview, President Biden was said to “express some regret that he didn’t ramp up necessary supplies before the nation got hit with yet another winter coronavirus surge” and announced a plan for the government to “distribute 500 million free rapid in-home test kits in an effort to slow the spread of the virus” and admitted  that ““I wish I had thought about ordering half a billion [tests] two months ago”.

However, as reported on December 24, 2021 at webmd.com:

“President Biden has promised Americans that 500 million coronavirus tests will be available for free, but the kits won’t arrive for several weeks or longer”

and

“the Biden administration hasn’t yet signed a contract to buy the tests, and the website to order them won’t be available until January, according to The New York Times.

CONCLUSION

I have been writing blogs on the various aspects of the Covid 19 pandemic for almost 2 years and I am frustrated by the missteps, lack of accountability and the constantly changing rules that often seem to often be more based on politics rather than science.

We need to demand better from ourselves, our leaders and our country to become a healthier nation mentally, physically and spiritually.

What is a “Death Doula” and Why is Compassion & Choices so Interested?

Most people have heard of doulas, specially trained people who help pregnant women during pregnancy, labor, birth, and immediate postpartum by providing “emotional, physical, and informational support”.

My daughter used a doula for both of her children and was so happy with the results that she is considering taking the training to become a doula in the future.

But now, there are “death doulas” that have nothing to do with birthing.

As Wesley Smith wrote about in a 2014 article titled “Good Grief: Now It’s “Death Doulas”, there was an op-ed in the LA Times about the Hippocratic oath and the terminally ill by a journalist and medical professor who wrote:

“If we allow medicine to prolong life, should we also allow it to shorten life for the terminally ill?

We could, however, skirt the controversy entirely: What if we created another class of medical professionals known as death doulas, who could fill a gap between treatment doctors and hospice workers?” (All emphasis added)

But “death doula” idea continued and in 2017,  the “National End-of-Life Doula Alliance (NRDA) was formed and even more importantly in 2018:

“a special council within The National Hospice and Palliative Care Organization (NHPCO), the leading hospice and palliative care membership organization in the US, was held. The purpose of the special Council is to provide information and resources to its members, affiliated organizations, and the public regarding the role of end-of-life doulas.” (Emphasis added)

Unfortunately, while the NHPCO “opposes MAID (medical aid in dying) as “a societal option to alleviate suffering”, the American Academy of Hospice and Palliative Medicine (AAHPM) has had a position of “studied neutrality” on the issue of medically assisted suicide since 2007.

According to a New York Times June 2021 article “Death Doulas’ Provide Aid at the End of Life” , there are nearly 800 members in the National End-of-Life Doula Alliance with membership nearly doubling in the past year and increasing interest in training programs such as the International End-of-Life Doula AssociationDoulagivers, and the Doula Program to Accompany and Comfort.

Death doulas do not have to be medically trained and death doula training and certification programs can cost as little as the $189.00 holiday special online course at the International Association of Professions Career College for 6 weeks part-time.

According to the New York Times, death doulas “don’t get involved in medical issues” but rather, “they support clients emotionally, physically, spiritually and practically.” Prices for these services “range from $25 an hour on up, although many do it voluntarily.”

WHY IS COMPASSION & CHOICES INTERESTED IN DEATH DOULAS?

Last month, Compassion & Choices (the largest organization attempting to pass assisted suicide laws in every U.S. state) filed an amicus brief in the federal court case Full Circle of Living & Dying v. Sanchez in support of a lawsuit to protect “to protect the First Amendment free speech rights of death doulas in California.”

The plaintiff Full Circle of Living & Dying is described by Compassion & Choices “as a non-profit organization that provides death doula services and home funerals”.

The defendant in the Full Circle of Lining & Dying lawsuit is the California Cemetery and Funeral Bureau which issued a 2019 order to the death doula plaintiffs to:

“immediately discontinue advertising and operating as a funeral establishment until a license is issued by the Bureau” and “threatened fines of up to $5,000 if Full Circle continued to operate without a license.”

Compassion & Choices’ chief legal advocacy officer Kevin Diaz argues in the amicus brief that:

Full Circle “has a disclaimer on its website that they are not funeral directors, do not offer funeral home services, and do not operate out of a funeral home”; that “Full Circle does not need a physical location for its services and the cost of obtaining such a location far exceeds the non-profit’s small budget.”

and added that

“a ruling in favor of the California Cemetery and Funeral Bureau “will force most, if not all, death doulas out of practice.” (Emphasis added)

As Kim Callinan, the President and CEO of Compassion & Choices explains in her 2021 article “Medical Aid in Dying: The Role of Death Doulas” for the National End-of-Life Doula Alliance newsletter:

“Death doulas can play a key role in shifting end-of-life care from a paternalistic to patient-directed system by bringing non-judgmental support to patients and serving as their advocate. This is particularly needed for patients who would like the option of medical aid in dying. All too often, interested and eligible patients are unable to navigate the complicated, multi-step process to access medical aid in dying (aka medically assisted suicide); too many unfortunately die suffering. (All emphasis added)

CONCLUSION

Over more than 52 years, I have cared for many dying people, both personally with friends, my mother and daughter and professionally in cancer units, critical care and home hospice. The people I have cared for range from babies to the very elderly.

My interest in people with terminal or life-threatening illnesses started when I first became an RN in the late 1960s and saw people with terminal cancer routinely secluded in in a private room at the end of a hall.

I asked the more experienced nurses how I should approach these patients and if I should be cheerful or solemn.

These nurses said they didn’t know the answer either so I had an idea. I decided to go visit these patients after I finished my shift and just ask to sit down and speak with them. Many of these wonderful people told me how isolated and lonely they felt when friends and family members treated them differently and we would talk about what they wanted both before and after their expected deaths.

I shared what I learned with the other nurses and family members who were relieved to know how they could help.

Whether or not these people were in hospitals, institutions or at home, the goal was always to help them live as well as possible until death. It was imperative that these people felt loved, respected and cared for even when they seemed to be unconscious. I also saw that the person’s relatives and friends also needed understanding and support. It helped that I personally knew how hard it can be to lose a loved one.

I feel privileged to have cared for my loved ones, friends, patients and their families and I never witnessed an excruciatingly painful death or was tempted to help end a life because I knew how to help.

It will be interesting to see what happens in the Full Circle of Living & Dying v. Sanchez case but I know that no matter whether a person is physically healthy or terminally ill, assisting a suicide is never good healthcare!

Six Problems with Covid 19 Vaccination Mandates

When the Covid 19 vaccine was first authorized for emergency use in December, 2020, President-elect Joe Biden said that he wouldn’t impose national mandates to get vaccinated for Covid 19.

But on September 9, 2021 and in a televised speech, President Joe Biden announced a federal Covid 19 vaccination mandate affecting as many as 100 million Americans “in an all-out effort to increase COVID-19 vaccinations and curb the surging delta variant.”

Calling Covid 19 “a pandemic of the unvaccinated” and that “our patience is wearing thin” with the estimated 80 million Americans who have not been vaccinated, President Biden announced new rules that:

“mandate that all employers with more than 100 workers require them to be vaccinated or test for the virus weekly, affecting about 80 million Americans. And the roughly 17 million workers at health facilities that receive federal Medicare or Medicaid also will have to be fully vaccinated.”

and signed

“an executive order to require vaccination for employees of the executive branch and contractors who do business with the federal government — with no option to test out. That covers several million more workers.” (Emphasis added)

PROBLEM ONE

There are different rules for different groups people, leading to confusion and further divisiveness.

For example, while international travelers visiting the US must provide proof of vaccination before being allowed into the country, the hundreds of thousands of people illegally crossing our southern border and being released into our country are not required to have the Covid 19 vaccine.

What scientific justification is there for this?

PROBLEM TWO

Now the Biden administration just unveiled its new 490 page Occupational Safety and Health Administration’s (OSHA) “emergency temporary standard” that also requires companies with 100 or more employees to mandate that workers get vaccinated, or tested weekly and wear a face mask

But surprisingly, as a November 4, 2021Wall Street Journal editorial article titled “OSHA’s Vaccine Mandate Overkill notes:

“Separately, the Centers for Medicare and Medicaid Services issued a vaccine mandate for health-care facilities with no testing option.” (Emphasis added)

and

“According to a Kaiser Family Foundation survey last week, 37% of unvaccinated workers said they would leave if their employer required them to get a vaccine or be tested weekly.“(All emphasis added)

PROBLEM THREE

Firing unvaccinated employees in a tight labor market when so many employers are desperate to hire hurts not only employees but also businesses.

In addition, these vaccine mandate rules have led to vaccine refusal by some essential workers like police, garbage collectors and healthcare workers in cities like New York who then lose their jobs. This not only affects these workers and their families but also the delivery of these essential services to the populace.

PROBLEM FOUR

Religious or medical exemptions from taking the vaccine are often difficult to obtain.

For example, a hospital system in Arkansas maintains that the “majority of religious exemption requests cited the use of fetal cell lines in the development of vaccines” but counters that the “practice uses cells grown in labs to test many new vaccines and drugs, including common antacids and cold medications.”

Therefore, the hospital’s religious exemption form “includes a list of 30 common medications that used fetal cell lines during research and development” and asks employees to attest that they:

“truthfully acknowledge and affirm that my sincerely held religious belief is consistent and true” and that they won’t use the medications listed.” (Emphasis added)

PROBLEM FIVE

Now the CDC has announced emergency use authorization of Covid 19 vaccine for children 5-11. If mandated, what will that mean for schools and parental rights to refuse or consent to medical treatment?

PROBLEM SIX

So far, 68% of Americans have received at least one dose of a vaccine and 59% are fully vaccinated.

At the same time, at least 27 states so far have decided to take legal action against the new rules, claiming the mandate is an example of federal overreach and both “unlawful and unconstitutional.” And on November 6, 2021, a US federal appeals court temporarily halted President Biden’s COVID-19 vaccine mandate for businesses, citing potentially “grave statutory and constitutional” issues.

CONCLUSION

Unfortunately, the Covid 19 vaccination mandates have caused some severe divisions between those who have been vaccinated and and those who refuse to be vaccinated for various reasons.

My husband and I are fully vaccinated but some of our adult children are not. We encouraged them to take the vaccine but we have to respect their decision. We believe that people who refuse or are hesitant about the vaccine should not be vilified or treated as second class citizens.

We are all Americans and we need to work together.

And there may be hope on the horizon as new Covid 19 pills are being developed and showing promise with Pfizer’s pill said to be 89% effective for mild to moderate Covid 19 symptoms. Pfizer now plans to ask the Food and Drug Administration to authorize the pill’s use this month. Another Covid 19 pill from Merck & Co. was cleared for use in the U.K. this week.

These pills could be a gamechanger and help heal not only Covid 19 but also our fractured country.

Why “Living Wills” Are Not Working Well

In a stunning October 8, 2021 article titled “What’s Wrong With Advance Care Planning? in the prestigious Journal of the American Medical Association, three prominent supporters of “living wills” and other advance care documents admit that after 30 years of the promotion of such advance care plan (ACP) documents:

“The assumption that ACP will result in goal-concordant end-of-life care led to widespread public initiatives promoting its use, physician reimbursement for ACP discussions, and use as a quality measure by the Centers for Medicare & Medicaid Services, commercial payers, and others. However, the scientific data do not support this assumption. ” (Emphasis added)

Drs. R. Sean Morrison, Diane E Meier, and Robert M. Arnold are prominent doctors and ethicists at prestigious institutions who have long promoted the advance care documents that are asked about when people enter hospitals, nursing homes, long care facilities, etc.

I have been writing about such documents and their uses and hazards for decades.

ACPs were promoted as essential to document a person’s healthcare wishes like Do Not Resuscitate orders and forgoing interventions like feeding tubes and ventilators in the event that the person is unable to speak for himself or herself. Many such documents also designate a trusted friend or relative to assist in the potential future decision-making process.

All adults have been encouraged to make such documents regardless of their health status because it was assumed that such ACPs would lead to higher quality care at the end of life.

But, as the authors now admit: “The inability of ACP to achieve its desired outcomes represents the gap between hypothetical scenarios and the decision-making process in clinical practice settings.” (Emphasis added)

After 52 years of experience working in ICUs, oncology (cancer), dialysis, hospice and home health as well as caring for relatives and friends, I wholeheartedly agree with the authors that:

“Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid. Patients’ preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden (eg, need to provide personal care, time off from work, emotional strain, out-of-pocket or noncovered medical costs), which change over time.” (Emphasis added)

WHAT DOES WORK?

The authors point to the patient having a trusted person in advance to act as a surrogate decisionmaker and improving the communication with healthcare providers in real time. They also point to:

“training clinicians and preparing patients and families to engage in high-quality discussions when actual (not hypothetical) medical decisions must be made is needed to achieve the outcomes that ACP has not.” (Emphasis added)

However, pitfalls still remain.

Patients and their decisionmakers do need accurate information about their conditions and potential treatments.

However, as I found as a nurse, patients and their surrogate decisionmakers often have negative preconceptions (often reinforced in the media) about treatments such as cardiopulmonary resuscitation, ventilators, feeding tubes, etc.

Unfortunately in hospital situations, the advance care plans with the common DNR (do not resuscitate) directive are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances. And some healthcare institutions have medical futility policies that allow doctors to overrule the person’s decisionmaker.

In addition, we have well-funded organizations like Compassion and Choices that not only work to get assisted suicide laws passed in every state but also promote their own advance directive to allow the lethal “healthcare option” of VSED (voluntary stopping of food and water) to ensure death.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward and can relieve any guilt in the surviving relatives.

CONCLUSION

I was surprised but very pleased to read that the three prominent doctors writing the article “What’s Wrong With Advance Care Planning?” after years of promoting “living wills” and other end of life documents.

But, in the end, the real answer is a return to the traditional medical ethics of “First, do no harm”, a presumption for life and excellent, unbiased information.

That is why my husband and I made our own healthcare directives to require full information about all options, risks and benefits before making medical decisions.

And, most importantly, that we believe that “quality of life” is something to be improved, not judged.

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.


**Women for Faith & Family operates solely on your generous donations!

The Powerful Effect of the US Supreme Court’s Decision Refusing to Block the Texas Heartbeat Act

When the Texas Heartbeat Act was signed into law by Governor Gregg Abbot in May 2021 to abolish elective abortions as early as six weeks (when the unborn child’s heartbeat is “detectable using methods according to standard medical practice”), abortion rights supporters were furious and began challenges to the law.

But on September 2, 2021 and surprisingly, the U.S. Supreme Court ruled 5-4 against a request from pro-abortion groups to temporarily block enforcement of the pro-life law.

Pro-abortion groups and almost all mainstream media vigorously denounced the decision and groups like the American Civil Liberties Union, Planned Parenthood, Whole Woman’s Health, and other abortion groups were ready to mount more legal challenges to the law.

Most recently, now a Texas Judge has issued a temporary restraining order barring Texas Right to Life and “100 unnamed individuals” from suing Planned Parenthood, writing that the Texas Law creates a “probable, irreparable and imminent injury” to Planned Parenthood if sued by the nonprofit Texas Right to Life and others.

At the same time, pro-life advocates continue to reach out to pregnant women offering resources and emotional support to help them and their babies while Texas lawmakers had already budgeted in the spring for $100 million specifically to help pregnant and parenting mothers and babies

But while even the Wall Street Journal raised legal questions about enforcement of the law by civilians and the exclusion of rape or incest exceptions, the Supreme Court’s decision to refuse to block the Texas Heartbeat Act (and the torrent of national publicity surrounding the decision) forces a recognition of the the humanity of the unborn baby and the fact that even the Mayo Clinic recognizes: the heart begins to beat at 6 weeks.

Unfortunately, many people are unaware of this fact and Planned Parenthood continues to deny this fact.

MY EXPERIENCE WITH ROE V. WADE

I was a young nurse working in a critical care unit in 1973 when the U.S. Supreme Court decision Roe v. Wade, legalized abortion for any reason in the first trimester of pregnancy.

When other doctors and nurses asked my opinion about the decision, I said I was surprised and horrified. Some of the nurses and doctors angrily disagreed with me and asked what I would do if I were raped and pregnant.

I said I would be upset about the rape but also that I couldn’t deliberately end another human life, born or unborn. That was medical ethics.

A few years after the Roe v Wade decision, I was married and pregnant with my first child. I loved the standard prenatal development pamphlet I was given but I couldn’t help but think about how painful this pamphlet could be for a woman who had aborted before becoming pregnant with a wanted child.

I decided that when I finally had some time, I would volunteer at our local Birthright to help women and their babies.

With my subsequent pregnancies, my older children were obsessed with the development of their unborn brother or sister and asked what the baby had or could do almost every week of the pregnancy. It was touching to see how excited they got with each new phase of the baby’s development.

When one of my daughters became pregnant and unwed at age 18, she said she could never have an abortion because she knew so much about prenatal development.

Recently, I was delighted to view the “Meet Baby Olivia” video, a beautiful and “medically accurate, animated glimpse of human life from the moment of fertilization” produced by Live Action. I highly recommend this video and sharing it widely.

CONCLUSION

Until Texas, other state heartbeat laws have been blocked in court. The Texas Heartbeat Act is facing more legal challenges but it has already changed minds and hearts in Texas: An April poll by the University of Texas-Austin found that 49 percent of Texans support making abortions illegal after six weeks of pregnancy, while 41 percent oppose it.

Education about abortion and outreach to help women struggling with an unexpected pregnancy can save lives!

An Unexpected Recovery and What We Can Learn from It

When 28 year old Jacob Haendel was rushed to an emergency room in Massachusetts four years ago, the doctors thought he was having a stroke but brain scans showed something very different. Instead, his brain scans showed that his “brain seemed to be unplugging itself from the rest of his body”. One doctor described it as “The wires weren’t sending signals from place to place.”

The doctors were unsure what was going on until Jacob revealed that he had been doing drugs, mostly opioids, until he turned to street heroin. The medical team thought he might have ingested a toxin which led to their diagnosis of a very rare condition called: Toxic Acute Progressive Leukoencephalopathy. Only a few dozen people had ever been diagnosed with this.

Six months later, Jacob deteriorated to what the doctors thought was a “vegetative state” and completely unaware of himself or his surroundings. He was sent to an extended care facility on a ventilator to breathe and a feeding tube. Eventually, he was put in hospice and by Christmas, his family told that he probably would die in a couple of days. Jacob’s father whispered to him that it was “ok to let go”.

But Jacob didn’t die and slowly his brain started to sputter back to life.

The first sign was a small twitch in his wrist. Some thought this meant nothing but his family thought otherwise.

A few weeks later, everyone was stunned when Jacob started moving his tongue and his eyes, “almost imperceptibly at first, but enough to use a letterboard to spell out a message he’d been desperately trying to send for almost a year. His message was I can hear you. (Emphasis added)

As Jacob began communicating, the doctors realized that he had not been unconscious but rather awake the whole time. Jacob remembered nurses calling him “brain dead” and that visits slowed over time.

In a July 25, 2021 CBS Sunday Morning tv segment, Jacob told CBS correspondent Lee Cowan that “I couldn’t express anything to anyone. No one knew what was going on in my head, and I just wanted someone to know, like, that I was in there.”

He also said that he talked to himself a lot and felt pain. Jacob also revealed that “he would do math problems in his head just to help keep himself from the guilt that his drug use has caused all of this.”

Jacob’s mother had died of breast cancer and Jacob said he started using drugs to cope.

Jacob’s road to rehabilitation has been long and still ongoing. However, Jacob has “come back with such a profound understanding of what a second chance really means. “I am an improved Jake,” he said. “And I’m a happier Jake. I don’t want to give up.”

Although Jacob still has limitations of speech and movement, he now was a website and writes updates.

WHAT WE CAN LEARN FROM JACOB’S STORY

Over my years in mostly critical care nursing, I spoke to all my patients patients-regardless of a diagnosis of coma, “vegetative state”, etc.-as if they were totally awake and explained everything I was doing as well as the time and date, visitors who came, etc.

I also closely watched for any sign of voluntary movement or reaction. Like Jacob, even almost imperceptible movement could be a sign of awareness and I encouraged my patients to repeat the movement.

I was often teased and asked if I spoke to my refrigerator too but the teasing stopped when some of these patients started to respond or even recovered. Some of them later related what they heard and/or felt when they were assumed to be unaware. My point was that speaking empathetically to all our patients was a matter of respect that could even help them get better.

Hopefully, Jacob’s story will be an encouragement for all healthcare providers as well as people with severe brain injuries and their families.

CONCLUSION

But Jacob has another big message for every one of us in our daily lives: simplicity.

In Jacob’s own words:

“My life was never a walk in the park, but I never truly appreciated how important the simplicities of life are until I began my journey to recovery. My reasoning for this word is multi-focal just like my case. The only word that can accurately describe my case is “complex” and I am un-ironically striving for just the opposite; simple. After surviving and overcoming locked in syndrome, all I want are the simplicities in life; things like talking, connecting with friends and family, enjoying solid foods, breathing on my own, going outside instead of being locked in a hospital, being able to feed myself and even taking a walk in the park. All of these simple things I took for granted are now goals I am working towards being able to enjoy again”

Especially at a time of such discord in our society now, we all need to remember and celebrate the so-called “little things” that make us grateful for our own precious lives.

Rethinking Brain Death and Organ Donation

I have been writing for many years about the implications of brain death, the lesser known “donation after cardiac/circulatory death”, diagnosed brain death cases like the supposedly “impossible” prolonged survival and maturation of Jahi McMath, the unexpected recoveries like Zack Dunlap’s and even that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed.

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

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

The Uniform Declaration of Death Act (UDDA) was drafted in 1981 by a President’s Commission study to brain death and approved by both the American Medical Association (AMA) and the American Bar Association (ABA). It was intended to provide a model for states to emulate.

It offered 2 definitions of when a person could be declared legally dead to align the legal definition of death with the criteria largely accepted by the medical community:

“Irreversible cessation of circulatory and respiratory functions (the traditional definition of death); or

Irreversible cessation of all functions of the entire brain, including the brain stem (brain death)” (Emphasis added)

The UDDA in some form has since been adopted by all US states and the District of Columbia.

THE PUSHBACK TO REVISE THE US UNIFORM DETERMINATION OF DEATH ACT (UDDA)

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

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

These experts’ objections to those proposed revisions are that:

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

And these experts further state that:

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

CONCLUSION

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

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

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

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

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

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

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