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?

WHILE PRO-ABORTION VIOLENCE AGAINST PRO-LIFE CRISIS PREGNANCY CENTERS INCREASES, THE WORLD HEALTH ORGANIZATION SAYS CONSCIENCE RIGHTS REGARDING ABORTION MAY BECOME “INDEFENSIBLE”

We have been witnessing the rage and misinformation dividing Americans after the outrageous leak of Supreme Court Justice Alito’s draft decision on the Dobbs v Jackson Women’s Health Organization returning abortion laws back to the states since it was reported on May 2, 2022.

Many pro-life crisis pregnancy centers are now being attacked with paint, firebombs, etc. by pro-abortion groups like “Jane’s Revenge”. But as Nicole Ault of the Wall Street Journal points out:

“No woman is forced to go to one of these clinics, where more than 10,000 licensed medical professionals worked or volunteered as of 2019, according to the pro-life Charlotte Lozier Institute. In addition to providing ultrasounds and pregnancy tests, the centers help women get supplies and counseling.”

But then, on June 8, 2022 and during the night, U.S. Marshals protecting the home of Supreme Court Justice Brett Kavanaugh from illegally picketing protesters apprehended an individual with a gun and a knife who readily admitted that he was there to kill Justice Kavanaugh in response to the leaked draft opinion that indicated the Court might be preparing to overturn Roe v. Wade.”

Now, Jane’s Revenge has issued a call to ‘riot’ against the Supreme Court if it does overturn Roe v. Wade.

Their flyer “DC CALL TO ACTION NIGHT OF RAGE” declares “THE NIGHT SCOTUS OVERTURNS ROE V. WADE HIT THE STREETS YOU SAID YOU’D RIOT. TO OUR OPPRESSORS: IF ABORTIONS AREN’T SAFE, YOU’RE NOT EITHER.’ JANE’S REVENGE.” (Emphasis added)

THE WORLD HEALTH ORGANIZATION ON ABORTION

On March 8, 2022, the World Health Organization (WHO), the international body responsible for public health and part of the United Nations involved in many aspects of health policy and planning, issued its’ “Abortion Care Guideline.

In the Guideline, WHO recommends “the full decriminalization of abortion” and calls conscientious objection to abortion a major obstacle to making abortion freely available.

According to the WHO recommendations:

“If it proves impossible to regulate conscientious objection in a way that respects, protects and fulfils abortion seekers’ rights, conscientious objection in abortion provision may become indefensible.” (Emphasis added)

CONCLUSION

Personally, when my daughter Karen, born with Down Syndrome and a severe heart defect, died at 5 1/2 months in 1983, my grief was substantially lessened by donating Karen’s clothes, formula, etc. to our local Birthright organization, one of the many pro-life organizations providing help to pregnant women.

Since Karen and as a nurse and mother, I have been able to help advocate for distressed mothers and their families, children and adults with disabilities and, best of all, my own daughter who found she was pregnant in her first year of college and gave birth to my first grandchild.

And I know that the WHO is absolutely wrong in calling conscientious objections to abortion “indefensible”. Conscience rights are critically important for all of us, whether or not we are healthcare providers.

As I wrote in my December 13, 2019 blog “Are We Witnessing the Coming Extinction of Conscience Rights?”:

“With the current support of a predominantly sympathetic mainstream media, well-funded and politically active groups like Planned Parenthood and Compassion&Choices are also putting pro-life health care providers and their supportive institutions in grave danger of becoming an endangered species in law, politics and health care.

If this happens, our health care system will radically change-especially for the unborn, the elderly and people with disabilities.

When dedicated and compassionate people are denied entry into the health care professions because they refuse to deliberately end lives, harassed and/or fired when they refuse to participate in a deliberate death decision and efforts to make religiously based healthcare institutions to allow lives to be ended by “choice”, will any of us ever be able to trust our healthcare system when we need it the most?” (Emphasis added)

THE TRAGIC DIVIDE ON THE ROE V. WADE ABORTION DECISION

It has been almost physically painful to watch the tidal wave of rage and misinformation dividing Americans after the outrageous leak of Supreme Court Justice Alito’s draft decision on the Dobbs V Jackson Women’s Health Organization returning abortion laws back to the states.

But this is not the first time I saw such division about abortion.

I was a young intensive care unit nurse when the 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.

How wrong I was!

As I wrote in my 2019 blog “Roe v. Wade’s Disastrous Impact on Medical Ethics” , it wasn’t until the 1982 Baby Doe case and my daughter Karen’s birth and death opened my eyes and changed my life.

HARD TRUTHS ABOUT ABORTION

Because I am a nurse and mother, I have personally learned some hard truths about abortion and the abortion industry. Here are some of my experiences.

A young relative came to me after visiting a Planned Parenthood clinic for a suspected sexually transmitted disease. She said the clinic told her that she didn’t have an infection but the girl continued to get worse-and scared.

I arranged for her to see my own pro-life ob-gyn who discovered that the infection had damaged her cervix so much that part of it had to be removed and, even worse, she would probably have to have her cervix sewn shut until delivery if she became pregnant in the future.

Learning that Planned Parenthood had apparently missed the diagnosis, my doctor never charged for his services.

KNOWLEDGE IS ESSENTIAL

I will never forget the Christmas day my 18-year-old daughter told me she was pregnant.

We talked for hours, and I told her that I would support any decision she would make-except abortion.

She laughed and told me that abortion was not an option because she “knew too much”, especially from the prenatal pamphlets I showed my children with each pregnancy. They all were excited about how their brother or sister was developing and asked almost daily what their unborn sibling was now able to do.

My first grandchild is now 23 years old and has a loving family who allows us to be part of her life.

And we know even more now about pregnancy, as I wrote in my 2019 blog “An Amazing Video of a Living, First Trimester Unborn Baby” . The video shows an approximately 8 week old unborn baby moving its’ tiny head and limbs remarkably like a newborn baby. Unfortunately, the video was both heartbreaking and beautiful since this little one was developing outside the mother’s womb (ectopic pregnancy) and had to be removed surgically. He or she could not survive for long but this recognizable baby was obviously not a “clump of cells”!

POST-ABORTION TRAUMA IS REAL

Many years ago when I worked in home health and hospice, I cared for a very cranky, elderly woman I will call “Rose” who had rejected all the other nurses in our agency. Even her own doctor had problems with her and told me that he could not understand why she was even still alive because her end stage congestive heart failure was so severe. Part of my assignment was to measure her abdomen and legs to adjust her diuretics (water pills).

As I got to know Rose over a few visits, she softened towards me and began telling me about her life. But one day, while I was measuring her abdomen, she burst into tears and told me she hated looking 9 months pregnant because of the fluid retention in her abdomen. Rose said she knew it was God punishing her for the abortion she had 60 years before!

Rose had never told anyone, not even her late husband, about the abortion she had before marrying him. She felt that baby was the boy she never had but she didn’t feel worthy to even name him. She also told me that she knew she had committed the “unforgivable sin” and was afraid to die because she would be sent to hell. My heart went out to this woman who was suffering so much, more emotionally than even physically.

We talked for a long time and in a later visit about forgiveness and God’s love. I told her about Project Rachel, a healing ministry for women (and even men) wounded by abortion. I gave her the phone number and offered to be with her to meet a counselor or priest but she insisted that my talking with her was enough to help. I felt it wasn’t but she seemed to achieve a level of peace and she even started smiling.

I wasn’t surprised when Rose died quietly and comfortably in her sleep about a week later.

OFFERING HELPFUL INFORMATION IS CRUCIAL

In 1989, I had just started working as an RN on an oncology (cancer) unit when we discovered that one of our patients had CMV (Cytomegalovirus).

One of our nurses was pregnant and tested positive for the virus. Her doctor told her how her baby could die or have terrible birth defects from the virus and he recommended an abortion.

“Sue” (not her real name) was frantic. She had two little girls and worked full time. She said she didn’t know how she could manage a child with serious birth defects.

I told her that it was usually impossible to know if or how much a baby might be impaired before birth. I also told her about my Karen who was born with Down Syndrome and a critical heart defect and died at 5 months. I told her that I treasured the time I had with her and later babysat children with a range of physical and mental disabilities.

Most importantly, I also told her that I would be there to help her and her baby.

“Sue” decided against abortion and told the other nurses what I said.

The other nurses were furious with me and said if the baby was born with so much as an extra toe, they would never talk to me again.

But slowly, the other nurses came around and also offered to help Sue and her baby.

In the end, we all celebrated when Sue had her first son who was perfectly healthy!

CONCLUSION

Many people don’t understand is that being pro-life isn’t just being against abortion, infanticide and euthanasia. What being pro-life really means is truly caring about all lives, born or unborn.

What I have found most helpful is a  sincere interest and willingness to help when encountering people struggling with an abortion decision for themselves or someone close to them.

Why talk about abortion? Because we never know who may need to hear the truth and we need to help heal the tragic divide in our nation by our example.

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.


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