A Very Special 6th Birthday Party

Recently, I was invited to a 6th birthday for a special boy.

“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.

John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.

John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.

I was called about John to help with information and support.

At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.

However, John surprised us all by getting better and going home. He was tough!

It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.

When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.

John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.

CONCLUSION

When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.

But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.

I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.

I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.

Too often, people assume that a child with special needs is automatically a family tragedy.

The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.

And, of course, faith.

 

 

Lessons from the Victory against Assisted Suicide in Maryland

In a dramatic end, the Maryland Senate was deadlocked in a 23-23 on their physician-assisted suicide bill when it came time for the last senator to vote on March 27, 2019.

Sen. Obie Patterson decided not to cast a vote which effectively killed the bill that needed a majority vote to pass.

Sen. Patterson told reporters that “I researched it, I talked with folks and my decision today was not to cast a vote. But I think I did my job. I did not relinquish my responsibility to thoroughly review all of the concerns I had about the bill. At the end of the day, I felt I could not cast a vote.”

This fourth attempt in Maryland to pass a physician-assisted suicide bill had just passed in the Maryland House of Delegates following “an intense and emotional debate that brought some lawmakers to tears”.

Although there was testimony on both sides with many personal stories, a Goucher College poll of people in Maryland showed 62% of those polled supported “allowing terminally ill adults to obtain medication to end their lives”. The Maryland State Medical Society that previously opposed assisted suicide bill had now changed its stance to “neutrality”.

Kim Callinan, CEO of the Compassion & Choices organization that promotes such legislation throughout the US had said that “with baby boomers beginning to reach retirement age, they are dealing with deaths of their parents and peers, causing them to rethink their views on death experiences allowing terminally ill adults to obtain medication to end their lives.”

Disability advocates were forced to wait to testify until all witnesses in favor of the bill testified, effectively blocking those advocates who had to leave.

LESSON ONE: DON’T GIVE UP EDUCATING  LEGISLATORS AND THE PUBLIC ON THE FACTS AND DANGERS OF ASSISTED SUICIDE

Although it seemed that the bill would pass in the Senate, all the efforts by disability advocates, pro-life people, medical professionals, concerned Maryland residents, etc. to write, speak and even march about the facts and dangers of physician-assisted suicide apparently had an effect.

When the bill was sent to a Senate committee to evaluate before being sent to the entire Senate for final passage, members of the committee now had reservations about the assisted suicide bill itself. Committee chairman Senator Bobby Zirkin said the bill as introduced to the committee was “flawed to its core”, even though he said he didn’t want to stand in the way of terminally ill people “who are truly, truly at the end of their life and out of treatment options.”

The senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide, and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

Kim Callinan, CEO of Compassion & Choices said “the new drastically revised version of this bill includes troubling amendments that we know from our experience in other states will make the bill nearly impossible for patients to access.”

But as I noted in my previous blog on the assisted suicide bill, the Maryland Against Physician Assisted Suicide coalition correctly noted that even with the revisions, the bill “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

After the bill died in the senate, one senator said he would sponsor yet another assisted suicide bill sometime in the future.

LESSON TWO: REVIEW THE RESULTS

As the Baltimore Sun article on the defeat of the assisted suicide bill noted:

“Some senators who voted against the bill recalled the General Assembly’s action a few years ago to abolish the death penalty — in part on the grounds that life is precious, even the life of a convicted criminal.

Sen. Michael Hough, a Frederick County Republican, said that his vote in favor of keeping the death penalty has haunted him. He pledged to himself that if he ever faced a vote like that again, “I would err on the side of life.”

Others questioned the logic of allowing doctors, who they see as people who save lives, to participate in a process that leads to death.

“There are no do-overs in this type of law,” said Sen. Bryan Simonaire… “Doctors have and will continue to make mistakes and miscalculations. They are humans. Once a life is taken, it is final.” (All emphasis added)

We may not always know what resonates with a legislator charged with representing his or her district but it is an awesome responsibility to make laws involving life or death decisions. That decision should not just be based on polls or horrific fears about death.

LESSON THREE: REACH OUT TO ALL GROUPS AND PEOPLE

None of us who oppose assisted suicide has the power, money or media support that Compassion and Choices has. But when we band together and use all our personal stories as well as the moral, legal, disability and medical perspectives against assisted suicide, we can win state by state and even educate the public nationally.

Our goal should not only be about defeating assisted suicide and upholding truly ethical healthcare but also to offer hope and support to improve the lives of all people experiencing suicidal despair, whether or not they are terminally ill.

 

 

The Most Important Thing I Told a Maryland Legislator

I just recently returned from a trip to Maryland where Jack Ames of Defend Life asked me to speak to various groups, hopefully including legislators, about opposing a current physician-assisted suicide bill in the Maryland legislature. The Maryland “End of Life Options” bill was, as usual, based on the first physician-assisted suicide law passed in Oregon with a few additional loopholes.

I was able to speak to many groups during my trip but unfortunately, I could not be scheduled to speak at the legislature’s committee meeting where people from both sides of the issue were able to speak.

However, one of the Defend Life people and I went to the statehouse to see if we could get in to talk to some legislators personally. We were only able to get to speak to one legislator and he was considered to be on the side of passing such a bill. We were told we only had 5 minutes to talk to him.

We were there for much longer.

We talked about our personal experiences, especially about my 30 year old, physically healthy daughter Marie who killed herself after a 16-year struggle with substance abuse using an assisted suicide technique she learned after reading pro-assisted suicide advocate Derek Humphry’s book Final Exit.

I told him about Marie’s death which was horrific instead of peaceful and that was like an atom bomb dropped on our family. I talked about the reality of suicide contagion which led two people close to Marie became suicidal but who were able to be saved. We talked about the increasing epidemic of suicides we have now  and how seductive is the message that killing ourselves can solve problems like not wanting to be a burden on our families. That is what my daughter told me and one of the biggest reasons given by people who have resorted to physician-assisted suicide.

I also told him about at least six problems with physician-assisted suicide laws that most legislators-and the public-don’t know but that are inherent in physician-assisted laws. These include such problems as the total immunity for doctors and the secrecy involved, mandatory falsification of physician-assisted suicide death certificates and the obvious medical discrimination between treating suicidal people who are physically healthy and suicidal people who are considered terminally ill and seeking physician-assisted suicide.

I also told him about my experiences as a nurse with suicidal people-some of whom were terminally ill-and how (except for my daughter) they all changed their minds with listening, support and referral to a mental health specialist. I also told him about a UCLA project started when California legalized physician-assisted suicide. The project offered an intensive intake process for patient requesting physician-assisted suicide conducted by trained psychotherapists and social workers instead of physicians and offering help and support for any needs the patient might have. Not only did the project show that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss”, but also that “only” 25% of patients went on to commit physician-assisted suicide.

When you combine this with the fact that an admitted 1/3 of terminally ill Oregon patients who obtain the lethal overdose for assisted suicide never take it and with no follow-up as to whether the diagnosis was wrong, people changed their minds or even what happened to the dangerous lethal medication in the home etc., it is obvious that lethal mistakes are being made.

THE MOST IMPORTANT THING I TOLD THE LEGISLATOR

However, what seemed to be the most important point that stunned the legislator was telling him that if he voted for the physician-assisted suicide bill, he would have to personally shoulder the responsibility for the lives subsequently lost that obviously could have been saved.

I told him that like other ethical medical professionals, my most profound fear was harming or worst of all killing a patient, however inadvertently. I told him that despite my decades of nursing, I always knew I would have to leave my profession if such a tragedy happened because I would be devastated and lose my confidence in my abilities.

I told him that now with the facts we gave him, it was up to him to vote responsibly and hopefully share our information with others.

CONCLUSION

Most people assume that legislators are always lawyers who carefully read and understand legislation before voting. Wrong!

And most people don’t understand that most legislators rely on lobbyists for their information. Well-funded groups like Compassion and Choices are able to afford lobbyists, activists, access to sympathetic media outlets, etc. that promote their physician-assisted suicide agenda while other groups like pro-life groups and disability advocates have to rely on passionate volunteers.

Years ago, a legislator here in my home state of Missouri said he felt his constituents were against a certain piece of legislation. Why? Because he said he had received 4 letters!

This was before the internet has made it easier to contact our representatives but this shows how powerful our individual efforts can be.

We need everyone to speak out and speak up, especially when it comes to dangerous legislative bills like physician-assisted suicide.

 

 

 

“Life is Worth Living, Even if It is Painful and Short”

I was greatly moved by a December 21, 2018 op-ed in the Wall Street Journal by Gayle Somers titled “Life Is Worth Living, Even if It Is Painful and Short” with the subtitle “My son’s addiction caused great suffering and ended with a fatal overdose. I’ve never regretted his birth”

In this op-ed, Ms. Somers told the story of her son’s birth and eventual death 33 years later from an accidental overdose after a 14 year battle with drug addiction. That resonated with me since I lost my 30 year old daughter Marie to suicide using an assisted suicide technique after a 16 year battle with addiction.

But it was Ms. Somers’ wonderful statement “I’ve never regretted his birth” that caused me to write a letter to the editor that was published today:

“As someone who has lost a daughter to suicide and has also lost another daughter and a grandson to medical conditions, I really appreciate and agree with Gayle Somers’ op-ed “Life is Worth Living, Even if it is Painful and Short” (Dec. 22). My first daughter died at 30 after struggling with substance abuse for 16 years.

As a nurse and friend of bereaved parents, I also have never met a parent or grandparent who regretted the birth of his or her lost child.

I once was asked for advice by a bereaved mother after her 2-year-old son with Down Syndrome died unexpectedly. She wanted to know what might help her accept her son’s death with a hopeful outlook. From my own personal experience, I told her that solace comes when a lost child’s life rather than his death becomes the most important fact about him. The love itself never dies.

Nancy Valko

St. Louis

CELEBRATING LIFE

Ms. Somers also wrote in her op-ed that:

“These days pregnant women can take prenatal tests to learn about genetic defects their babies may have. Sometimes I’m grateful that no test allows you to see how a child’s life will unfold. All parents instinctively shrink from the excruciating expectation of a child’s suffering and, inevitably, their own suffering.

Some parents are so frightened at the prospect of raising a child with a genetic abnormality that they end the child’s life in the womb. While I understand this temptation—to spare the child the struggle, to spare yourself the pain—reflecting on the time I spent with my son convinced me that life is worth it despite the suffering.”

This also resonated with me since I lost my 5 1/2 month old daughter Karen who had Down Syndrome and a severe heart defect just before her scheduled surgery in 1983.

Two years later, I was pregnant again and the doctor strongly urged me to have an amniocentesis to test for Down Syndrome. I refused not only because of the unnecessary risk to the baby but also because I knew I would love this baby regardless of any condition or lifespan. Because of Karen, I was not afraid to welcome this baby.

Happily, my daughter Joy was born healthy and now has a baby daughter of her own to share with us.

CONCLUSION

Over the years, I’ve been inspired by many parents who have lost children of all ages. Some of these children died of natural causes and some from medical malpractice, tragic accidents, suicide and even murder.

The pain of losing a child is naturally devastating, especially at first. However, I have seen those same parents also rise up and honor those children’s lives by helping others or fighting injustices.

I consider Ms. Somers one of those inspiring parents, especially how she ended her op-ed by writing:

“Even knowing what we know now about how our children’s lives would end, all of us would choose life, no matter how short, no matter how painful. We welcomed our children into our families. We gave them names, and then, one day, we began to learn how to do what all parents must do—love without limits, comfort during the pain, not shrink from the suffering, give thanks for the gifts our children are to us.”

 

 

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as definite, but extremely limited, awareness of self or environment, and limited means of communication. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention 1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

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

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

 

 

 

 

 

Caught in Social Media Bias

I have been hearing about Facebook blocking or restricting “conservative” content on the internet. Recently, there was a National Right to Life News story about a Republican judge from my state of Missouri who could not “boost”  (pay for reaching a wider audience) a pro-life video of his nephew overcoming a life-threatening birth defect detected prenatally. Facebook’s stunning rationale?

“Your Ad wasn’t approved because it doesn’t follow our Advertising Policies. We don’t allow ads that contain shocking, disrespectful or sensational content, including ads that depict violence or threats of violence.” (Emphasis added)

A short time ago, I saw that a shared written item from #NoAbortionCoercion on protecting conscience rights for healthcare providers on our National Association of Prolife Nurses (NAPN) Facebook page  was not allowed to be “boosted” because it also conflicted with Facebook’s advertising policies.

The item read:

“Conscience rights of healthcare providers must always be protected. As nurses, the government is constantly telling us what we must and mustn’t do when caring for our patients. There can be no coercion to act against our consciences. Compassion and love is and will always be at the center of what we do. #NoAbortionCoercion”

Our NAPN media nurse says that this has happened before and he has been told that some ads are considered “political”.

However, NAPN is a 501C3 educational organization, not a political one. We have only volunteers, not salaried employees. We do not endorse candidates.

I am a spokesperson for NAPN and as our NAPN website states :

“NAPN is a not-for-profit organization uniting nurses who seek excellence in nurturing for all, including the unborn, newborn, disabled, mentally and or/physically ill, the aged and the dying. Beginning in 1973, when abortion was accepted as a legal alternative to pregnancy, healthcare professionals have been confronted by an ever-increasing number of morally challenging life issues. The list of ethical dilemmas continues to grow: in vitro fertilization, cloning, fetal experimentation, organ donation and transplantation, nutrition and hydration, patient rights, certain sterilization practices, looming rationing of medical resources, assisted suicide and euthanasia, and stem cell research with its promise of advances in the treatment of disease. No one is more affected by these morally challenging issues than the nurse and the pressure to utilize unethical techniques and practices in the care of patients is increasing. Through a united, educational, professional organization such as NAPN, nurses can, in good conscience, deliver the best possible patient care while preserving, protecting and defending respect for human life.”

NAPN also helps to support nurses facing conscience rights legal battles and even offers a $1000 pro-life scholarship award each year to the school of the winning nursing student based on his or her essay, academic achievements, demonstration of leadership and participation in pro-life activities. Applications for the next 2018-2019 award will be posted soon on our website and Facebook page.

CONCLUSION

Of course, NAPN is only one of many groups and individuals complaining about apparent bias against pro-life or conservative groups on social media.

Facebook founder Mark Zuckerberg testified in April before the US Congress that he had no knowledge of bias against conservatives but as Lifenews.com and other news sources have found, there is conservative speech being suppressed not only by Facebook but also Twitter, Google and YouTube. We need more than just reassurances that improvements will be made while the problems are still ongoing.

With so much of the mainstream media enthusiastically supporting abortion, assisted suicide and other deliberate death decisions while ignoring or negatively reporting on issues like conscience rights and alternatives like crisis pregnancy centers, it is especially important for the public to be able to access social media sites like NAPN’s for real facts.

In today’s volatile legal and cultural climate, we need all available information-not a double standard.

An “Acceptable” Prejudice

This week, Fox News had a story  about John Cronin, a young man with Down Syndrome who, with his father, founded and runs what is now a $4 million dollar company called Crazy Socks.

This story follows the February announcement that the new Gerber Spokesbaby is Lucas Warren who had Down Syndrome. The famous baby food company stated that Lucas “exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby.” (Emphasis added)

However, this past week, the influential ethicist Arthur L. Caplan, PhD wrote a commentary titled “Should It Be Harder to Get Abortions for Down Syndrome Babies?”
for Medscape, a password protected medical news website for health professionals.

In his commentary, ethicist Caplan recognizes the worries that “Down Syndrome is becoming increasingly rare in Europe and the United States” because of prenatal testing and abortion.

But he contends that because:

“In recent years, we have even seen kids with Down syndrome appearing on cheerleading squads, or being put into beauty pageants. It’s clear that there has been movement to not exile or isolate children in the United States with Down syndrome and to try and get them more mainstream.” (Emphasis added)

Nevertheless, ethicist Caplan accepts the ultimate “exile” of Down Syndrome by abortion because “After all, legally, you don’t have to have any reason to decide to end the pregnancy.” (Emphasis added) He additionally cites polls showing high public support for abortion for “genetic  or hereditary diseases”.

Therefore he also criticizes the few states that have passed laws to protect unborn babies testing positive for Down Syndrome from abortion. (Emphasis added)

Dr. Caplan says he is not against “offering information to parents” about Down Syndrome but he is against “mandating” that such information be given.

Perhaps Dr. Caplan has forgotten that in 2008, the Kennedy Brownback law “Prenatally and Postnatally Diagnosed Conditions Awareness Act” was overwhelmingly passed by both houses of Congress and signed into law “(t)o amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”

DOWN SYNDROME AND PREJUDICE

Unfortunately, prenatal discrimination naturally leads to postnatal discrimination as I personally discovered when my husband and I had our daughter Karen who had Down Syndrome and a heart defect. We were shocked when the cardiologist gave us the option of refusing cardiac surgery and letting her die despite the excellent chance for survival with surgery.

Although we chose life for our daughter, we later found that Karen was secretly made a “Do not Resuscitate” (DNR) during one hospitalization by our trusted pediatrician who said I was “too emotionally involved with that retarded baby”. Unfortunately, we eventually lost our Karen to complications from pneumonia before her planned surgery.

I’m sure Dr. Caplan would not be in favor of terminating anyone because of race, sex, etc. but he apparently has a “politically correct” blind spot when it comes to abortion.

Ironically, one of the state laws that ethicist Caplan objects to states:

“That Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex or diagnosis or potential diagnosis of the fetus having Downs syndrome or any other disability.”  (Emphasis added)

Sadly, that Indiana law was ruled unconstitutional in 2018 because of the legal “right to abortion” for any or no reason at all.

CONCLUSION

There is no test that will prove that an unborn baby is “perfect”, either before or after birth. For example, many of us have had our so-called “normal” children unexpectedly die or become addicted to illegal drugs years after birth. It is a sad conceit to assume that we can ensure the happiness of ourselves and our families by testing and then controlling which of our unborn babies are allowed to live.

In reality, a 2016 study “Positive attitudes prevail within families of people with Down syndrome” showed that almost 90% of families with members having Down Syndrome reported pride, love and even feelings of enrichment.

And a 2011 study in the American Journal of Medical Genetics titled “Self-perceptions from People with Down Syndrome “ found that “99% of people with Down syndrome indicated that they were happy with their lives”.

Nevertheless, as those of us who have had children with Down Syndrome know, the negative stereotypes of people with Down Syndrome persist despite these studies and often affect the medical professionals and ethicists charged with giving women and families information and options (including adoption) for conditions like Down Syndrome. Incomplete or biased information can be deadly and result in the now up to 90% of mothers who abort their unborn babies after a diagnosis of Down Syndrome.

The world is so much poorer without people like my late daughter Karen who was greatly loved. Prejudice against Down Syndrome justified as the legal “right to abortion” is lethal, not “acceptable”.

Women and their families surely deserve both comprehensive information and support when a prenatal diagnosis like Down Syndrome is made.

And every child, born or unborn, deserves a chance for life.

“Rational” Suicide and the “Elderly”

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

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

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

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

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

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

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

……

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

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

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

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

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

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

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

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

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

………

 

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

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

……

 

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

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

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

……..

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

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

 

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

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

…….

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

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

………

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

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

 

CONCLUSION

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

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

 

 

From “Choice” To “No Choice”-Lessons from the Baby Alfie Evans Case

Defending the UK High Court’s order allowing Alder Hay Children’s Hospital to withdraw life support from Baby Alfie Evans and refusing to even allow his parents to take him home, Dr. Ranj Singh of the UK National Health Service was quoted: “This is not the killing of a child – this is redirecting care to make them more comfortable.

Although this callous statement suggests an economic motive, I believe the real problem is a fundamental shift in legal and medical ethics that started in the US in 1976 with the Karen Quinlan case.

Karen was a 21 year old woman whose parents wanted to remove her ventilator after she did not wake up after losing consciousness after a party. The doctors disagreed but the California Supreme Court upheld parents’ decision by stating:

“No compelling interest of the state could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient state,” then-Chief Justice Richard Hughes wrote. (Emphasis added)

Ironically, Karen did not stop breathing and lived 9 more years with a feeding tube and basic care. But Karen’s case set the stage for the so-called “right to die” movement, “living wills” with removal of feedings and eventually the current assisted suicide/euthanasia movement.

Unfortunately, Baby Alfie and his parents are just the latest casualties of an emerging legal/medical/popular mindset that some people are better off dead. To make matters worse, Baby Alfie’s case-like the similar Baby Charlie Gard case  in the UK last year-are perhaps intended to become examples to discourage other parents (or families) from challenging doctors, hospitals and courts on mandatory withdrawal of treatment decisions.

WHAT HAPPENED TO BABY ALFIE AND COULD THIS HAPPEN HERE IN THE US?

Baby Alfie Evans was born in the UK on May 9, 2016 and apparently healthy. His parents became concerned when he missed the developmental milestones that most babies achieve in their first 7 months and started making “jerking, seizure-life movements”.

In December 2016, he caught a chest infection that caused seizures and was placed on a ventilator at Alder Hey Children’s Hospital. Despite the doctors’ dire predictions, Alfie started breathing on his own but caught another chest infection and seizures and went back on a ventilator.

Without having a definitive diagnosis after a year and Baby Alfie in what his doctors called a “semi-vegetative” state, the hospital and doctors wanted to remove his ventilator but Alfie’s parents fought back.

The hospital took the case to the British High Court, stating that “further treatment” for Alfie was “not in his best interests” as well as “unkind and inhumane”.

After many failed court appeals by the parents and even help from Pope Francis and an Italian hospital ready to take the baby, the hospital remained intractable and Alfie was not even allowed to go home with his parents. The ventilator was removed but, contrary to the doctors’ predictions, Alfie continued to breathe on his own for five more days before finally dying.

I watched the tragedy of Baby Alfie from afar with a lot of alarm as well as personal sadness.

I first became aware of medical discrimination against babies with mental disabilities in 1982 with the Baby Doe case. Baby Doe was born with Down Syndrome and a correctable congenital defect in his throat that makes eating food orally impossible but his parents refused surgery on the advice of the obstetrician but against the recommendations of two other doctors who advised immediate surgery. The case went to court but the judge ruled in favor of his parents. The parents also refused all offers of adoption. Baby Doe died from starvation and dehydration while lawyers were still appealing his case. Tragically, Baby Doe did not even receive simple intravenous fluids to keep him alive until his appeals were finished. Many of us who spoke out about Baby Doe’s right to treatment were accused of being “mean” to his parents.

When my daughter Karen was born just after Baby Doe died and also with Down Syndrome as well as a treatable heart defect, I was offered the “choice” of refusing heart surgery for her and “letting” her die. However, even after I insisted on the surgery, I found out that one doctor made her a Do Not Resuscitate behind my back and I was told by others-even other health care professionals like myself-things like “People like you shouldn’t be saddled with a child like that!”

I became so fearful that at one point I slept on the floor under my daughter’s crib during an overnight hospitalization for a test.

It was devastating when Karen died from sudden complications of pneumonia at 5 ½ months but I will never regret fighting for her right to be treated the same as other children with her heart defect.

With Baby Simon Crosier who was born with Trisomy 18 and a heart defect in 2010, his parents begged for help when Simon started deteriorating without knowing that the hospital had made their baby a Do Not Resuscitate and was being given only “comfort feeds” due to a secret futility policy. They had to helplessly watch as Simon died in their arms. The later Simon’s Law bill they helped write to prevent other outrageous secret futility guidelines in hospitals continues to sit in a Missouri legislative committee but hopefully it will get to the House floor this session. (Simon’s Law was passed in Kansas in 2017.)

PARENTAL DECISION-MAKING

The usual standard for parental decision-making in the US has been:

“Medical caretakers have an ethical and legal duty to advocate for the best interests of the child when parental decisions are potentially dangerous to the child’s health, imprudent, neglectful, or abusive. As a general rule, medical caretakers and others should challenge parental decisions when those decisions place the child at significant risk of serious harm. ” (Emphasis added)

But, after Baby Doe starved to death, medical groups fought the proposed Baby Doe Regulations intended to protect such children with disabilities as too restrictive. For example, the American Medical Association endorsed the quality of life standard prior to the Baby Doe case :

“In the making of decisions for the treatment of seriously deformed newborns or persons who are severely deteriorated victims of injury, illness, or advanced age, quality of life is a factor to be considered in determining what is best for the individual.

In caring for defective infants the advice and judgment of the physician should be readily available, but the decision as to whether to treat a severely defective infant and exert maximal efforts to sustain life should be the choice of the parents.” (Emphasis added)

But at a pediatric ethics conference in 1994, I was shocked by a workshop where the  focus was on how to convince parents to refuse or withdraw treatment from seriously disabled or dying children. One speaker/lawyer was even applauded when he suggested that parents who refused to withdraw treatment like feeding tubes from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. He also said that judges would be most likely to side with the doctors and/or ethics committee if such cases went to court.

Over the years and unknown to most of the public, many ethicists still refuse to concede this “choice” of a right to continue treatment and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care to patients of any age. This theory evolved into “futile care” policies at hospitals in Houston, Des Moines, California and other areas. Even Catholic hospitals have been involved.

And now, as Baby Simon’s parents and I have unfortunately found, such decisions are sometimes made without even notifying us. This must change with not only legislation like Simon’s Law but also a change of attitude towards these little ones.

CONCLUSION

While there are situations where a family or patient might unreasonably demand truly medically futile or unduly burdensome treatment, the decision to deliberately end the life of a person because he or she is deemed to have little or no “quality of life” should never be made.

The terrible ordeal that Baby Alfie and his parents went through sparked tremendous outrage around the world, especially the callous treatment of his obviously loving parents.

This was inhuman, not “humane” and we must continue the fight to demand truly ethical, caring and nondiscriminatory healthcare, especially for the youngest among us.