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Welcome to my blog!

I hope you will find it worthwhile and enlightening. These are my own personal observations and I encourage you to share yours.

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I also have an archive of older articles, etc. from Voices magazine at my other blog “Nancy Valko, RN ALNC”.

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Nancy Valko, RN ALNC

How the New “Palliative Care and Hospice Education and Training Act” Could Threaten Conscience Rights.

Two weeks ago, I wrote about the new Senate Bill 693 titled the “Palliative Care and Hospice Education and Training Act” (now referred to the Committee on Health, Education, Labor, and Pensions) and warned about the current and future involvement of Compassion and Choices (the former Hemlock Society now pushing for legalizing physician-assisted suicide throughout the US) in “end of life” education for healthcare professionals. But Compassion and Choices is not the only organization supporting practices that, until the last few decades, were universally condemned.  For example, last year the American Nurses Association took a position approving VSED (voluntary stopping of eating and drinking) to hasten death  and that those decisions “will be honored” by nurses.

In addition, this year the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

Unfortunately, Senate Bill 693 does not contain any requirement of conscience rights protection in allocating grants to groups proposing to expand hospice and palliative care education programs for healthcare professionals.

BIOETHICS AND CONSCIENCE RIGHTS

According to Dr. Edmund Pellegrino, writing on the origin and evolution of ethics in 1999 for the Kennedy Institute of Ethics :

“In the 1960s and 1970s, building upon liberal theory and procedural justice, much of the discourse of medical ethics went through a dramatic shift and largely reconfigured itself into bioethics.”

Instead of the old Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting a suicide, bioethics has evolved into essentially four principles: Respect for autonomy (the patient’s right to choose or refuse treatment), Beneficence (acting in the best interest of the patient), Non-maleficence (not causing harm) and Justice (fairness, equality and distributive justice “so that the needs of the entire population are taken into account.” ) which often compete in actual medical situations.

Unfortunately, the principles of the new bioethics do not address the issue of conscience, which has now become a contentious issue in bioethics.

For example at the 2018 AMA meeting where the House of Delegates voted not to accept the Committee on Ethical and Judicial Affairs report’s recommendation to continue the AMA’s opposition to physician-assisted suicide, one doctor responded:

“We feel the AMA abandoned all physicians who, through conscience beliefs, want to support patients with this in states where it’s legal,” said Lynn Parry, MD, a Colorado delegate, on behalf of the PacWest group, which includes AMA delegates from six Western states that have legalized physician aid-in-dying. “I personally think we need to protect physicians in those states and would ask for referral back.” (Emphasis added)

Dr. Ezekiel J Emanuel, MD, PhD, an influential physician who was one of the architects of Obama care and a formerly strong opponent of assisted suicide, wrote in a 2017 New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” that:

“ Conscientious  objection  still  requires  conveying  accurate  information  and  providing  timely  referrals to ensure patients receive care.

……

“Health care professionals who are unwilling to accept these limits (on conscience rights) have two choices: select an area of medicine, such as radiology, that will not put them in situations that conflict with their personal morality or, if there is no such area, leave the profession.

……

“Laws may allow physicians, nurses, pharmacists, and other health care workers to deny patients treatment or to refuse to care for particular populations, but professional medical associations should insist that doing so is unethical.” (All emphasis added)

CONCLUSION

When it comes to issues like withdrawing feeding tubes from so-called “vegetative”  patients, terminal sedation to hasten death and physician-assisted suicide, this last point from Dr. Emanuel leaves those of us physicians and nurses who refuse to kill our patients or help them kill themselves with few options to continue in our professions.

Years ago when I was threatened with firing for refusing to increase a morphine drip on a comatose man who was removed from a ventilator but still continued breathing, I was told that this was acceptable “end of life” care to “prevent pain”.  I know one nurse who was fired for refusing to give morphine every hour to a dying patient in no distress and barely breathing because the family demanded it. I’ve heard from families who were automatically offered hospice instead of rehab when their loved one was elderly and injured.

When such outrages occur even outside of formal hospice or palliative care programs and considered “normal” end of life care, ethical healthcare professionals find no recourse through their professional organizations or the law to protect their patients from premature death.

Thus when healthcare legislation like SB 693 promotes giving grants to organizations who support or might support VSED, assisted suicide, etc. to train healthcare professionals in hospice and palliative care without clear conscience rights protection, both healthcare professionals and the public are at risk of a normalized culture of premature death.

 

Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion

A PRENATAL MISDIAGNOSIS

 Drew and Adriann Corpstein were devastated when they were told at 20 weeks that their unborn baby had a lethal brain abnormality called semilobar holoprosencephaly, an abnormality of brain development in which the brain doesn’t properly divide into right and left hemispheres. They were told that the baby might only live a few days as a “vegetable” and encouraged the couple to consider a late-term abortion.

Instead they decided to trust God, deliver their baby and love him for whatever time they had with him.

Baby Matthew was born on July 29 but just the next day, the doctor gave them the stunning news that Baby Matthew did NOT have the lethal brain condition but rather hydrocephalus-an excess of fluid around the brain that can be treated with a shunt. Baby Matthew could then survive and even have the chance of a fully functioning life! (Click here to see a beautiful video of Baby Matthew and his parents.)

Personally, I have seen more than one prenatal diagnosis turn out to be wrong.

Of course, prenatal testing is not always wrong but there is cause for concern about the number of unborn babies misdiagnosed, especially with some newer screening blood tests. (Please see my February blog A Dark Side of Prenatal Testing” )

But there are alternatives to abortion when the prenatal diagnosis turns out to be accurate.

As Baby Matthew’s parents mentioned in the article, they prepared for end of life care for him when he was expected to die shortly after birth and there are often such hospices available in many areas.

There are also organizations like Prenatal Partners for Life  and Be Not Afraid that provide support, information, resources and encouragement for carrying to term with an adverse prenatal diagnosis.

These organizations’ websites also have parents’ stories of their children with a range of prenatal diagnoses ranging from lethal ones like anencephaly to disabilities like Down Syndrome or Spina Bifida.

MAN SAVES GRANDCHILD FROM ABORTION

This month, I read an uplifting story that personally resonated with me.

With a heavy heart because his wife was “dead-set” on abortion for their 16 year old daughter, “Brian” took his daughter to A Woman’s Pregnancy Center  in Tallahassee, Florida. But when his daughter went in to speak to a counselor, “Brian” was surprised when a male counselor wanted to speak with him.

“Brian” didn’t know that when a client comes into A Women’s Pregnancy Center (a crisis pregnancy center) with another person, the staff determines the other person’s relationship to the client and invites the support person to speak with a different counselor about their thoughts and feelings on the client’s situation.

“Brian” told the counselor that his wife wanted their daughter to have an abortion and he wanted their daughter to be safe. But when the counselor told him, in effect, that ‘You are made in the image of God for a reason and a purpose. You are Eliza’s father AND the grandfather of her child. He is the Creator of the Universe and has given you this role. Trust Him, and He will equip you to take care of your family’, “Brian” changed.

He went to his daughter and said “Baby girl, we’ve got this.” He told his daughter to look at him and said “I’m going to take care of you.” His daughter burst into tears of relief.

Sherri Daume, director of client services at the clinic, explained about ministering to a support person when a woman is considering abortion:

“The support person is often as confused and scared for their loved one as the client herself. They might have a grandchild or niece or nephew in the picture. They usually want to help the client but don’t know how. We equip the support person with information and resources that help them support their loved one in a relevant way.”

I totally agree with this and I have personally seen the effects of such support.

When my oldest daughter Marie became pregnant at 18, her friends were “pro-choice” on abortion. But, as she told me, she knew too much about unborn babies and abortion from growing up in a pro-life family. For Marie, abortion was out of the question.

Marie was surprised but pleased when she told her “pro-choice” friends that she would not have an abortion and they enthusiastically supported her decision. Many even offered to help. However, they did not support her anguished but brave decision to release her baby for adoption.

I told her that I would support her if she decided to raise her baby herself but she decided that her and the father’s problems would keep her baby from having the best life possible.

That decision was hard for our family to accept but our beautiful oldest granddaughter turned 20 this week with the loving and proud parents who adopted her after birth. And despite my daughter’s untimely death almost 9 years ago, we are so grateful that our family will also be able to celebrate this milestone with her and the family who adopted her.

 

 

Beware the New “Palliative Care and Hospice Education and Training Act”

Right now, there is a Senate Bill 693 titled “The Palliative Care and Hospice Education and Training Act” to authorize more and better training in palliative and hospice care. Although a provision (SEC. 6. Clarification) was recently added to explicitly forbid federal funding for any health care furnished for the purpose of causing or assisting the death of any individual by assisted suicide, euthanasia or mercy killing, many of us have serious concerns. (The similar House Bill 1676 has already passed and sent to the Senate.)

As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.

Unfortunately, there is a growing trend towards calling unethical practices “palliative” or “hospice” care.

For example and just a few years ago in a Catholic hospital, I saw a nurse/friend’s life deliberately ended due to so-called palliative and hospice care labeled “comfort care.” She had recently suffered a serious brain injury and was declared hopeless after a couple of weeks. The family was strongly pushed to switch to “comfort care”.  She was taken off a ventilator, had her feeding tube removed (against her adult son’s wishes), and continued to receive the sedation medications used when she was on the ventilator, even receiving an increase in those medications when she continued to breathe on her own. Despite my friend’s son insisting that he wanted the feeding tube replaced and that he wanted to eventually care for his mother at home whatever her level of functioning was, he was told to wait until a doctor could order the feeding tube replaced. The hospital waited until he went home to sleep, transferred her to the hospice unit without his permission and she was dead by morning.

Unfortunately, similar stories have become increasingly more common since the 1970s when the Euthanasia Society of America changed its name to the Society for the Right to Die and promoted the new “living wills”. Now we have well-funded groups like Compassion and Choices (the former Hemlock Society) not only promoting physician-assisted suicide but also trying to change medical ethics from never deliberately causing or hastening death to merely a “choice” about when and how to die.

Two years ago in my blog “Is Compassion and Choices aiming to become the “Planned Parenthood” of Euthanasia?, I warned about the current and future involvement of Compassion and Choices in “end of life” education.

Here are some excerpts:

With over $22 million in 2015 net assets,  a 4 star rating from Charity Navigator, enthusiastic media coverage and a new  Federal Policy Agenda for 2016 and Beyond” , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.

While Compassion and Choices claims that it just “works to improve care and expand choice at the end of life”, it also admits that “We employ  educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.” (Emphasis added)

……….

THE PALLIATIVE AND HOSPICE CONNECTION

Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM.

………..

Now, Compassion & Choices’ website has a video presentation based on this article  titled  “Understand the Clinical Practice of Aid in Dying” for doctors and other clinicians. The presentation even offers continuing medical education credits.

This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to “studied neutrality”, a position that the American Medical Association itself is now considering.

………….

Compassion and Choices also supports two other “legal” options for assisted suicide in states that haven’t passed physician-assisted suicide laws. One is “voluntary stopping of eating and drinking (VSED)” and the other is “palliative sedation-Sometimes called terminal sedation”. Significantly, the recommendations include the admission that “VSED includes pain and symptom management” and “Palliative sedation must be medically managed by a healthcare provider”. Thus the need to influence and train hospice and palliative care providers.

………..

WHERE THE MONEY AND POWER IS

Compassion and Choices now has its “Federal Policy Agenda / 2016 & Beyond”.

The priorities on its agenda include:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….”  (Emphasis added)

Also included are

Professional Education and Development” training programs for doctors and other providers “in discussing terminal prognoses and death” and  “Policies and Payment Systems” to change medical policies and payments to a “a value-based healthcare payment system” that will “(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies” to withhold   “appropriations or other funds”  for treatment that was “provided but (deemed) unwanted”.

This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat him or her in hope of a good result because of potential lawsuits or reimbursement problems.

………

In the meantime, if the Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently  “free consultation, planning resources, referrals and guidance”.

CONCLUSION

I have already contacted my state senator to express my concerns and urged him to vote “no” on SB 693.

As Nancy Elliot, chair of the Euthanasia Prevention Council USA, ended in a great letter to Senators opposing the Palliative Care and Hospice Education and Training  Act :

“instead of creating a rival form of palliative care…Wouldn’t it be better to educate/update all physicians and nurses about pain and symptom management?”

Journal of the American Medical Association Article Calls Crisis Pregnancy Centers “Legal but Unethical”

When I first started nursing school, abortion was illegal in all 50 states and the American Medical Association (AMA) was influential and widely admired.

But, as cited and influential in the Roe v Wade decision in 1973, the AMA dropped its’ opposition to abortion in 1970  after a few states legalized abortion with resolutions  that stated:

“abortion is a medical procedure that should be performed by a licensed physician in an accredited hospital only after consultation with two other physicians and in conformity with state law, and that no party to the procedure should be required to violate personally held moral principles”.

I remember how upset many doctors were with the AMA after Roe v Wade and many dropped out of the AMA.

Now, there are over one million MDs in the US  but less than 25% of practicing doctors are members of the AMA, down from 75% in the 1950s. (This is not just because of abortion but also the politics of the AMA.)

The AMA today now stands firmly for abortion rights and even against common sense conscience rights protection.

“AT ‘CRISIS PREGNANCY CENTERS’, CRITICS SAY, IDEOLOGY TRUMPS EVIDENCE”

This is the title of a July 18, 2018 article in the Journal of the American Medical Association by Rita Rubin, MA excoriating crisis pregnancy centers (CPCs) as “legal but unethical”.

Among the allegedly “unethical” practices the article cites are that CPCs “don’t prescribe or provide birth control” and “dispense misleading information-sometimes mandated by the state-about disproved or exaggerated harms associated with abortion, including increased risk of breast cancer, depression and infertility”. The article also criticizes the free ultrasounds as “medically unnecessary” and “emotional manipulation”.

But, according to the article, the biggest ethical problem seems to be “withholding information” about obtaining abortions.

The article cites California as the first state to pass a crisis pregnancy mandatory disclosure law that mandates CPCs to “post or distribute a notice about California’s public programs that provide free or low-cost contraception, prenatal care, and abortion“.(Emphasis added)

The article criticizes the June 26, 2018, the US Supreme Court’s National Institute of Family and Life Advocates v. Becerra decision that struck down the California law as likely unconstitutional.

The JAMA article also decries a recent Health and Human Services’ announcement that Title X family planning services grants includes “natural family planning methods” and that faith-based organizations are eligible to apply for such grants.

THE REAL FACTS ABOUT CRISIS PREGNANCY CENTERS

As even the JAMA article admits, there are more than 3500 CPCs in the US, more than twice the number of US institutions that performed at least 1 abortion in 2014 according to the pro-abortion Guttmacher Institute. That is a decline of 3% between 2011 and 2014.

Obviously, crisis pregnancy centers are seen as threatening to the pro-abortion movement.

As CPC volunteer Patty Knap observed in her blog The Real Reason Crisis Pregnancy Centers Must Always be Free”,  “The difference between an abortion center and a pro-life pregnancy center is like day and night. Or life and death.”

Ms. Knap observes that, unlike an abortion clinic that charges for everything, CPCs don’t charge for anything-including pregnancy tests. Instead, Ms. Knap says, “Every pregnancy center in the country is constantly fundraising”.

Ms. Knap says offering their services without charge is necessary because the trust factor is so important. When their clients understand the motivation of someone who isn’t profiting from the decision they are making, they are more likely to accept the truth and real help.

CONCLUSION

Just as outrageous as California’s attempt to compel crisis pregnancy centers to advertise abortion is that so many mainstream media outlets continue to ignore or disparage the ongoing efforts of the pro-life movement to offer desperate women a loving opportunity for them and their unborn babies.

We may sometimes wonder if attending fundraising baby showers in our churches, picketing abortion clinics with telephone numbers for help, donating to Birthright, etc.  is really accomplishing much. But, as the successes of CPCs show, even the smallest effort by a great number of people can produce the awesome result of helping distressed mothers and saving their babies’ lives.

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.

3 Tips for Safeguarding Your Loved One in a Nursing Home

I have had many relatives and friends who lived in nursing homes and, especially as a nurse, I am always saddened by how few of the other residents had any visitors, even family members. I have even heard relatives say they would just prefer to remember their relative “the way they were”.

This is not only tragic for the family member’s or friend’s psychological well-being but also potentially for their safety. Nursing home residents without visitors are at greater risk of neglect or even abuse. With sometimes inadequate staffing and/or high nurse and aide turnover, it is important that people in a nursing home have someone who knows them to look out for them.

Here are 3 tips that can help safeguard a friend or relative:

  1.  Get to know the staff and tell them about your friend or relative, especially likes or dislikes. Visit at different times or days in order to know the staff and when it is most convenient to talk with them.
  1. Notice “red flags” like poor personal hygiene, unexplained injuries, weight loss, emotional changes, environmental hazards etc. and know who to contact if you see a problem.
  1. Especially if you are have health care power of attorney for your relative or friend, ask about care conferences so that you can attend them. Such conferences usually cover how the resident is doing in terms of activity, possible pain, eating, mobility, etc. It is also crucial to know what medications have been ordered and given, especially the PRN (as needed) ones. For example, you may notice a change such as sleepiness or fatigue that can be helped with a medication change.

CONCLUSION

By 2020, it is projected that the global population of human beings who are 65 and older will surpass those under 5 for the first time in human history. At the same time, families have fewer children, older adults are more likely to have never married or to be divorced and adult children often live far from their parents. This makes it harder for many older people who prefer to live independently in their own homes indefinitely without help.

According to the CDC, 1.4 million people are nursing home residents in the US and, as I wrote in last week’s blog “‘Rational’ Suicide and the ‘Elderly'”, those residents really benefit from visitors as do all of us who volunteer to help the elderly!

 

 

“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!

 

 

 

 

A Legacy for Jahi McMath

As a mother who has lost two beloved daughters, my heart goes out to Jahi McMath’s  mother Nailah Winkfield after the recent loss of her daughter after an almost 5 year battle to save her and have California rescind her death certificate after doctors concluded that Jahi was “brain dead”.

Jahi McMath was only 13 years old when she suffered complications after what was supposed to be a routine tonsillectomy and was declared “brain dead”. But instead of just accepting the diagnosis, her mother insisted that Jahi continue to be treated with a ventilator and have a feeding tube in the hope that she could improve.

The California hospital refused and a death certificate was issued for Jahi. The case made national news with influential ethicists like Arthur Caplan, PhD stating about Jahi that “You can’t really feed a corpse” and “She is going to start to decompose.” Other experts like Dr. Alan Shewmon disagreed.

Jahi’s mother went to court but a judge declared that Jahi met California’s criteria for brain death and that the hospital could remove Jahi’s  ventilator. However, the judge stayed the order for awhile so Jahi’s mother could appeal.

Instead and with the help of lawyers and The Terri Schiavo Life & Hope Network ,  Jahi’s mother was able to get her daughter transferred to New Jersey, a state that allows a religious exemption for determining death solely on the basis of the stopping of breathing and heartbeat instead of “brain death”.

After the transfer, Jahi’s  family released videos showing that not only did Jahi’s  body not deteriorate but also that Jahi seemed to be improving and moving her toes.

Sadly, Jahi unexpectedly died June 22, 2018 from excessive bleeding and liver failure after an operation for an intestinal problem. Jahi’s mother says she does not regret the years-long efforts to save her daughter and maintains that Jahi was able to communicate with me with her hands,” “Sometimes her feet, sometimes her head, but we spoke with her hands.”

A SURPRISING DEVELOPMENT

On April 11, 2018 and before Jahi died, the Harvard Medical School held a conference on “Brain Death and the Controversial Case of Jahi McMath”.

The results of this conference were released just days after Jahi’s  death and, according to The Mercury News, said that:

” Jahi McMath’s  brain showed subtle signs of improvement over the five-year span following the original declaration that she was brain-dead — suggesting a legal ‘resurrection’ from death to life and challenging our widely held understanding of what it means to be officially dead.” (Emphasis added)

And also that Jahi:

continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.” (Emphasis added)

Dr. Robert Truog, the director of the Harvard Center for Bioethics who organized the conference, has long maintained that the legal definition of brain death as the “irreversible cessation of all functions of the entire brain, including the brain stem” was a  “legal fiction”.

But in a July 2, 2018 Mercury News article “Jahi McMath improved after she was declared brain-dead, doctors say”, Dr. Truog also said that “brain death” does not necessarily signify biological death but merely the extreme end of the spectrum of brain injury and that:

Even if (“brain dead”) patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead.” (Emphasis added)

In the meantime, Jahi McMath now has two death certificates- one in California and one in New Jersey-and her family has a malpractice lawsuit against the original hospital.

CONCLUSION

Jahi McMath leaves behind many who mourn her but also the achievement of bringing public attention to the problems with the “brain death” diagnosis.

Unfortunately, as one new bioethicist wrote in a blog “Redefining Death in the Law” after attending the Harvard conference, with the legal concept of “brain death” undermined, death itself may be reduced to merely a personal choice:

“In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.” (Emphasis added)

Instead, I would submit that what we really should be doing is giving every brain-injured patient time, treatment and a chance to recover as fully as possible.

Now that would be a great legacy for Jahi McMath!