Year: 2018

The New Federal Conscience and Religious Freedom Division

nancyvalko abortion, assisted suicide, Compassion & Choices, conscience rights, medical ethics, Planned Parenthood

As a nurse threatened with termination for refusing to participate in an unethical health care decision years ago, I have a special interest in conscience rights for health care professionals.

Over the past several decades, new threats to conscience rights have widened from refusing to participate in abortions to other deliberate death decisions like withdrawal of feedings from people with serious brain injuries, VSED (voluntary stopping of eating and drinking), terminal sedation and physician-assisted suicide.

Thus, I am pleased that the Trump administration just announced the new Conscience and Religious Freedom Division  in the department of Health and Human Services’ Office for Civil Rights (OCR) to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”. The division specifically mentions “issues such as abortion and assisted suicide (among others) in HHS-funded or conducted programs and activities” and includes a link to file a conscience or religious freedom complaint “if you feel a health care provider or government agency coerced or discriminated against you (or someone else) unlawfully”.

Predictably, both Compassion and Choices and Planned Parenthood immediately condemned the new department.

In a recent fundraising email, Compassion and Choices states that:

 “This office (OCR) is not about freedom; it’s about denying patient autonomy. Under their proposed rules, providers are encouraged to impose their own religious beliefs on their patients and withhold vital information about treatment options from their patients — up to, and including, the option of medical aid in dying. And your federal tax dollars will be used to protect physicians who make the unconscionable decision to willfully withhold crucial information regarding their care from a patient and abandon them when they are most vulnerable.” (Emphasis added)

Planned Parenthood is just as adamant and includes other issues in their reaction:

“OCR is an important office within the HHS that’s meant to protect health care for marginalized communities, including LGBTQ people and underserved women. But the creation of the new “Conscience and Religious Freedom Division” paves the way for discrimination against people for a variety of reasons — be it their gender identity, sexual orientation, or decision to access a safe, legal abortion.” (Emphasis in original)

A SHORT RECENT HISTORY OF FEDERAL CONSCIENCE RIGHTS PROTECTIONS

In response to declining numbers of doctors willing to do abortions in the 1990s, efforts began to mainstream abortion into the health professions such as requiring abortion training for OB/GYNs, shifting training and practice into teaching hospitals and  integrating abortion into regular health care.

The National Abortion Federation along with Medical Students for Choice, pushed for change and in 1995, the Accreditation Council for Graduate Medical Education ruled that OB/GYN residency programs must include abortion training or lose accreditation.

That was overturned the next year with the Coats Amendment passed by Congress but  efforts to marginalize pro-life medical professionals continued, especially with newly passed physician-assisted suicide laws and well-publicized withdrawal of feeding tube cases like Terri Schiavo’s.

In 2008, the Christian Medical Association compiled a list of dozens of real-life cases of discrimination in health care, including doctors, medical students, nurses and pharmacists.

That same year, President Bush strengthened the HHS rules protecting the conscience rights of doctors and nurses to refuse to perform abortions.

In 2011, the Obama administration dismantled key provisions of the Bush administration conscience rights rules.

That same year, 12 New Jersey nurses faced firing for refusal to participate in abortion and had to rely on groups like Alliance Defending Freedom to bring a  lawsuit defending their rights. They were finally vindicated in 2013.

Right now, Wisconsin is considering a physician-assisted suicide bill that states a doctor’s refusal to prescribe the lethal drugs or refer the patient to a willing doctor “constitutes unprofessional conduct”.

Obviously, conscience rights cannot depend just on litigation, conflicting state laws or professional organization positions like the American Medical Association’s  or American Nurses Association’s that don’t vigorously defend conscience rights.

As explained on the Dorsey Health Care group website ,

“In January 2018, OCR announced a proposed rule to strengthen conscience-based protections for individuals and entities with objections to certain activities based on religious belief and moral convictions.”

“OCR now proposes to return much of 45 CFR part 88 to its 2008 Bush-era form, adding a requirement that certain recipients of HHS funds certify they comply with conscience protection laws and notify individuals of their rights thereunder”, enhance investigative and enforcement abilities and expands its enforcement authority to more conscience-protection laws than the 2008 or 2011 iterations. It will also “handle complaints [both formal and not], perform compliance reviews, investigate, and seek appropriate action,” including terminating funding and requiring repayment. OCR states “that a more centralized approach to enforcement of conscience protections is necessary in part due to rapidly rising complaints.” (Emphasis added) Comments on this proposed rule can be submitted by March 27, 2018.

CONCLUSION

Health care professionals with pro-life views have been under attack for decades. It’s more than just not being “politically correct”; the very existence of such health care professionals threatens the appropriation of health care by groups dedicated to promoting abortion, assisted suicide and euthanasia as civil rights.

Without strong conscience rights protections like a successful Conscience and Religious Freedom Division, they will succeed in making health care termination-friendly.

But in the end, enforcement of the most basic civil right of health care professionals to provide care for patients without being required to participate in life-destroying  activities should not be determined by politics or popularity polls but by the acceptance of the universal principle of respect and protection for human life.

 

A Dark Side of Prenatal Testing

nancyvalko abortion, disability, prenatal testing, Simon's Law

In her February 2018 article “Prenatal Testing and Denial of Care”, Bridget Mora exposes another dark side of prenatal testing: refusal to treat. Ms. Mora is the community education and communications coordinator for Be Not Afraid, a nonprofit that supports parents experiencing a prenatal diagnosis and carrying to term.

While most people have heard of amniocentesis (using a needle to extract and analyze the fluid surrounding an unborn baby in the second trimester), many people are unaware of the screening blood tests that have now become virtually routine for all pregnant women.

The difference is that blood screening tests may indicate a probability or risk score that a baby has a chromosomal anomaly, but a definitive diagnosis can only be made through amniocentesis or CVS (Chorionic villus sampling) using a needle to take a sample of tissue from an unborn baby’s placenta for analysis in the first trimester. Tragically, some parents make a decision to abort based on just a blood screening test.

Ms. Mora tells the story of Oliver Keith whose parents refused amniocentesis because of the risk of miscarriage. When an ultrasound showed abnormalities that suggested a genetic condition like Trisomy 13 or 18, the parents agreed to a blood test when the doctor told them that a diagnosis would ensure the proper treatment when Oliver was born.

However, when the results of the tests showed that Oliver had Trisomy 18, their son was “denied routine care during labor as well as the heart surgery that the same doctors had said would be necessary before the trisomy 18 diagnosis”.

The parents felt that Oliver was being discriminated against because of his trisomy 18 diagnosis and tried to give Oliver every chance at life but, in the end, Oliver died.

WHAT YOU NEED TO KNOW ABOUT PRENATAL TESTING

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

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

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

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

But maternity care has changed a lot since 1985.

Ms. Mora has done a great service in researching newer developments in prenatal testing that now include routine blood tests for all expectant mothers regardless of age or risk factors.

She notes that most parents are simply looking for reassurance that their baby is healthy.

But she also notes:

“Parents may not understand the difference between screening and diagnostic tests or be prepared for the consequences of a poor diagnosis or prognosis.

Very few genetic conditions can be treated prenatally, so if a disability is found, the “cure” proposed by the medical team is frequently abortion. In our utilitarian culture, prenatal screening has increasingly become a search-and-destroy mission to detect and eliminate babies with disabilities as early in pregnancy as possible.

Pressure to abort quickly, before they have had time to process a poor diagnosis and grieve the loss of the healthy child they expected, can throw parents off their usual moral compass.”

PHYSICIAN ATTITUDES MATTER

Ms. Mora is especially concerned about a newer and expensive cell-free fetal DNA test (also called NIPT) done in the first trimester using the mother’s blood. She says that although promoted as up to 99% accurate, independent laboratory studies have found that a positive result for a genetic condition can be incorrect 50% of the time or more.

Ms. Mora writes:

“Despite these serious limitations, adverse NIPT results all too frequently lead parents to have an abortion or doctors to alter treatment.

If a disability or potential disability is detected, the pressure to abort quickly may become intense. Although most parents undergo prenatal screening or testing with no plan to abort on the basis of the results, 80 percent decide to abort after being told their unborn baby has a severe congenital anomaly.

Counseling from physicians is often directive and parents may be encouraged to terminate on the basis of the doctor’s personal biases. A survey conducted by the American College of Obstetricians and Gynecologists found that 90 percent of the doctors who responded considered abortion to be a justifiable response to uniformly fatal fetal anomalies. Sixty-three percent considered abortion to be a justifiable response to nonfatal anomalies.” (Emphasis added)

HOPE

Bur even when the prognosis for an unborn baby is terminal, Ms. Mora maintains that parents usually want a better option than abortion and states that when offered perinatal hospice support, about 80% of US parents choose to carry their child to term and studies have found that “there appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis.”

And as I wrote in “Parent Power”, parents themselves are changing physician attitudes towards children with genetic conditions and even producing laws like “Simon’s Law” which passed in Kansas in 2017.

In the end, knowledge is power and discrimination against people with disabilities is wrong no matter how small the person.

Nurses, “Living Wills” and Healthcare Economic$

nancyvalko economics, end-of-life, medical ethics

A few weeks ago, a 95 year old friend with chronic congestive heart failure was recovering from a hip fracture and blood clot when she developed a very serious pneumonia. I was with her in the ER when the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doc was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was unconscious and that we were her decision makers.

My friend astonished the doctors by recovering with antibiotics and temporary BiPap (a face mask machine to support her breathing). After a stint in rehab, my friend was able to go home last week.

It was because of mistaken but potentially fatal situations like this that I wrote my 2015 blog “Living with ‘Living Wills” about the history, uses, problems and pitfalls with living wills and other end-of-life documents known as advance directives.

NURSES PUSHING “LIVING WILLS”

Just last week, however,  I read two articles by nurses uncritically promoting “living wills”, one in a major nursing journal and one in the LA Times.

The nursing journal article titled “Nurses in the Know: The History and Future of Advance Directives” by Blanca Miller, PhD, RN extolls the benefits of signing an advance directive like a “living will”, durable power of attorney, etc. Ms. Miller insists that nurses have an important role to play in promoting and implementing these documents.

She starts with a history of “living wills” beginning with Louis Kutner’s 1969 law journal article but ignores its’ title “Due Process of Euthanasia: The Living Will, A Proposal” (emphasis added) and the decades long fight to legalize euthanasia in the US by the Euthanasia Society of America  (later renamed the Society for the Right to Die and now known as Compassion and Choices)

When lawyer Kutner proposed his novel document for a person to sign that “if the individual’s bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease,” it was a breakthrough moment, according to Nurse Miller.

The next year, The Euthanasia Society of America distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law called the “Natural Death Act” and other states quickly followed.

Nurse Miller then writes approvingly of controversial withdrawal of feeding cases such as Nancy Cruzan’s  and Terri Schiavo’s as progress, along with the 1990  Patient Self-Determination Act .

Nurse Miller apparently sees no downside to such documents despite medical articles like “When Advance Directives Can be Dangerous” and cases like Helga Wanglie’s where doctors went to court to force her family to withdraw life support but a judge upheld Ms. Wanglie’s husband’s right to make medical decisions for her.

Instead Nurse Miller warns that:

“Projections indicate that by 2030, over half of the 8.5 million Americans over 85 years of age will suffer from dementia and have no spouse or children to care for them. Healthcare professionals will be increasingly confronted with concerns regarding individual autonomy and end of life decisions.”

And bemoans that:

“Although federal law requires healthcare providers and institutions to give patients advance directive forms, most patients do not complete them. Completion rates currently range from 18% to 31%.”

Most disturbingly, Nurse Miller approvingly writes that:

“Advance directive laws are still evolving. As seen in (Brittany) Maynard’s case,  Oregon’s Death with Dignity Act (1997) allows patients not only to reject possible life-saving treatments but also to actively accelerate death.”(Emphasis added)

Also pushing “living wills” in a LA Times article “You Should Make Decisions about End-of-life Care Now”, ICU nurse Kristen McConnell states that “the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life” and describes “an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke.” She describes caring for him:

“When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.”

When I worked as an ICU nurse, I saw similar attitudes among some of my colleagues who said such patients “need to die” even when these patients wanted medical treatment. These nurses criticized these patients’ care as a waste of time and money. Personally, I found it difficult to work with these nurses and, as a potential future patient, I would not want them caring for me.

Unfortunately, such attitudes can become infectious.

HEALTHCARE ECONOMIC$

In 2012, I wrote an article “Right to Health Care, Duty to Die?” about the disturbing changes I was seeing in healthcare.

Here is an excerpt:

Recently, I had a startling glimpse into the possible future nightmare facing both healthcare and nursing when I read “How Can We Afford to Die?” in the May-June 2012 issue of Nursing Economic$. (No, the “$” is not a typo but evidently a mindset.)

This influential nursing journal, written by nurse educators and others in health care policy positions, devoted the whole issue to death, dying, and cost containment. The agenda quickly became clear as the costs at the end of life were endlessly cited, but concerns about potential abuses were dismissed and conscience rights were not even mentioned in the six articles I read…

In the editorial for this issue of Nursing Economic$ ,  Donna M. Nickitas, PhD, RN   unapologetically even advocates for “punitive reimbursement policies for excessive end-of-life treatments that only prolong life.”

If enacted, such penalties will certainly intimidate many doctors regarding how aggressively to treat you if you are terminally ill, elderly, critically or chronically ill, or even potentially disabled.

This issue of Nursing Economic$ was given in conjunction with the Hospice-Palliative Care Action Plan presented at the Fifth Nursing Economic$ Summit “How Can We Afford to Die?” on June 6, 2012 in Washington, DC, in which an 8-point action plan was also presented. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directives. But this point had one interesting caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our  action plan will go for naught”. (emphasis added).

In other words, not choosing a potentially premature death can upset the economic imperative to reduce health care costs.

In the years since “How Can We Afford to Die?”, I constantly saw new cost-containment measures and government mandates introduced at my institution . I am not surprised that there are now high levels of burnout and depression reported among doctors and nurses, including “moral distress”.

CONCLUSION

Before my mother developed Alzheimer’s and cancer, she would tell me that she never wanted to be a “burden” on her children. She never was and I would never tell my children the same thing.

We need to expunge the idea of people as “burdens” and embrace the words of the late  Dame Cicely Saunders, nurse, physician and writer, and founder of the true hospice movement:

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

 

 

 

 

Swedish Citizen Unmasks a Main Physician-assisted Suicide Propaganda Point

nancyvalko assisted suicide, Compassion & Choices, euthanasia, law, media

Oregon, the first US state to legalize physician-assisted suicide, is routinely promoted by advocates as having the model law for assisted suicide. Now the debate has come to Sweden.

The Swedish National Council of Medical Ethics, an advisory board to the Swedish government and parliament, published a November 20, 2017 report, “Assisted Death: A Knowledge Compilation” (an English translation is coming) “to promote a more fact-based debate on assisted dying” and states that the Council “does not take a stand on assisted dying in the report”.

However, Fabian Stahle, a Swedish private citizen who read the report, found a problem.

In his article “Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model” , he notes that:

“As a basis for their reassurance of no slippery slope in the Oregon model, the authors of the Swedish report note that there is one question that is ‘the crucial issue’: is anyone with a non-terminal, chronic disease granted medical assisted death?” (Emphasis in original)

But Mr. Stahle notes that the report says elsewhere that the six-month limit on expected survival time applies, “if no treatment is given to slow down the course of the disease” (Emphasis in original)  and thus “might complicate the the whole idea that the law only applied to the ‘untreatable’ sick where nothing could be expected to extend life beyond six months”.

So Mr. Stahle says he did his own investigation by contacting the Oregon Health Authority himself.  Craig New, Research Analyst with the Oregon Health Authority  replied and told him that:

“…your interpretation is correct: The question is: should the disease be allowed to take its course, absent further treatment, is the patient likely to die within six months” (Emphasis added)

Fabian Stahle went further by asking if the doctor suggests to a eligible patient a treatment that possibly could prolong life or transform a terminal illness to a chronic illness or even cure the disease but the patient refuses, would that patient still be eligible for physician-assisted suicide.

He gave the example of a patient with a chronic disease like diabetes who refuses life-sustaining medication/treatment and becomes likely to die within 6 months and asked if that person would be eligible for assisted suicide.

Oregon’s Mr. New answered yes and that if the patient does not want treatment, that would also be their choice-along with the choice for assisted suicide.

As Fabian Stahle observes, this “allows a sanctioned path to suicide, aided by a physician, for anyone with a chronic illness who is likely to die within six months if they chose to stop treatment.” (Emphasis in original)

Fabian Stahle then asked about patients with a chronic disease whose health insurance company is not willing to pay for the treatment/medication.

Oregon’s Mr. New responded that:

“I think you could also argue that even if the treatment/medication could actually cure the disease, and the patient cannot pay for the treatment, then the disease remains incurable.” (Emphasis added)

And thus the patient is considered eligible for assisted suicide under Oregon’s law. This is especially outrageous.

THE BOTTOM LINE

Unfortunately, much of the public just accepts the Compassion and Choices propaganda that physician-assisted suicide is a safe “choice” with strict regulations for terminally and incurably ill people who are going to die soon anyway. Unfortunately, a mostly sympathetic mainstream media concurs and portrays assisted suicide as a “humane” last resort for extreme cases.

But now, Fabian Stahle, a Swedish private citizen, has done what few people do today even with such a life and death issue: He actually investigated the topic and contacted the Oregon Health Authority to clarify what “terminal” and “incurable” really legally means in Oregon’s “model” law.

Of course, there are many other problems with physician-assisted laws but Mr. Stahle focused on the one cited by the Swedish National Council of Medical Ethics as ‘the crucial issue’: is anyone with a non-terminal, chronic disease granted medical assisted death?”

Mr. Stahle is right to question this. The latest Oregon report on their assisted suicide law shows a range of diseases from cancer to undefined “other illnesses” as well as 43 people whose “ingestion status” of the prescribed overdose is unknown and obviously not followed up to see if or when they died.

Having written medical news analysis articles in the past for a national newspaper, I am appalled by the routine lack of investigative interest in life or death issues like assisted suicide from today’s mainstream media. The public needs and deserves better.

I wish Fabian Stahle was eligible for a Pulitzer Prize.

“MAID” in Laval, Canada

nancyvalko assisted suicide, conscience rights, medical ethics

The December 2017 issue of the Canadian medical journal Le Specialiste contains a fascinating but disturbing English language article “First Results from a Unique Study” on pages 36-40.

2015 was the year when the MAID (medical aid in dying, aka physician assisted suicide and even lethal injections in Quebec) Act  took effect. The article is about physicians and MAID in the city of Laval in Quebec, Canada that has a population of about 435,000.

The study made news when it reported that after 18 months, conscientious objections from physicians against providing MAID were far more frequent than anticipated. Prior to the law, 48% of doctors said they would participate, 30% with conditions and only 28% said they would never participate.

Afterwards, 77% of the physicians getting MAID requests refused to actively participate, all of them using the conscientious objection clause, even though the study claimed the majority (72%) were in favor of MAID with only 13% of the doctors neutral or ambivalent.

The most common reason given for refusal was “too much of an emotional burden to bear, followed by a perception of lack of clinical expertise, and a fear of being stigmatized by peers or by people in general for participating.”

Other reasons included not adding to an “already heavy clinical burden”, MAID being “a very time-consuming process” and “medical legal concerns”.

The seemingly obvious takeaway from these surprising refusals is that participating in the killing of patients is much harder in reality than approving gauzy claims of just relieving suffering.

CRITICISM OF “CONSCIENTIOUS OBJECTION”

However, the authors did another study “to explore what ‘conscientious objection’ meant to these (refusing) physicians.” Although less than half of the refusing doctors participated in this second study, the authors conclude that legal “conscientious objection” is mostly being used for “reasons other than moral or religious grounds”. They contend that reasons like “high emotional burden, a perception of incompetence to perform the procedure and time constraints” do not meet the classic definition of conscientious objection on moral or religious grounds. They also worry that with the currently low physician participation in MAID, there is a “risk of a looming crisis in access to timely MAID services”.

The authors cite arguments by those who oppose conscientious objection that the authors consider “just as valid” as arguments in favor of conscientious objection:

1. “Consequences for patients” leading to denial of access or delay in treatment.

2.  “Costs for healthcare systems: while the possibility of referring the patient to a colleague exists, this can generate additional costs and prove to be less efficient.” (Note that Canada has a government-controlled health care system.)

3. “A heavy burden on the shoulders of a reduced number of physicians who accept to perform” certain acts.

4.”The importance of professionalism” which means “caring for patients, no matter the type of care required”.

CONCLUSION

These  two studies have important implications regarding conscience rights for all health care providers, even those outside the MAID policies in Quebec.

Just last April, the very influential Dr. Ezekiel Emanuel co-wrote in the New England Journal of Medicine article “Physicians, Not Conscripts-Conscientious Objection in Health Care” that:

“Health care professionals who conscientiously object to professionally contested interventions may avoid participating  in them directly, but, as with military conscientious objectors, who are required to perform alternative service, they cannot completely absent themselves from providing  these  services.  Conscientious objection still requires conveying accurate  information  and  providing  timely  referrals to ensure patients receive care.”

and

“Health care professionals who are unwilling to accept these limits 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. “ (All emphasis added)

It is ironic how deliberate death decisions defended on the basis of “choice” can easily become “no choice” for those health care professionals dedicated to really caring for patients instead of killing them.

And all of us-whether we are patients or health care professionals-must understand that legalizing physician-assisted suicide inevitably leads to further erosion of medical ethics and thus crucial protections for ourselves, our loved ones and society.