Legal Safeguards, Burdensome Obstacles and Conscience Rights

After I wrote last week’s blog “The New Federal Conscience and Religious Freedom Division” , I was surprised by this criticism: “arguing conscience can make doctors (and others) look whiney, as opposed to heroic” and give assisted suicide supporters “an easy platform to describe them as selfish and out of touch ideologues who want to make their parents suffer.” But this comment did make me think.

Actually, I felt horror, intense sadness and fear when, as I wrote in the blog, I was “threatened with termination (after the fact) for refusing to participate in an unethical health care decision years ago.” I was trying to save my patient from being deliberately terminated with an overdose of morphine that neither he nor his family requested but I found no support in the “chain of command” at my hospital. I could not pass this patient to another nurse so I basically stopped the morphine drip myself, technically following the order “titrate morphine for comfort, no limit”.

Especially as the sole support of three children with no family support, I feared losing my job but I could not participate in good conscience for my patient’s sake. I did not feel either heroic or whiney.

Ironically, a later autopsy requested by the family showed no lethal condition or brain injury as suspected when the patient had a crisis after routine surgery.

I’ve known other doctors, nurses and therapists who have similarly put their jobs on the line for the real reason for conscience rights: protection of patients. We are a thinning white line in the face of expanding demands for deliberate death as a civil right while our US and other countries’ professional organizations are changing or considering changing their positions against medically assisted suicide and euthanasia.

If we who refuse to terminate our patients are harassed or eliminated from our professions and future potential students discouraged from choosing such a profession, patients will be denied the choice of such medical professionals and a final barrier will be broken in the lethal flood to follow.

WHEN “LEGAL SAFEGUARDS” BECOME “BURDENSOME OBSTACLES”

Already there are impatient calls to expand medically assisted suicide and euthanasia.

Thaddeus Pope, JD, PhD, the influential Director of the Health Law Institute and Professor of Law at the Mitchell Hamline School of Law in Saint Paul, Minnesota and writer of the Medical Futility Blog, wrote an article last December titled “Medical Aid in Dying: When Legal Safeguards Become Burdensome Obstacles” for the American Society of Clinical Oncology Post. (According to ASCO, it “has taken no official position on medical aid in dying”.)

Mr. Pope notes the “uniformity and similarity” of the six current medically assisted suicide statutes but brings up four so-called “safeguards” affecting the “next-generation issues: the justifiability of prevailing eligibility criteria and procedural requirements” that will allegedly need to be addressed. (Emphasis added)

The first is “Expanding From Adults to Mature Minors” which Mr. Pope characterizes as “unduly restrictive” in part because “Many states already allow terminally ill mature minors to withhold or withdraw life-sustaining treatment”. (Emphasis added)

Mr. Pope’s second issue is “Expanding From Contemporaneous Capacity to Advance Directives”, stating that “All six statutes require that the patient concurrently have both a terminal illness and decision-making capacity. But this dual mandate excludes many patients who have no other exit options” such as those with “advanced dementia”. (Emphasis added)

The third issue he cites is “Expanding From Terminal Illness to ‘Reasonably Predictable’” because:

“(T)his rigid time frame excludes patients with grievous and irremediable conditions that cause suffering intolerable to the individual. Some medical conditions may cause individuals to irreversibly decline and suffer for a long period before dying. Instead of demanding a strict temporal relationship between a medical condition and death, these statutes might be more flexible and instead require that death be ‘reasonably predictable’.” (Emphasis added)

Mr. Pope’s final issue is “Expanding From Self-Ingestion to Physician Administration”:

“First, it excludes patients who lose the ability to self-administer before they otherwise become eligible. Second, self-ingestion is associated with complications. For example, around 3% of these patients had difficulty ingesting or regurgitated the medication. Other patients regained consciousness after ingestion.” (Emphasis added)

And, as in most of the previous issues, Mr. Pope approvingly cites the rapidly expanding assisted suicide situation in Canada:

“Canadian patients avoid all these problems (with self-ingestion), because physicians usually administer the medication. As a result, only 5 of more than 2,000 Canadian patients who used medical aid in dying self-ingested the lethal medication.” (Emphasis added)

Ironically, there is one so-called “safeguard” that Mr. Pope would like to see tightened:

“that the prescribing or consulting physician refer the patient “for a mental health specialist assessment” if “there are -indications of a mental disorder.” Yet prescribing and consulting physicians have referred only 5% of medical aid in patients who are dying. Leading experts argue that this rate is probably too low relative to the expected rate of impaired judgment. Others are “surprised by how rarely the prescribing or consulting physicians refer patients for a psychiatric consultation.” (Emphasis added)

This discrimination in suicide assessment is not acceptable for any suicidal person-except now, of course, for a person requesting medically assisted suicide.

CONCLUSION

Without a strong resistance movement, these proposals are only just the next step in the death agenda. So far, much of the public, government officials and medical professionals have been shielded from the real truth by euphemisms and false reassurances from assisted suicide supporters, a mostly sympathetic mainstream media and often spineless professional and health care organizations. We all must educate ourselves to speak out before it is too late.

The New Federal Conscience and Religious Freedom Division

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

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.