Is there a “New” Catholic Medical Ethics?

A few years ago, a middle-aged prolife nurse friend of mine had a sudden cardiac arrest after her mother died but was resuscitated. She was taken to the same Catholic hospital where I received my nursing education. She wound up sedated and on a ventilator to help her breathe, along with a feeding tube. Her 24 year old son wanted all efforts made to save her and several of us volunteered to help if and when she returned home.

Instead and after a week or  two, her son was urged to remove her ventilator but, even then, she kept breathing even with the sedation medication used to control her tremors. But the son was horrified to see that her feeding tube was removed at the same time as the ventilator and against his wishes. The staff insisted that he agreed to this and that it was documented in the computer. He insisted he never agreed to this and demanded that the feeding tube be reinserted but the staff said they could not without a doctor’s order.

The son stayed for hours waiting for a doctor but the staff said the doctor was busy. A nurse from hospice came in and pushed for hospice but the son said he wanted to take his mother home eventually so he and the volunteers could care for her. The hospice nurse then told him that his mother was dying and her organs were failing.

I happened to be there at the time and, as a critical care nurse myself, I told the hospice nurse that I saw that my friend’s vital signs were normal and her kidneys were obviously functioning. I also questioned the dangerous increase in her sedation medication after her ventilator was removed because it could suppress her breathing. I was ignored. With a heavy heart, I lhad to leave to work my night nursing shift at another hospital but I told the son to call me if the doctor did not come.

The next morning, the son called me to tell me that the hospital just called to tell him his mother was dead.

He had stayed for several hours after I left but finally went home to get some sleep, thinking his mother was stable. He was devastated to later learn that his mother had been transferred to hospice against his wishes after he left. My friend then died a few hours later. She never got her a feeding tube or her sedation lowered or stopped. And she tragically died alone.

I still have nightmares about this.

THE “NEW” CATHOLIC MEDICAL ETHICS

While medically futile treatment has long been accepted as medically useless or gravely burdensome to the person, we now see a new bioethics with “quality of life”, economics, societal and family burdens, etc. included in the determination of medical futility.

This January, I was horrified to find that the influential Catholic magazine Commonweal published an article titled “Giving Doctors a Say-Futility and End-of-Life Ethics”  that also injects “respect for physicians as moral agents” to defend the rationale behind the (often secret) futility policies in Catholic hospitals  by citing cases like the Charlie Gard and Simon Crozier cases where medical care was removed from two infants with life-threatening conditions against the parents’ wishes.  In Charlie Gard’s case, the medical care was withdrawn by court order and in Simon Crozier’s case the medical care was withheld without the parents knowledge. Both boys died.

Tragically, the outrageous Simon Crosier case occurred in the same Catholic hospital where I once worked and where my daughter with Down Syndrome and a critical heart defect was made a Do Not Resuscitate behind my back and against my expressed wishes.

As a nurse and a mother, I was shocked by the Commonweal article but not surprised.

I have been writing about the deterioration in medical ethics even in Catholic institutions for many years.

In the Commonweal article, Michael Redinger (co-chair of the Program in Medical Ethics, Humanities at Western Michigan University , and Law} defends medical futility and criticizes the Simon’s Law passed in the Missouri legislature last year to prohibit “any health care facility or health care professional from instituting a do-not-resuscitate or similar order without the written or oral consent of at least one parent or legal guardian of a non-emancipated minor patient or resident”.  (Emphasis added)

Instead, Professor Redinger writes that “These efforts, collectively referred to as ‘Simon’s Law’ legislation, are well-intentioned but misguided”.

His Commonweal article concludes that:

“Given the coordinated efforts of Right to Life groups across the country and their ties to the Catholic Church, it is necessary to begin a broader conversation about the incompatibility of such laws with church teaching. Such a conversation would help guide individual Catholics at the end of life, and support Catholic bishops in their oversight of Catholic hospitals. Even better, it would relieve the medical staff at Catholic hospitals from the immense moral distress that comes from violating our oath to do no harm.” (Emphasis added)

 

HOW COULD THIS HAPPEN?

After years of research and my own experiences with Catholic hospitals and staff, I have seen the tremendous influence of the Catholic Health Association which boasts that it’s health care ministry comprises more than 600 hospitals and 1,600 long-term care and other health facilities in all 50 states,  When I received my nursing education in a Catholic hospital in the late 1960s, rigorous ethics were an important part of our nursing education with “do no harm” to patients, report our mistakes, never lie, advocate for our patients regardless of age, socioeconomic status or condition, etc. incorporated as standard requirements. We happily took the Nightingale Pledge as our standard of excellence.

But now, as Catholic Health Association ethicists Fr. Patrick Norris and the late Fr. Kevin O’Rourke have stated in 2007 regarding futility :

“end-of-life decisions exemplify the principle of double effect, (wh)erein the withholding/withdrawing of life support is either morally good or neutral, the intention of the act being to remove either an ineffective or gravely burdensome treatment. The evil effect of the death is not a means to achieving the good effect (avoiding an inappropriate treatment), and, given appropriate circumstances, the good achieved is commensurate with the harm that occurs as a foreseen but unintended effect of a good action. The invocation of the principle of double effect in these cases properly distinguishes between physical causality and moral culpability.” (Emphasis added)

CONCLUSION

I have been called by many distraught relatives who have said they thought their loved one was “safe” in a Catholic hospital but saw problems. One case involved an older woman who had a stroke (cerebral vascular accident) and was in a coma and expected to imminently die but continued to live several days later with normal vital signs. The woman had a pro-life living will to reject life-sustaining treatment, including a feeding tube, if she had a “terminal event” and was imminently dying. The relative wanted to know if this was indeed a “terminal event”.

I asked if the woman was on a morphine infusion. She was and hadn’t seemed to be in pain. I explained that the sedation could account for her coma and suggested that they ask the doctor about trying to slow or stop the morphine to see.

The relative called back to say that the morphine was stopped and that the woman started to wake up and even seemed to recognize them. However, the Catholic chaplain told the woman’s sister who was her power of attorney for health care that her apparent response was only a reflex. The sister ordered the morphine turned back on.

The family was upset and considered legal action but decided that this would split the family so they gave up. Not surprisingly, the woman eventually died 2 weeks later.

After this case, I later wrote a blog “Living with ‘Living Wills’ about the little-known pitfalls of advance directives and how they could work against what a person wants.

The bottom line is that everyone must remain vigilant when they or a loved one becomes seriously ill, regardless of the hospital or institution. It is also important not to be afraid to ask questions.

There are also non-denominational, non-profit groups like Hospice Patients Alliance  and the Healthcare Advocacy and Leadership Organization (I am on the advisory board) that have much useful information and resources for patients, families and the public.

But without a change in policies and attitudes, those of us medical professionals who believe we should never cause or hasten death may become an endangered species as well as our medically vulnerable patients.

Lethal Problems with Medical Futility and Disability Bias

In 2018,  Chris Dunn survived a freak diving accident that left him paralyzed, mostly blind and on a ventilator to breathe.  He spent most of the next year in an ICU in rural Maine.

Unable to see, eat, breathe or move on his own, the 44 year old father and concrete work spent his days in bed listening to the History Channel and hoping for a chance to show he could do more.

Efforts to find a rehab center failed. Even worse, hospital administrators and others were encouraging Chris’s mother Carol to put him in hospice to die.  As the article states:

“Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. ‘There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’ says Carol. ‘I mean, what’s a mother to do with that?’”  (Emphasis added)

However, Carol refused to give up trying to find help for Chris and after 7 months, finally contacted the United Spinal Association. Jane Wierbicky, a longtime nurse and a member of the Association’s Resource Center team worked to help find a rehab center in Atlanta.

Now Chris only uses the ventilator a few hours a night, got outdoors to catch a fish, and returned home to spend Thanksgiving with his mother and girlfriend.

With the help of his mother and a team of advocates, Chris hopes to eventually live in an accessible apartment.

Medical care for Chris was not futile.

MEDICAL FUTILITY

The National Council on Disability defines “medical futility” as

“an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem ‘futile’ or ‘nonbeneficial’. A “medical futility decision” is a decision to withhold or withdraw medical care deemed “futile” or “nonbeneficial.” (Emphasis added)

Because of my professional and personal experiences with disability bias as well as my volunteer work with people with disabilities, I have seen firsthand the potentially lethal effects of medical futility decisions based on disability. I have been writing on this topic for years, most recently on Missouri’s Simon’s Law enacted after the parents of a baby with Trisomy 18 and a heart defect who died later found out that doctors had ordered a “Do Not Resuscitate” and withheld life-sustaining treatment without their knowledge due to a secret medical futility policy at the Catholic hospital treating their son.

Recently, I found out that the National Council on Disability just published a 82 page comprehensive report titled “Medical Futility and Disability “  as part of a five-report series on the intersection of disability and bioethics.

In a letter to President Trump, the Council chairman states that the series:

“focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

and notes that:

“In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.” (All emphasis added)

The Council identifies four factors that are influencing the futility debate today: “Advanced life-saving medical technology, Changes in healthcare reimbursement, Evolving concepts of patient autonomy and the Rise of the right-to-die movement”.

The report also extensively explores the legal issues  and several court decisions involving medical futility like the Terri Schiavo and Haleigh Poutre cases.

STATE LAWS

The Council report also evaluated current state laws regarding medical futility decisions and found only 11 with strong patient protections, 19 without patient protections, 19 with weak patient protections, and 2 with time-limited patient protections.

Further complicating the state laws is the lack of transparency for patients or other family members regarding an institution’s medical futility policies. Hospitals are rarely transparent with their medical futility policies, as in the Simon’s Law case. The report is right when it states that “the disclosure of medical futility policies is essential to providing patients, their surrogates, and their families with the information they need to protect their rights and ensure accountability”.

The Council also notes that “Disability nondiscrimination laws, including the ADA and Section 504 of the Rehabilitation Act, provide a viable, yet largely unexplored vehicle for enforcing the rights of people with disabilities in the medical futility context.”

The report ends with recommendations for Congress, the executive branch, medical and health professional schools, professional accreditation bodies, healthcare insurers and state legislatures to combat the problem of disability bias in healthcare.

CONCLUSION

One of the reasons I chose to become a nurse decades ago was the strong ethical principles in medicine. We were educated to treat all patients to the best of our ability regardless of race, disability, socioeconomic status, etc.  “Quality of life” was something to improve, not judge. The traditional hospice philosophy was to neither hasten nor prolong dying.

But over time, I saw ethics change. As the report itself notes, the advances in technology, changes in health care reimbursement, evolving concepts of patient autonomy and the rise of the right-to-die movement led to radical changes in both law and medical ethics.

The concept of medical futility was no longer limited to medically certain circumstances of treatment ineffectiveness but, all too often, also to the patient’s (and sometimes the family’s) perceived “quality of life”.

Such disability bias is often unrecognized, even by the medical professionals caring for the person, but it is a real bias that must be eliminated in our society.

I admire people like Chris Dunn and his determined mother who show us the possibilities when people with even severe disabilities get a chance to have the best life possible.

 

 

 

 

 

 

 

 

Missouri Legislature Passes both “Simon’s Law” and the “Missouri Stands for the Unborn Act”

I feel so fortunate to be living in a pro-life state like Missouri!

This month, the Missouri legislature passed both Simon’s Law and the Missouri Stands for the Unborn Act” . Both are expected to be signed soon by Governor Mike Parson.

SIMON’S LAW

When baby Simon Crosier was born with Trisomy 18  and a heart defect in 2010, his parents and brothers fell in love with him despite his life-threatening diagnosis and the medical community’s opinion that Trisomy 18 is “incompatible with life”.

However, just days before three month old Simon was scheduled to see a cardiac surgeon, his parents begged for help at the Catholic hospital treating Simon when his condition started to deteriorate. They were shocked when the staff did not intervene. They did not know that the hospital had made their baby a Do Not Resuscitate and that Simon was given only so-called “comfort feeds” due to a secret futility policy. They had to helplessly watch as Simon died in their arms.

Heartbroken and outraged but determined that this would not happen to another child, the Crosiers went to legislator Bill Kidd who formulated Simon’s Law. After five long years of frustration even getting the bill out of committee, Simon’s Law was finally and unanimously passed in the Missouri legislature and is awaiting Governor Mike Parson’s signature.

The law prohibits “any health care facility or health care professional from instituting a do-not-resuscitate or similar order without the written or oral consent of at least one parent or legal guardian of a non-emancipated minor patient or resident.”

Due to the Crosiers’ selfless efforts to protect children with disabilities like Simon’s by writing the book “I am Not a Syndrome-My Name is Simon” and speaking around the country, now Kansas, Arizona and South Dakota have also passed a Simon’s Law.

And stunningly, as I wrote in my blog “Parent Power”, even doctors have started to wake up: In 2016, Dr. John Lantos wrote an editorial in the Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

Simon’s Law is truly an act of love.

THE “MISSOURI STANDS FOR THE UNBORN ACT”

Also this month, the Missouri legislature passed the “Missouri Stands For the Unborn Act”., the strongest pro-life bill in Missouri history. Like Simon’s Law, it is also awaiting Governor Mike Parson’s signature.

According to Missouri Right to Life, the legislation will:

  • ban abortion at detection of a heartbeat at 8 weeks, if overturned
  • ban abortion at 14 weeks, if overturned
  • ban abortion at 18 weeks
  • ban abortion when the baby can feel pain
  • require 2nd custodial parent notification
  • require Missouri informed consent requirements for out-of-state abortion referrals
  • increase required malpractice insurance to 3 million dollars
  • increase to 70% of the donation, tax credits for donations to Pregnancy Resource Centers and lift the limit on the amount of the donation
  • ban abortion in Missouri when Roe v. Wade is overturned
  • ban abortion for race, gender and Down Syndrome diagnosis

Legal challenges from groups like Planned Parenthood are expected.

CONCLUSION

Both of these future laws are the result of decades of effort to protect life at all stages.

It’s been a long, difficult road but with the persistence of dedicated pro-life people, we can change not only laws but also hearts and even the culture of our society.

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.

 

35 Years after Baby Doe Continued: The Simon Crosier and Charlie Gard Cases

Last week, I wrote about Baby Doe and my daughter Karen and how both were medically discriminated against 35 years ago because they were born with Down Syndrome. The ethical rationale in both cases help set the stage for the legalized assisted suicide/euthanasia we struggle against today.

Unfortunately, the legal right to live for children with disabilities and their parents continue to be under attack today with the cases of Simon Crosier and Charlie Gard.

SIMON CROSIER

Last August, I wrote a blog titled “Parent Power” about the efforts by some legislators in Missouri and Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility policies in even some Catholic hospitals that led to the death of Simon Crosier, a baby born with Trisomy 18.

Since that blog, Kansas finally did pass Simon’s Law but in Simon’s home state of Missouri, the bill is still stuck in committee even though new information about the life expectancy and prognosis for such children led to an opinion editorial in the prestigious Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

The fight for Missouri’s Simon’s Law will continue.

CHARLIE GARD

On June 30, 2017, the parents of 11 month old Charlie Gard lost their appeal to European Court of Human Rights to keep their son with a rare genetic disorder on life support and take him to the US to try an experimental treatment. The appeal was filed after Britain’s Supreme Court decided to let the hospital remove Baby Charlie’s life support, finding that prolonging Charlie’s life was “not in his best interests.”

Baby Charlie has a rare genetic disorder affecting his muscles and brain that has caused  brain damage, seizures and prevents him from breathing on his own.  A neurologist in the US has suggested an experimental nucleoside treatment that might, in theory, offer some benefit although the treatment has not been tried before in a situation like Baby Charlie’s.

On Facebook, Charlie’s parents said that they were “heartbroken” and aghast that the hospital would not even allow them to take their son home to die.

Charlie’s parents have been fighting for months for the right to take their son to the US try this experimental treatment. By the time of the court decision, $1.7 million had been raise through crowdfunding media to cover expenses.

Unlike the Simon Crosier case, the withdrawal of treatment decision by the hospital was not secret.

Apparently under British law, parents do have the right to make decisions about the treatment of their children unless the treatment is not in a child’s “best interests” and usually it is parents who refuse treatment for their children on moral of religious grounds who end up in court.

The Charlie Gard case has caused enormous conflict among ethicists, lawyers and even religious leaders across the world as well as the general public.

However, in the last few days, Baby Charlie and his parents gained support from two important people: Pope Francis and US President Donald J. Trump.

At first, a Vatican official issued a statement on Baby Charlie that “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” But a few days later and after much criticism of the first statement, Pope Francis expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected. (Emphasis added)

Then, after a July 3, 2017 offer by President Trump to help, an unnamed US hospital came forward to offer free treatment to Baby Charlie.

CONCLUSION

On their GoFundMe page , Baby Charlie’s parents wrote:

If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx (Emphasis in original)

Over my decades of nursing experience, I have seen people decide to try experimental treatments because they hoped for a cure, improvement or at least to help doctors learn more that may help someone else later.

Sometimes the treatments worked and sometimes they didn’t but after talking with these patients (or parents), I could not help but admire their love, courage, faith and determination.

May God bless Baby Charlie, Baby Simon and their parents!

Should Ethics Committees be Death Panels?

I volunteered to serve on a newly started hospital ethics committees in the 1990s. While I wanted to help analyze difficult cases and serve as a resource for hospital personnel with ethical concerns, I became increasingly alarmed when I saw cost containment and judgments based on “quality of life” brought up as decisive factors by others on the committee.

I understood more when I researched the beginnings of ethics committees.

BACKGROUND

After numerous failed attempts to legalize euthanasia, the Euthanasia Society of America invented the “living will” in 1967 as a first step in gaining public acceptance of euthanasia by promoting a so-called “right to die”. The group achieved much success by publicly promoting “living wills” as a patient rights document that would give people and/or their families  choice and control at the end of life or, especially after the 1976 Karen Quinlan case, if their quality of life was considered too poor.

Karen Quinlan’s case (where despite predictions,  she continued to live for years after her ventilator was removed) effectively extended the “right to die” to non-terminally ill people said to be in a “persistent vegetative state”, a term invented in 1972 to describe brain-injured people who were awake but assumed unaware.

The later cases of Nancy Cruzan and Terri Schiavo  further extended the “right to die” to withdrawal of feeding tubes and other basic medical care.

Eventually the Euthanasia Society of American became The Society for the Right to Die and finally evolved into Compassion and Choices and the “right to die” became “death with dignity” by lethal overdose.

ETHICS COMMITTEES

Ethics committees in hospitals began to emerge after the Quinlan case as an alternative to controversial court cases and became more prevalent in the 1980s, especially after the Baby Doe case in 1982. That case involved a newborn boy with Down Syndrome and an easily correctable defect that prevented him from eating safely. The parents refused the surgery and were upheld by a judge. An appeal was started but the baby died of starvation and dehydration before his appeal could be heard. Disability, pro-life and other groups and individuals were outraged.

Concerns about lethal medical discrimination against infants with disabilities resulted in the Baby Doe Regulations mandating maximal care to any impaired infant, unless certain exceptions are met.

However, there was much medical and legal opposition to these rules and:

“By the end of 1984,  the American Academy of Pediatrics and the American Hospital Association issued statements supporting the use of interdisciplinary ethics committees as an alternative to governmental investigation in such cases.” (Emphasis added)

AN UNEXPECTED PROBLEM

But a surprising development happened on the way to privatizing life and death decisions through ethics committees.

Some people and families resisted and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in guilt or dysfunctional family relationships.

However, these doctors and ethicists were shocked when in 1991, a court ruled in favor of the husband of Helga Wanglie when he insisted that treatment be continued for his wife despite a “persistent vegetative state” diagnosis.

That court decision was widely criticized in ethics circles and in 1999, Texas enacted a medical futility law.

THE TEXAS ADVANCE DIRECTIVES ACT

In 1999, Texas became the first state to expressly permit doctors to stop life sustaining treatment without consent after a review process by an ethics committee. According to the Texas Advance Directives Act, when care is deemed “futile” or “inappropriate” and the patient or family disagrees,  the patient or family is given 10 days to find another health facility for the patient and pay for “any costs incurred” in the transfer. “If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. “ (Emphasis added)

Thus an ethics committee becomes the equivalent of a death panel.

This kind of ethics committee overreach has now spread far beyond Texas. For example in 2002, I was involved in a similar a case in Missouri involving a brain-injured man despite the state not having a Texas-style law.  It was difficult to find another health care facility to accept the man within the 2 week deadline given by the hospital but ultimately the man not only survived but recovered after the transfer.

The Texas law is now being challenged in the case of Evelyn Kelly, individually, and on behalf of the estate of David Christopher Dunn v Harris Methodist Hospital, a case where a terminally ill, conscious man’s mother fought the ethics committee’s decision to remove his ventilator.

Although Mr. Dunn has since died, the case continues on the question of whether the Texas law is constitutional or not.

In the summary judgement motion filed, Ms. Kelly and her lawyers state that the ethics committee’s action “is an alarming delegation of power by the state law” and “is a far cry from the due process intended to protect the first liberty mentioned in Article 1, Section 19 of the Texas Constitution and that of the Fourteenth Amendment”. (Emphasis added)

Mrs. Kelly and her lawyers make a good point. How can a life and death decision be automatically delegated by law to an unregulated, unaccountable group of individuals outside the legal system?

Even worse, how can the right to live have less legal protection than the “right” to be dead?

The answers to these questions are critically important.

Parent Power

During the last few months, I have been writing about efforts by some legislators in Missouri and now Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility polices in hospitals that led to the death of Simon Crosier, a baby with Trisomy 18. I even wrote my own testimony in support of the bill.

But now in a stunning development, Dr. John Lantos wrote an opinion editorial in the Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment:

Thirty years ago, pediatric residents were taught that trisomy 13 and 18 were lethal congenital anomalies. Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy.

But with social media, this changed.  Parents share stories and videos, showing their happy 4 and 5 year old children with these conditions. Survival, it turns out, is not a rare as once thought.”

This survival is even more impressive in light of a related JAMA article titled “Outcomes of Surgical Interventions in Children with Trisomies 13 and 18”   which stated that although “The median age of survival was 13 and 9 days, respectively, in children with trisomies 13 and 18”:

Among children with trisomies 13 and 18 who lived to 6 months, survival at age 10 years was 51% and 60%, respectively.

Note that what is changing the former medical perception of “incompatible with life” is not any new medical advance but rather loving parents who refused to accept the predicted death sentences for their babies, insisted on treatment and then used Facebook and other social and regular media to show off their children’s real lives. I call this Parent Power and it is based on love.

That power may help bills like Simon’s Law to finally pass.

DOWN SYNDROME (Trisomy 21)  AND PARENT POWER

I personally  learned about parent power when my daughter Karen was born in 1982 with Down Syndrome and a severe heart defect. 20+ years before Karen’s birth,  children with Down Syndrome were routinely institutionalized as accepted medical practice. But by the time Karen was born, almost all newborns with Down Syndrome went home with their parents and eligible early childhood programs.

What caused this dramatic change?

Again, it was primarily parent power.

Parents like Kay and Marty McGee not only ignored the standard medical advice to institutionalize their daughter but also fought for support and help for their daughter and others like her. They eventually founded the National Association for Down Syndrome in 1960 (http://www.nads.org/about-us/history-of-nads/ )

By working with other parents and reaching out to willing educational, legal and medical professionals, they helped change medical attitudes, the educational system and public acceptance of people with Down Syndrome who are now achieving goals once thought impossible.

Although it continues to be a long-term effort to ensure non-discriminatory medical treatment for people with Down Syndrome or other disabilities, people with Down Syndrome who were once predicted to die at an early age now have a life expectancy of 60 years and are achieving goals once thought impossible.

THE FIGHT  IS STILL FAR FROM OVER

Unfortunately and on the heels of the welcome editorial comment on babies with Trisomy 13 and 18, comes the news about the tragic circumstances surrounding the death of little Israel Stinson.

Two-year old Israel died after a judge suddenly and unexpectedly rescinded a court order that prevented a California hospital from removing the ventilator from little Israel before his parents could get an opinion from another neurologist after conflicting medical opinions about whether or not Israel was brain dead.

In this case, parent power was overturned by a single judge after the family thought that Israel was protected by a court order.

Not only is this personally tragic for Israel and his parents but this development also serves to devastate the crucial trust needed in our medical and legal systems.

 

 

 

Can We Choose to Live?

In a 2016 study “What does “futility” mean? An empirical study of doctors’ perceptions” in the Medical Journal of Australia distilled this definition from the majority of responses:

Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of:

  • improving quality of life;

  • sufficiently prolonging life of acceptable quality; or

  • bringing benefits that outweigh the burdens of treatment

Alarmingly, the article also states: “Doctors may reach a view that treatment is futile, informed by their definition of futility and clinical indicators such as functional status, disease severity, and age.” (Emphasis added.)

Over 10 years ago, I wrote an article “Futility Policies and the Duty to Die” about little-known futility policies being promoted, even in Catholic hospitals. These policies allow doctors and ethics committees to overrule patients’ or families’ decisions to continue  care or treatment when a person’s prognosis or “quality of life” was considered too poor.

In February, I wrote about the still not passed Simon’s Law here in Missouri that exposed the secret futility policies that led to the death of Simon Crosier, a baby with Trisomy 18.

However, a couple of weeks ago, a horrified nurse friend showed me two health care directive she recently received as a patient. One was from a Catholic  health care facility and the other was a standard Missouri durable power of attorney directive . The wording in both made her question whether such futility policies were now being incorporated into such directives.

I understand her concern.

THE CATHOLIC  DURABLE POWER OF ATTORNEY FOR HEALTH CARE DIRECTIVE

A person signs such a directive in order to have a family member or other trusted person make health care decisions when they are incapacitated. An legally incapacitated person is  defined as  a “Person unable to make rational decisions or engage in responsible actions. Mental and/or physical deficiency, disability, illness, drug use causing temporary or permanent impairment.”

“Living wills” and other advance health care directives,  invented by so-called “right to die” groups, claimed to give people the power to choose at the end of life

Remembering the prolonged dehydration deaths of Nancy Cruzan and Terri Schiavo, two non-terminally ill but severely brain-injured women said to be in the so-called “persistent vegetative state”, a person might sign a directive but want to prevent such a terrible death for himself or herself.

However, while this Catholic directive has a section to make such a decision, it also an asterisked section attached to both withdrawal and refusal of withdrawal:

I DO NOT AUTHORIZE my Agent/Proxy to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water) as  permitted by law.*

*(In a XXXXX health care facility, nutrition and hydration may be withheld or withdrawn if I have an irreversible condition which is end-state or terminal AND if the means of preserving my life have likely risks and burdens which outweigh the expected benefits or are disproportionate without a reasonable hope of benefit.) (Emphasis added)

Using such terms as “end-state or terminal”  could, for example, apply  not only to a “persistent vegetative state” but also to Alzheimer’s or other dementia. “Artificially supplied” could encompass a simple IV while the asterisked section inexplicably does not even include the words “artificially supplied” before the food and water.  Along with using terms like “disproportionate without a reasonable hope of benefit” without stating who makes that determination or what the criteria is for benefit, the average person could be understandably confused in a real life situation.

THE MISSOURI DURABLE POWER OF ATTORNEY DIRECTIVE

Many, if not most, Missouri hospitals have this directive.

This directive has a section stating:

If I am persistently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or terminal illness or condition, I direct that all of the life-prolonging procedures that I have initialed below be withheld or withdrawn. (Emphasis added)

This list includes not only “artificially supplied nutrition and hydration” but also antibiotics, CPR and “all other life-prolonging medical or surgical procedures that are merely intended to keep me alive without reasonable hope of improving my condition or curing my illness or injury.” (Emphasis added) Note that, according to the directive, a person need not have a terminal illness or be in a coma to qualify for withdrawal.

The next section can seem reassuring if a person has qualms about a decision to withdraw treatment or care being made too quickly or influenced by age or disability.  However, the directive only states that such treatments or care may  be tried-at the doctor’s  discretion-for an undefined “reasonable”period of time before withdrawal. Unfortunately, this section also includes automatic consent to pain relief, even in dosages that can suppress breathing and appetite as in terminal sedation:

3. However, if my physician believes that any life-prolonging procedure may lead to a recovery significant to me as communicated by me or my Agent to my physician, then I direct my physician to try the treatment for a reasonable period of time.  If it does not cause my condition to improve, I direct the treatment to be withdrawn even if it shortens my life.  I also direct that I be given medical treatment to relieve pain or to provide comfort, even if such treatment might shorten or suppress my appetite or my breathing, or be habit-forming. (Emphasis added)

The Catholic health directive also includes this section, almost verbatim.

CONCLUSION

With the help of the media, mentally disabling conditions like Alzheimer’s are often portrayed to the public as a fate worse than death and a terrible burden on a family. Tragically, the “right to die” mentality has led many people to conclude that they should die if they develop such conditions or, if dying, that their death may be accelerated to spare their families.

As a nurse who has seen the problems with advance directives firsthand, I helped design my own durable power of attorney advance directive without exemptions or checkoffs that could be misused or misinterpreted. I also educated my husband and family about the medical ethics involved.

As I wrote in my blog Living with “Living Wills”, there are better alternatives available to the standard kinds of advance directives even though no directive is foolproof.

Adequately informed consent is required for legal consent to surgery. Shouldn’t advance directives that involve life or death be held to the same standard before signing?

 

 

My testimony for Simon’s Law

On February 16,  a hearing was held by the Health committee of the Missouri Legislature on Simon’s Law.

Here is my submitted testimony to Dr. Frederick and all the committee members:

I am a past member of the Down Syndrome Association in St. Louis, an RN and legal nurse consultant and most importantly, the mother of a daughter who had special needs.
I cannot be at the hearing tomorrow but please accept my testimony in favor of Simon’s Law:

In September 1982, I gave birth to a beautiful baby girl we named Karen. Karen was born with both Down Syndrome and a severe heart defect called a complete endocardial cushion defect. A pediatric cardiologist was called in and even before I left the recovery room, he gave me the bad news about our Karen’s heart defect and even said that it was inoperable. He said to take Karen home where she would die in 2 weeks to 2 months.

This doctor turned out to be wrong. Further testing revealed that Karen’s heart defect could be fixed with one open heart operation and she had a 90% chance of survival.

My husband (a doctor) and I (an ICU nurse) were determined that our daughter receive the best medical care possible for her heart condition and without bias because she had Down Syndrome. We knew about the recent Baby Doe case where the parents of baby boy with Down Syndrome and an easily correctable tracheoesophageal fistula refused surgery so that their baby would die. The case went to court and a judge ruled that the parents could make that lethal choice. As medical professionals, we were appalled by this case but at least we could make sure that our daughter would have her chance at life. Or so I thought.

The bias against children like Karen soon became apparent when the cardiologist said he would support us “100%” if we chose to let our Karen die without surgery. I had to insist that Karen be treated for her heart defect the same way any other child would be treated for the same heart defect. To do otherwise was medical discrimination and illegal.

Then, the surgeon recommended for Karen’s pre-op heart catheterization was overheard questioning the wisdom of even treating “all these little mongoloids”! Another doctor sympathetically told us that “people like you shouldn’t be saddled with a child like this.” We were stunned by this negative view of children with Down Syndrome.

Later on when Karen developed a pneumonia that was being successfully treated in the hospital, I found out that my trusted pediatrician had even made Karen a “Do Not Resuscitate” behind my back because I “was too emotionally involved with that retarded baby”. The DNR was rescinded and we took Karen home but I found it hard to trust any doctor after that.

Unfortunately, Karen developed another bout of pneumonia and died of complications just before her scheduled open-heart surgery. But even at the very end, when Karen was apparently dying, a young resident physician “offered” to pull all her tubes so that she would die as soon as possible. I reported this young man to the chief of pediatric cardiology who was furious with the resident. (This chief of cardiology later started a clinic for children with Down Syndrome to meet their special health needs.)

Although we lost Karen when she was just 5 ½ months old, I still treasure my time with her and because of her, I became an advocate and volunteer for people with disabilities.
I wish I could say that my story is unique but I have seen many similar situations over the last three decades involving people of all ages with disabilities.

Therefore, I beg you to approve Simon’s Law. It will potentially save lives as well as send a strong message that medical discrimination against the disabled based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.

Sincerely,

Nancy Valko, RN ALNC