Protecting Premature Babies and Abortion Survivors

On September 25, 2020, President Donald Trump signed an Executive Order on Protecting Vulnerable Newborn and Infant Children” that states:

“Every infant born alive, no matter the circumstances of his or her birth, has the same dignity and the same rights as every other individual and is entitled to the same protections under Federal law. “

This executive order came after Speaker NancyPelosi and House Democrats refused to allow a vote on the “Born Alive Abortion Survivors Protection Act” over 80 times.

ELLIOT AND EMERY

The new executive order protects not only babies who survive abortions but also those babies born prematurely like twins Emery and Elliot who were denied medical treatment after being born at 22 weeks and 5 days, despite a doctor’s prior assurances and despite the parents’ desperate pleas for treatment after the boys were born.

In an interview, the twins’ mother Amanda told me that the doctors predicted the babies would be stillborn or die shortly after birth because of their prematurity. However, the doctors were wrong: one of the boys lived for 45 minutes and the other for 2.5 hours.

Amanda and Shaun Finnefrock, the twins’ parents, have been active ever since their boys’ deaths in 2017 , advocating for “equal protection, equal treatment, the equal opportunity for survival — whether they survived an abortion or their mothers wanted them to live, like I did mine.”

They have been working on an Elliot and Emery’s Law for their home state of Ohio to protect other prematurely born babies.

Unfortunately, a 2015 University of Iowa study found that infants born at 22 weeks received potential lifesaving treatment at fewer than one in four hospitals. Almost all hospitals, the researchers found, will treat infants born at 25 weeks, but there is substantial variation among hospitals on whether they actively treat infants born at 23 or 24 weeks.

One obstacle is the fear that premature babies will be at an increased risk of disability as a result of the prematurity. But it is impossible to know at birth if the newborn will have disabilities because of prematurity. 

The good news is that studies are now finding that the majority of premature babies born at 22 weeks survive if given care.

CONCLUSION

When I started my nursing career over 50 years ago, babies more than 3 months premature routinely died because of breathing problems. But when ventilators and especially surfactant to protect the babies’ lungs were developed, “preemies” started to be saved at earlier and earlier stages with good results.

But most importantly, this progress was made because of the willingness of both parents and doctors to try to save these babies that made all the difference.

The World Brain Death Project: What It Means

THE HISTORY OF BRAIN DEATH

In December of 1967, the first successful heart transplant was performed in South Africa by Dr. Christian Barnard. At that time, there were no guidelines for the diagnosis of death for beating heart donors.

In September of 1968, the Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death was published with the purpose of defining irreversible coma as a new criterion for death.

This was done for two stated  reasons:

  1. “Improvements in resuscitative and supportive measures have led to increase efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual  whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals and on those in need of hospital beds already occupied by these comatose patients.
  2. “Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” (All emphasis added)

This report was quickly accepted by many and in 1968, the Uniform Anatomical Gift Act was passed in the US  as a regulatory framework for the donation of organs, tissues and other human body parts. The Act allowed the donation of whole or part of a human body to take effect upon or after the death of the donor.

The Uniform Declaration of Death Act (UDDA) was drafted in 1981 by a President’s Commission study to brain death and approved by both the American Medical Association (AMA) and the American Bar Association (ABA). It was intended to provide a model for states to emulate.

It offered 2 definitions of when a person could be declared legally dead to align the legal definition of death with the criteria largely accepted by the medical community:

  1. “Irreversible cessation of circulatory and respiratory functions (the traditional definition of death); or
  2. Irreversible cessation of all functions of the entire brain, including the brain stem (brain death)” (Emphasis added)

The UDDA in some form has since been adopted by all US states and the District of Columbia.

However, in the June 2020 issue of the American Journal of Bioethics,  the well-known lawyer/ethicist Thaddeus  Mason Pope wrote about a current effort “to revise the Uniform Determination of Death Act (UDDA) to assure a consistent nationwide approach to consent for brain death testing.” (Emphasis added)

Why just consent to brain death testing?

According to Mr. Pope:

“Right now, a patient might be legally dead in Nevada, New York, or Virginia (where consent is not required). But that same patient might not be legally dead in California, Kansas, or Montana (where consent is required and might be refused). (Emphasis added)”

Instead, Mr. Pope proposes adding this to the Uniform Determination of Death Act (UDDA):

“Reasonable efforts should be made to notify a patient’s legally authorized decision-maker before performing a determination of death by neurologic criteria, but consent is not required to initiate such an evaluation”. (Emphasis added)

Mr. Pope states that typically, the Uniform Law Commission (ULC) follows a four-step process to change a law but notes that the Healthcare Law Committee has already skipped the first three steps and is ready for drafting the new language in the fourth step.

Ironically, there was a case last year in Michigan where the parents of a teenager  pushed for a Bobby’s Law after their son was taken off life support after being declared brain dead despite their objections. The law would “require a minor’s parents to consent to withhold or withdraw life-sustaining treatment or to give do-not-resuscitate orders before medical professionals could end life support for a juvenile” and also allow the parents to defer an apnea test (taking the person off a ventilator to see if the person is able to breathe on his or her own) required to determine brain death. (Emphasis added)

THE WORLD BRAIN DEATH PROJECT

In an August 3, 2020 article in the Journal of the American Medical Association (JAMA) titled “Determination of Brain Death/Death by Neurologic Criteria- The World Brain Death Project” , the authors state that due to “inconsistencies in concept, criteria, practice, and documentation of brain death/death by neurologic criteria (BD/DNC) both internationally and within countries”, there is a need to “formulate a consensus statement of recommendations on determination of BD/DNC”. (Emphasis added)

In a August 3, 2020 Medpage article “Brain Death: What Does It Mean?” on the World Brain Death Project, the writer notes that the “guidelines recommend that consent not be required for apnea testing because of concerns over prolonged somatic support” while quoting a doctor who disagreed:

“Ostensibly, families should be asked to provide consent because the apnea test may lead to cardiovascular collapse in some patients, classifying it as procedure with risk,” (All emphasis added)

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the new innovation of brain death organ transplantation. We trusted the experts and the prevailing medical ethic of the utmost respect for every human life.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for up to 10 minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told that greater minds than mine had it all figured out so I shouldn’t worry.

It was years before I realized that these doctors did not have the answers themselves and that my questions were valid.

I discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were cases of “brain dead” people like Jahi McMath living for  years after a diagnosis of brain death or even recovering like Zack Dunlap

If the legal definition of brain death is truly “irreversible cessation of all functions of the entire brain, including the brain stem”, these cases would seem to be impossible.

CONCLUSION

The World Brain Death Project is riddled with potential problems in establishing a worldwide consensus on brain death criteria and testing using a “set of criteria that satisfies the lowest acceptable standard for practice”. (Emphasis added) And changing the US Uniform Determination of Death Act to supersede states requiring consent before brain death testing will not inspire trust in the healthcare system or the law.

Personally, I will not sign an organ donor card or allow my organs to be taken by donation after cardiac death (DCD), a new category of severely brain-injured people who are not brain dead but who are on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”. The ventilator is removed and the patient’s heart is expected to stop. (However, a 2016 study showed that 27% of potential donors did not die within the window specified for organ recovery.)

Instead, my family knows that I am willing to donate tissues like corneas, skin, bones, etc. that can be ethically donated after natural death.

It is vitally important that everyone understands all the facts before signing an organ donor card.

And we all should demand transparency and rigorous medical ethics from our healthcare system.

 

 

 

Strongest “Simon’s Law” Yet is Passed in Iowa

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 signed by Governor Mike Parson last year.

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.”

I testified on Simon’s Law myself because when my own daughter Karen was born in 1982 with Down Syndrome and a heart defect, I was tipped off that my pediatrician had secretly given Karen a Do Not Resuscitate order against my expressed wishes because she felt I “was too emotionally involved with that retarded baby”. I protested and the order was withdrawn.

During the fight for Missouri’s Simon’s Law, other states passed similar laws. Some require only that parents be informed that doctors plan to write a DNR order for a child while others prohibit writing the order over parental objections. Hospital ethics committees are usually involved, especially when such cases go to court. And some states like Texas have problematic laws that give objecting parents 10 days to find a new healthcare facility if they disagree with doctors and ethics committees who decide to take a child off life-sustaining treatment.

However, the strongest type of “Simon’s Law” yet was just signed into law in Iowa on June 29, 2020 by Governor Kim Reynolds.

The law states that:

A court of law or equity shall not have the authority to require the withdrawal of life-sustaining procedures from a minor child over the objection of the minor child’s parent or guardian, unless there is conclusive medical evidence that the minor child has died and any electronic brain, heart, or respiratory monitoring activity exhibited to the contrary is a false artifact.” (Emphasis added)

This is stunning, especially since it requires conclusive medical evidence that the child has died using the most stringent criteria of no brain, heart or respiratory activity. (As one legislator explained in a video, the “false artifact” provision would prevent a “crooked parent” from keeping the child on life support indefinitely in a felony murder situation.)

In recent years, we have seen court cases like the teenager Jahi McMath who lived for years and even seemed to improve after a diagnosis of brain death and now the case of Baby Tinslee with heart and lung problems whose doctors want to remove her ventilator against the parents’ wishes.

At the very least, this new Iowa law illustrates the necessity of better legal protections for both medically vulnerable children and their parents.


 

Health Care Rationing, Covid 19 and the Medical Ethics Response

While the key medical model in the US for Covid 19 deaths has just again been revised from 240,000 to 100,000 to now just 60,000 by August along with concerns about the possible overuse of ventilators in Covid 19, there is still a push for medical health care rationing guidelines.

As the April 8, 2020 Wall Street Journal article As Coronavirus Peaks, New York City’s Hospitals Prepare ‘Live or Die’ Guidance” notes, some hospitals and health care systems are coming up with guidelines and scoring systems to allocate ventilators. At the same time, New York lawmakers have recently passed a measure to protect hospitals and clinicians from certain medical malpractice lawsuits while the Covid 19 virus strains the health system.

Disability groups are complaining about discrimination in health care rationing plans that would “illegally deprive people based on age, mental cognition or disability”. In addition, a recent Center for Public Integrity analysis shows that policies in 25 states would ration care in ways disability advocates have denounced.

While such rationing plans are usually said to be based on determining which patients have little if any chance of a good outcome, i.e.  medical futility, even the American Medical Association has admitted in its Code of Ethics that “However, physicians must remember that it is not possible to offer a single, universal definition of futility. The meaning of the term “futile” depends on the values and goals of a particular patient in specific clinical circumstances.” (Emphasis added)

THE CATHOLIC MEDICAL ETHICS PERSPECTIVE

Medical ethics in Catholic health care institutions are often considered the most stringent in terms of protecting human life from conception to natural death. So what do Catholic ethics authorities say about rationing?

On April 3, 2020, the US Catholic Conference of Bishops (USCCB) issued a powerful statement “Bishop Chairmen Issue Statement on Rationing Protocols by Health Care Professionals in Response to Covid-19” that stated:

“Every crisis produces fear, and the COVID-19 pandemic is no exception. However, this is not a time to sideline our ethical and moral principles. It is a time to uphold them ever more strongly, for they will critically assist us in steering through these trying times.”

and

“Good and just stewardship of resources cannot include ignoring those on the periphery of society, but must serve the common good of all, without categorically excluding people based on ability, financial resources, age, immigration status, or race.” (Emphasis added)

The statement cited other Catholic health care groups like Catholic Medical Association, the National Association of Catholic Nurses and the National Catholic Bioethics Center that all issued helpful statements.

However another Catholic group mentioned, the Catholic Health Association, has also issued a problematic statement on the rationing issue titled “Code Status and COVID-19 Patients “ stating that:

“CPR may be medically inappropriate in a significant portion of elderly, critically ill patients with COVID-19 and underlying comorbidities. As per Parts 3 and 5 of the Ethical and Religious Directives for Catholic Health Care Services, if it is shown that the burdens exceed the benefits, it is morally acceptable to withhold such procedure.” (Emphasis added)

And even worse:

“If treating clinicians, including more than one physician, determine that CPR is not medically appropriate, a Do Not Attempt Resuscitation Order (DNR) may be written without explicit patient or family consent.” (All emphasis added)

In a separate April 7, 2020 statement from the  National Catholic Partnership on Disability titled “Rights of Persons with Disabilities to Medical Treatment During the COVID-19 Pandemic , the NCPD states “As The Office of Civil Rights of the U.S. Department of Health and Human Services has recently reminded us, America’s basic civil rights laws, including the Americans with Disabilities Act, prohibit discrimination:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. ”  (Emphasis added)

CONCLUSION

Over my many decades as a nurse, I have seen the question of “quality of life” deteriorate from what can we do to improve the quality of life for every patient to judging whether or not a patient has sufficient quality of life to justify treatment or care like a feeding tube.

During that time, Alzheimer’s and major CVAs (strokes) in advanced age have come to be seen as fates worse than death that should not be a burden on people and their families or a waste of health care resources.

Before my own mother developed Alzheimer’s and a terminal cancer, she often told me that she never wanted to be a “burden to her family”. I never considered her a “burden” when I cared for her and she was comfortable and fed to her last day. I will never tell my children what my mother told me.

And especially with assisted suicide polls showing much public support, we cannot afford to play into the idea that some people are “better off dead” regardless of whether or not they “choose” a premature death or someone else “chooses” it for them.

We should also remember the lethal legacy of the 2005 Hurricane Katrina disaster. Flooding caused the New Orleans mayor to issue an unprecedented mandatory evacuation of the city with the exception of major hospitals. But when conditions worsened at the large Memorial Medical Center and evacuation efforts were slow, some medical staff allegedly euthanized some of the patients.

However and despite strong evidence, a massive PR campaign portraying those patient deaths as “compassionate” resulted in the 2007 grand jury refusing to indict the doctor and 2 nurses charged.

As we see this debate over medical ethics in crisis situations continue today, we must continue to insist that every person deserves a natural lifespan without discrimination.

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.

 

 

 

 

 

 

 

 

Can Getting a DNR Tattoo be Hazardous to Your Health?

Cardiopulmonary resuscitation (CPR) is a lifesaving technique developed in the 1960s  for emergencies such as a heart attack or near drowning when a person’s breathing or heartbeat has stopped. Even non-medical people can be trained in basic CPR. However, not every person can be saved with CPR and some who do survive can have some brain damage.

In the early 1970s when I was a young ICU nurse, patients who appeared to be dying or their families could agree to a “do not resuscitate” (DNR) order.

But the 1991 Patient Self-Determination Act, along with the so-called “right to die” cases like Nancy Cruzan and Karen Quinlan, resulted in  the widespread use of DNR orders in hospitals.

So now after years of concern with rising health care costs, older people worried about becoming a “burden” to their adult children, and the push for people to sign “living wills” to refuse certain treatments if they become incapacitated,  it should not be a surprise that a growing number of people-including young, healthy people-are getting DNR (do not resuscitate) tattoos.

But what does that mean when an unconscious person is rushed to an emergency room?

Recently, there was a serious discussion of an actual case and a poll on ethics and DNR tattoos in MedPage, a newsletter for health care professionals.

The case involved a patient who arrived in an emergency room and unconscious after suffering a heart attack while jet skiing on vacation. He had ‘Do Not Resuscitate’ tattoo on his chest. There was a signature under the tattoo. However, the ambulance crew called restarted his heart with a defibrillator. The man was stabilized but hours later he has another heart attack.

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

I was appalled that 43% would treat a DNR tattoo as the equivalent of a legal document and I agree with the reasoning of the lawyer/doctor reviewing this case who wrote that “the legally correct course of action would be to temporarily ignore the tattoo unless and until evidence that the tattoo reflects the patient’s current thinking is brought forth.”

PROBLEMS WITH DNR ORDERS

Unfortunately in hospital situations, DNR orders are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances.

For example, a new nurse was taking care of a young girl with mental retardation who was eating when she suddenly started choking. The new nurse ran to her head nurse in a panic and was told that, because the parents agreed to a DNR order, the nurses could only just hold her hand!

Obviously, relieving the choking by removing the food should have been done.

CONCLUSION

The results of not understanding  DNR orders can be tragic but too many people-including medical professionals-don’t realize the legal and ethical ramifications.

Personally, I chose to make a durable power of attorney for health care naming my husband as the decision maker if I could not speak for myself rather than a “living will” or other advance directive with various treatments to check off if I can’t speak for myself.

I want all the options, risks and benefits of treatments fully explained to my decision maker based on my current condition so that he make an informed decision. This would include the use of a DNR if or when I am dying.

What we all desperately need now is more awareness and common sense when it comes to asking for or allowing a “Do Not Resuscitate” order, especially a DNR tattoo.

 

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.

What about Ventilators and “Pulling the Plug”?

When I first became a registered nurse in 1969, ICUs (intensive care units) were still new. The first one I worked was set up in the former visitors’ lounge and we learned how to read EKGs (heart tracings) by using a book.

By the early 1970s, I worked in a surgical/trauma ICU where we used sophisticated ventilators like the MA-1. We were able to get almost all our patients off ventilators by weaning, the process of gradually lowering ventilator support until the patient can breathe on his or her own.

But in 1976, I was shocked by the Karen Quinlan case that changed everything.

Karen was a 21 year old woman who suffered brain damage after apparently taking drugs at a party. She was hospitalized and placed on a ventilator. When she was thought to be in a “persistent vegetative state”, her adoptive parents asked that her ventilator be removed. The doctors disagreed and they case eventually went to the New Jersey Supreme court that allowed the removal of the ventilator on the grounds of an individual’s right to privacy.  Shortly afterward, California passed the first “living will” to refuse “life support” if or when the signer is incapacitated.

Ironically, Karen lived 10 more years because, as some ethicists criticized, she was weaned off the ventilator instead of just abruptly stopping the ventilator.

My experience with ventilators became personal in 1983 when my baby daughter Karen died on a ventilator before she could get open-heart surgery. Unfortunately, one young doctor earlier offered to take her off the ventilator to “get this over with”. I reported him to the chief of cardiology who was furious with the young doctor.

In the 1990s, I returned to working in an ICU and was shocked by the development of the “terminal wean” for some patients on ventilators. Often the families were told that there was no hope of a “meaningful” life. The terminal wean involved abruptly disconnecting the ventilator and “allowing” the patient to die. I brought up at least trying regular, gradual weaning and oxygen as we did for the other patients on ventilators but I was ignored.

After I retired from bedside nursing, I was asked to be with an elderly man on a ventilator who had had a massive stroke and the family was told that he would never have any quality of life and would die soon anyway. I tried to bring up weaning but some members of the family were adamant.

When the ventilator was stopped. I held the man’s hand and prayed while he gasped for air and turned blue. I asked the nurse to at least giving him oxygen for comfort but she ignored me. Instead, she gave frequent doses of morphine intravenously until the man’s heart finally stopped after 20 minutes.

I am still haunted by this man’s death.

INFORMED CONSENT?

The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention…”.

But most people seem to have a vague understanding of ventilators when they sign a “living will” or other advance directives and thus have very little information about this often life-saving medical intervention.

As a nurse, I found that most people-especially the elderly-tend to automatically check off ventilators without understanding that a sudden problem with breathing can come from a number of treatable conditions that don’t require long-term use of a ventilator such as  asthma, drug overdoses, pneumonia and some brain injuries.

In some circumstances such as certain spinal cord injuries and late-stage neurodegenerative diseases like amyotrophic lateral sclerosis, the ventilator is  necessary long-term to live. But even then, people like Christopher Reeve and Stephen Hawking have used portable ventilators to continue with their lives. Some people with disabilities use small ventilators only at night.

It is important to know that ventilators move air in and out of the lungs but do not cause respiration-the exchange of oxygen and carbon dioxide that occurs in lungs and body tissues. Respiration can occur only when the body’s respiratory and circulatory systems are otherwise intact. A ventilator cannot keep a corpse alive.

It’s also important to know that not all machines that assist breathing require the insertion of a tube into the windpipe. Non-invasive positive-pressure ventilation like the BiPap successfully used for my elderly friend Melissa allowed her to use a face mask to assist her breathing until antibiotics cured her pneumonia.

WEANING FROM A VENTILATOR

Many patients are easy to wean from a ventilator but some patients are more difficult.

Years ago, I cared for an elderly woman with Alzheimer’s who needed a ventilator when she developed pneumonia. She had made her son and daughter her medical decision makers in her advance directive.

However, the doctors found it very difficult to try to wean the ventilator after the woman improved. They spoke to the family about removing the ventilator and letting her die. The daughter agreed but the son was adamantly against this.

The woman was totally awake after the sedation to keep her comfortable on the ventilator was stopped. She was cooperative and made no effort to pull out the tube in her windpipe. She just smiled when asked if she wanted the ventilator stopped.

Having known of some great respiratory therapists in the past who were able to successfully wean difficult patients from ventilators, I suggested that she be transferred. She was transferred and a week later we were told that she was successfully weaned from her ventilator.

About a year later, I encountered the woman again when she was recuperating after a routine surgery. Although her Alzheimer’s disease was unchanged, she was doing well in an assisted living residence.

CONCLUSION

As a student nurse, I was as initially intimidated by ventilators as anyone else. But as I learned how to use them and saw the constant improvements not only in the technology but also in our care of patients on ventilators, I came to see ventilators as a great blessing when needed.

And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine-especially in a crisis situation. Most of my patients on ventilators recovered but some could not be saved. We were surprised and humbled when some patients with a poor prognosis recovered while others who seemed to have a better chance died unexpectedly. There are no guarantees in life or death.

That is why my husband and I wrote our advance directives that designate each other as our decision maker with the right to have all current options, risk and benefits of treatment fully explained.

We don’t want an advance directive that could be hazardous to our health!

 

A Legacy for Jahi McMath

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

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

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

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

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

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

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

A SURPRISING DEVELOPMENT

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

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

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

And also that Jahi:

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

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

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

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

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

CONCLUSION

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

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

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

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

Now that would be a great legacy for Jahi McMath!