ventilators/life support

Baby Tinslee Lewis Finally Goes Home after Beating the Texas 10 Day Rule

nancyvalko futility, law, medical ethics, pro-life, Simon's Law, ventilators/life support

In 2019, Baby Tinslee Lewis was born prematurely with a rare heart condition called Ebstein’s anomaly and underdeveloped lungs at Cook Children’s Medical Center in Texas. She needed life support, including a ventilator to help her breathe.

The medical team began talking to her family soon after her birth about possible end-of-life care. Eventually, the medical team met with the hospital’s ethics committee and the committee agreed that it would be inappropriate to continue to treat Tinslee.

As HALO (Healthcare Advocacy and Leadership Organization) explains, this met the Texas 10-day rule for removing Tinslee’s life-sustaining treatment:

TEXAS 10-DAY RULE
  The 10-Day Rule is a part of the Texas Advance Directives Act (§166.046). Basically, this “rule” allows a hospital ethics committee to decide to remove life-sustaining treatment from a patient against the patient’s or family’s wishes. The patient or patient’s decision maker (usually family)    most likely, not professionals and are generally ill-equipped to defend their position. The committee follows with a written notice of its decision that life-sustaining treatment is “inappropriate.” Receipt of this notice marks the start of a ten-day countdown. “The physician and the health care facility,” states the law, “are not obligated to provide life-sustaining treatment after the 10th day after the written decision.” Finding another facility that will honor the patient’s/family’s treatment wishes and transferring the patient—at the expense of the patient and/or family—are monumental tasks which often prove impossible within the ten-day window.

The family was told they had until Nov. 22 to find a new hospital willing to take Baby Tinslee.

However, Tinslee’s family fought for her and they won a last-minute reprieve from a judge to stop the Texas hospital from taking the now 9 month old off life support against their wishes.

The hospital spokesperson stood by the hospital’s decision to end life support, saying:

“In the last several months, it’s become apparent her health will never improve,” and

“Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated.” and

“Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.

In July 2020, the hospital again wanted to take Tinslee off life support while Tinslee’s mother asked for another specialist to see her. The specialist recommended a tracheostomy to help her.

With help from individuals, lawyers and groups like Texas Right to Life and HALO (Healthcare Advocacy and Leadership Organization), Tinslee’s case was eventually taken all the way up to the Texas Supreme Court. Finally, this court ruled to keep Tinslee on life support. The US Supreme Court upheld the Texas court‘s decision.

Now, Tinslee has so steadily improved (see the pictures) that the hospital released her to go home to her family. She is now on a portable ventilator with a tracheostomy and home health care.

Texas Right to Life states:

“Tinslee’s success story shows that in the absence of an anti-Life countdown, families and hospitals can work together for the benefit of the patient. Tinslee has received excellent care from Cook Children’s Medical Center. It is with their efforts that Tinslee will now transition to home health care. Meanwhile, Texas Right to Life is committed to doubling our efforts in the Capitol and with our full-time patient advocacy team to combat and stop the deadly 10-Day Rule from destroying the lives of more vulnerable patients like Tinslee. “

CONCLUSION  

I have been writing about medical futility problems for decades, especially about Simon’s Law to protect medically vulnerable children and their parents from medical discrimination, including my own daughter.

We need to send a strong message that medical discrimination against medically vulnerable or disabled people of any age based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.

Protecting Premature Babies and Abortion Survivors

nancyvalko abortion, futility, law, medical ethics, ventilators/life support

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

nancyvalko brain death, end-of-life, futility, law, medical ethics, organ donation, ventilators/life support

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

nancyvalko brain death, brain injury, futility, medical ethics, ventilators/life support

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.

Covid 19 and the Culture of Death

nancyvalko advance directives, Compassion & Choices, Covid 19, medical ethics, terninal/palliative sedation, ventilators/life support

“Ironically, the Covid 19 pandemic has pulled back the curtain on how far our healthcare ethics has fallen from the ideal of  respecting every life to the dangerous notion that some lives are expendable-even our own.”

I have written about how the Covid 19 pandemic has resulted in dangerous and unethical responses like ventilator rationing,  unilateral DNRs, and some states ordering nursing homes and other long-term care facilities to accept coronavirus patients discharged from hospitals.

But now,  the Covid 19 crisis has also spawned new ideas such as the American Clinicians Academy On Medical Aid in Dying’s policy recommendations on medically assisted suicide requests by telemedicine in the context of Covid 19  and Covid 19 advance directives aimed at refusing potentially life-saving treatment.

Compassion and Choices, the former Hemlock Society that promotes assisted suicide, voluntary stopping of eating and drinking (VSED) and terminal sedation, now has a Covid 19 toolkit with a special Covid 19 addendum  to add to an existing advance directive to refuse care if a person gets Covid 19. The addendum even contains the question:

“Do you want your healthcare proxy to have the ability to override any of these orders if he or she believes you have a reasonable chance of living a life consistent with your values and priorities based on the information provided by the doctor? Or, do you want these orders followed no matter what?” (Emphasis added)

Another organization “Save Other Souls”, headed by an MD and an ethicist, has an “altruistic” advance directive for Covid 19 that states:

“In the event of shortages during the period of a declared emergency related to COVID-19, and in order to direct resources to others, I am willing to receive palliative care instead of: Critical medical equipment (ventilator, ECMO, etc.), Medication (other than palliative), Placement in a hospital care unit that provides critical care.” (Emphasis added)

Even more disturbing, the National Hospice and Palliative Care Organization (NHPCO) has a new resource for Crisis Standards of Care for the “ethical allocation of scarce medical resources during a disaster” that:

“provides a framework for healthcare professionals to utilize a predetermined framework to determine which individuals will receive life saving care during an emergency event or disaster and which ones will not. With the event of the COVID-19 Public Health Emergency (PHE), it is important for palliative and hospice care providers to be familiar with Crisis Standards of Care.” (Emphasis added)

The National Hospice and Palliative Care Organization (NHPCO), founded in 1978, is the nation’s largest membership organization for providers and professionals who care for people affected by serious and life-limiting illness”. NHPCO states that it “represents the interests of its members and the general public with legislative advocacy that helps to enhance and expand access to care that addresses holistic health and the well-being of communities.” (Emphasis added)

Not surprisingly, the NHPCO has supported  the problematic Palliative Care and Hospice Education and Training Act, currently still in the US Congress awaiting passage.

CONCLUSION

The Covid 19 pandemic is especially terrifying to many people but we must realize that just like any other serious or terminal illness, we must act responsibly and ethically in caring for people with Covid 19.

While medical treatment that is medically futile or unduly burdensome to the person can be ethically refused or withdrawn, refusing or removing ordinary medical treatment or deliberately oversedating a person in order to cause or hasten death is unethical. Even when we think it may help another person get care.

We need to know the difference, especially when it comes to making out “living wills” or other advance directives.

Ironically, the Covid 19 pandemic has pulled back the curtain on how far our healthcare ethics has fallen from the ideal of  respecting every life to the dangerous notion that some lives are expendable-including our own.

 

 

Health Care Rationing, Covid 19 and the Medical Ethics Response

nancyvalko CHA, Covid 19, disability, euthanasia, futility, law, medical ethics, ventilators/life support

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.

Ventilator Rationing, Universal DNRs and Covid 19 (Coronavirus)

nancyvalko conscience rights, Covid 19, disability, Living wills, medical ethics, nursing, pro-life, ventilators/life support

As a nurse myself, it is hard to watch my fellow nurses bravely fighting on the front lines of this pandemic without being able to be there with them.

Nurses are a special breed. In my over 50 years as a nurse, I found that most of us chose nursing because we want to help people and alleviate suffering. We work the long hours on our feet, skip meals, hold hands and listen, cry when our patients die, etc. because we truly do care.

But the health care system has been changing. A dark new ethics movement is infecting our system and telling us not only that our patients have a right to choose to end their lives but also that some of our patients even “need” to die and that we can’t care for all of them during the Covid 19 pandemic.

Worst of all, we are being told that we can now know how to decide which patients are “expendable”.

VENTILATOR RATIONING

A 71 year old man with a heart condition arrives at a hospital is diagnosed with Covid 19. His condition worsens and he is placed on a ventilator to help him breathe. Then the infection rate spikes in the city and the hospital is overrun with severely ill patients, many between 20 and 50 years old and otherwise healthy.

The health care team is forced to decide which patients should they focus on and care for.

This is the scenario posed in a March 20, 2020 Medpage article “Ethics Consult: Take Elderly COVID-19 Patient Off Ventilator?— You make the call” along with an online survey with 3 questions:

1. Would you prioritize the care of healthier and younger patients and shift the ventilator from the elderly man to patients with a higher probability of recovering?
2. Would you change your decision if the elderly patient had been in intensive care for a non-COVID-19-related illness?
3. Would you prioritize the older man over college students who had likely been
infected during spring break trips?

After almost 4000 votes, the survey showed 55.65% voting yes on prioritizing the care of the healthier and younger patients, 78.11% voting no on changing their decision about the elderly patient if he didn’t have Covid 19 and 71.12% voting no on prioritizing the elderly man over college students likely to have been infected on a spring break trip.

So while most people fear becoming infected with Covid 19, less well-known ethical dangers may also affect us-especially those of us who are older or debilitated.

Every day, we hear about the shortage of ventilators needed for Covid 19 patients and the overworked and understaffed health care professionals providing the care. Now both mainstream media and medical journals are publishing articles about the ethical dilemma of denying CPR (cardiopulmonary resuscitation) or a ventilator to older patients or those with a poor prognosis with Covid 19 in a triage situation.

Triage is defined as “A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated.” (Emphasis added)

But this definition does NOT include deciding how to triage people based on age or “productivity”.

UNIVERSAL DNRs

A March 25, 2020 Washington Post article “A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic” posed the question: “how to weigh the ‘save at all costs’ approach to resuscitating a dying patient against the real danger of exposing doctors and nurses to the contagion of coronavirus.”

This is not just an academic discussion.

As the article reveals, “Northwestern Memorial Hospital in Chicago has been discussing a do-not-resuscitate policy for infected patients, regardless of the wishes of the patient or their family members — a wrenching decision to prioritize the lives of the many over the one.” (Emphasis added) And Lewis Kaplan, president of the Society of Critical Care Medicine and a University of Pennsylvania surgeon, described how colleagues at different institutions are sharing draft policies to address their changed reality.

Bioethicist Scott Halpern at the University of Pennsylvania is cited as the author of one widely circulated model guideline being considered by many hospitals. In an interview, he said a universal DNR for Covid 19 patients was too “draconian” and could sacrifice a young person in otherwise good health. He also noted that the reality of health-care workers with limited protective equipment cannot be ignored. “If we risk their well-being in service of one patient, we detract from the care of future patients, which is unfair,” he said.

The article notes that “Halpern’s document calls for two physicians, the one directly taking care of a patient and one who is not, to sign off on do-not-resuscitate orders. They must document the reason for the decision, and the family must be informed but does not have to agree.” (Emphasis added)

This could not only upend traditional ethics but also the law as “Health-care providers are bound by oath — and in some states, by law — to do everything they can within the bounds of modern technology to save a patient’s life, absent an order, such as a DNR, to do otherwise.”

Both disability and pro-life groups have condemned such health care rationing with Covid 19, especially for older people and people with disabilities.

However, this and more is apparently already happening.

In an April 1, 2020 Wall Street Journal article “What the Nurses See: Bronx Hospital Reels as Coronavirus Swamps New York” a co-worker told the nurse interviewed that the nurses were no longer doing chest compressions to resuscitate Covid 19 patients because “it uses lots of protective gear and puts workers at greater risk than chemical resuscitations”. This was corroborated by other nurses who said this has become an “unspoken rule.”

CONCLUSION

How can we protect ourselves and our loved ones in these circumstances?

At the very least and whether or not we are older or have disabilities, we should consider or reconsider our advance directives.

As the Life Legal Defence Foundation  writes in their “SPECIAL MESSAGE ABOUT COVID-19 AND ADVANCE HEALTH CARE DIRECTIVES”:

As COVID-19 spreads around the globe, the public is learning about the importance of mechanical ventilators in providing temporary breathing support for many of those infected. Ventilators are saving lives!

A false understanding of respirators and ventilators has become commonplace in recent years. Many people think that these and similar machines’ only role is prolonging the dying process. The widely publicized treatment of COVID-19 patients is helping to dispel that myth. Many patients rely on machines temporarily every day for any number of reasons and go on to make full recoveries.

Unfortunately, many individuals have completed advance health care directives stating or suggesting that they do not wish to receive breathing assistance through mechanical ventilation.

Please take the time to review any advanced medical directives (including POLST forms) signed by you or your loved ones to make sure they are clear that mechanical ventilation is not among the forms of care that are refused. If there is any ambiguity, you may want to consider writing, signing, and dating an addendum specifying that mechanical ventilation is authorized. (Emphasis in original)

I would add that other treatments or care such as DNRs and feeding tubes also not be automatically checked off. I believe it is safer to appoint a trusted person to insist on being given all information concerning risks and benefit before permission is given to withdraw or withhold treatment.

Even as the nation is racing to get more ventilators and staff as we cope with this terrible pandemic, we all must continue to affirm the value of EVERY human life.

 

A Very Special 6th Birthday Party

nancyvalko brain injury, disability, family, ventilators/life support

Recently, I was invited to a 6th birthday for a special boy.

“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.

John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.

John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.

I was called about John to help with information and support.

At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.

However, John surprised us all by getting better and going home. He was tough!

It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.

When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.

John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.

CONCLUSION

When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.

But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.

I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.

I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.

Too often, people assume that a child with special needs is automatically a family tragedy.

The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.

And, of course, faith.

 

 

What about Ventilators and “Pulling the Plug”?

nancyvalko Alzheimer's, education, end-of-life, futility, medical ethics, ventilators/life support

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!

 

Roe v. Wade’s Disastrous Impact on Medical Ethics

nancyvalko abortion, Alzheimer's, assisted suicide, Compassion & Choices, law, medical ethics, nursing, ventilators/life support

This was published in the National Right to Life News January 2019 issue “The Consequences of Roe v Wade” on page 8.

Most people volunteer for the pro-life movement. I consider myself a draftee. For me, there was no “choice.” I became a conscript because of personal and professional experiences that followed in the wake of the Roe v Wade decision.

I was a young intensive care unit nurse when the Roe v. Wade decision came down in 1973. Like most people I knew, I was shocked when abortion was legalized. As a medical professional, I couldn’t imagine good doctors and nurses condoning — much less participating in — such a brutal act.

However, I quickly found that my medical colleagues were split on the issue. In a foreshadowing of what was to come, those supporting what was then said to be “only” early abortions were the most vocal and insistent.. Our formerly cohesive unit began to fray.

However, I was professionally offended by the pro-life argument that legalizing abortion would lead to the legalization of infanticide and euthanasia. It was one thing to deny the truth with an early and unobserved unborn baby but it was quite another to imagine any doctor or nurse looking a born human being in the eye and killing him or her.

How wrong I was!

INFANTICIDE AND MEDICAL DISCRIMINATION AGAINST PEOPLE WITH DISABILITIES

My eyes were opened with the 1982 Baby Doe case in Indiana. Baby Doe was a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe). He was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. He also was not fed. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court.

When we read the story, my husband and I wanted to adopt Baby Doe. But all offers of adoption were refused.

When our daughter Karen was born a few months after Baby Doe, we were stunned that she had both Down Syndrome and a severe heart defect but I was determined that she would not become another Baby Doe.

The cardiologist told us that Karen had an 80-90% chance of survival with one open-heart surgery by age 6 months. He also gave us a “choice”- to let Karen die. I was outraged that he could even consider not treating my daughter like any other baby with the same heart defect.

Even worse, when my daughter was hospitalized with pneumonia at 4 months, I was tipped off that my trusted pediatrician had made her a “do not resuscitate” without my knowledge or consent because “Nancy is too emotionally involved with that retarded baby”. I then realized that “choice” was just an empty slogan that had infected medical ethics.

Although Karen survived that incident, she unfortunately died at age 5 1/2 months just before her scheduled surgery.

At last I finally joined the disability rights and the pro-life movements.

THE “RIGHT TO DIE” MOVEMENT

A few years after Karen, I was shocked by the so-called “right to die” movement that pushed “living wills” to refuse even food and water by tube if or when a person became incapacitated. I became involved in both the Nancy Cruzan and Terri Schiavo cases.

Both involved seriously brain-injured, non-dying young women declared “vegetative”, a dehumanizing term invented in 1972. I wrote an op-ed for my local paper predicting that the potential pool of victims would expand if death by starvation and dehydration was allowed.

I was thinking about my own mother who had Alzheimer’s and cancer and indeed I was asked at one point if our family was going to feed her. I replied that my mother would die naturally from her condition, not starvation and dehydration.

How far we have descended! Now,  prominent doctors and the American Nurses Association are promoting what Compassion and Choices calls voluntary stopping of eating and drinking by mouth (VSED) as a legal option to  “speed up dying” for competent people with serious illnesses. “Living wills” to prevent even spoon feeding for people with dementia are also being developed.

PHYSICIAN-ASSISTED SUICIDE

The “right to die” movement ultimately did expand into the Compassion and Choices organization, the well-funded former Hemlock Society that promotes physician-assisted suicide by lethal overdose. In the late 1990s, Oregon became the first state to legalize assisted suicide. Now a handful of states and the District of Columbia have followed Oregon but the relentless effort to legalize physician-assisted suicide continues in the other US states.

Over the years, I had cared for many suicidal people and I saw the seductive effect of people like Jack Kevorkian, the infamous “Dr. Death” on them. As a nurse, I knew how dangerous it was to portray suicide as a “solution” to many at-risk people.

But it became personal when my 30 year old daughter Marie killed herself using an assisted suicide technique that she learned reading the pro-assisted suicide book “Final Exit”. My Marie had struggled with drug addiction for 16 years and despite our best efforts and those of her therapists, she finally succumbed to despair. She was the only suicidal person I ever lost.

I was not surprised when two people close to Marie became suicidal after her death. Fortunately, they were saved.

Suicide contagion is not a figment of someone’s imagination but a real phenomenon. It is no coincidence that the US suicide rate has skyrocketed since Oregon first legalized physician-assisted suicide.

EUTHANASIA

I also discovered that it’s only a short step from “I wouldn’t want to live like that” for assisted suicide to “No one should have to live like that” for euthanasia.

In 2003, Dr. Lloyd Thompson, then head of the Vermont Medical Society, escaped prosecution for intentionally giving a paralyzing, “life ending drug” to an elderly woman with terminal cancer whose breathing machine had been removed. The family had opposed prosecuting the doctor.

 Ironically and around the same time, I was threatened with the loss of my job after I refused to increase a morphine drip “until he stops breathing” on an older man who did not stop breathing as expected after his ventilator was removed. The patient was presumed to have had a stroke when he did not wake up from sedation after 24 hours. I reported the situation up the chain of command at my hospital but no one supported me. I escaped termination that time but I refused to back down.

An autopsy later showed that the man had no lethal condition or brain injury.

CONCLUSION

As the late Fr. Richard John Neuhaus wisely said  ” I believe in the slippery slope the same way I believe in the Hudson River. It’s there.”

But until and unless we are ready to recognize what we unlock when we legalize “just a little bit” of medical killing, we may find that the slippery slope has no bottom and that no one is safe.

And I saw it all start with the Roe v Wade decision legalizing abortion.