Think the Political and Cultural Divisions in Our Country are Bad? The Divisions in Medical Ethics Could Cost Your or a Loved One’s Life!

I wanted to be a nurse since I was 5. I was drawn to nursing not only because I wanted to help people but also because medical ethics standards were so high, especially in contrast to some of the corrupt business practices that I saw.

I graduated from a Catholic nursing school in 1969 and spent the next 50 years working mostly in intensive care but also in home health and hospice, oncology (cancer), kidney dialysis, volunteer work and on ethics committees.

I first noticed the change in medical ethics when the US Supreme Court’s Roe v. Wade decision in 1973 legalized abortion for the first three months of pregnancy. I was working in intensive care at the time and found that my fellow medical professionals who supported the abortion decision angrily rebuked those of us who were shocked that the first rule of medical ethics we were taught-First, Do No Harm-was eroding.

Then in 1982, my doctor husband and I were shocked by the Baby Doe case where the parents received a judge’s approval to let their newborn son with Down Syndrome die instead of repairing an easily correctable hole between the tube that leads from the throat to the stomach and the  tube that leads from the throat to the windpipe and lungs.  While lawyers were appealing his case and many parents (including my husband and me) wanted to adopt Baby Doe, the newborn starved and dehydrated to death without the desperately needed surgical repair.

My husband asked “What has happened to medical ethics??” but we both knew the answer: babies with Down Syndrome are often unwanted and aborted.

Five months after Baby Doe died, our third child Karen was born with Down Syndrome and a reparable heart defect but the heart doctor gave us a choice to “let” our baby die without surgery. We refused but my former trust in the medical system was shattered.

After I suddenly became a single parent in 1988, I had to return to a paid nursing job to support my three children but found a drastically different medical ethics system.

I found that during the 1970s, medical ethics began to evolve into the newer “bioethics”, even in Catholic hospitals.

This new bioethics has essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”) Emphasis added.

Unfortunately, those principles are malleable and then used to justify actions and laws that would have been unthinkable when I graduated from nursing school. That bioethics mindset changed not only medical and nursing education but also the principles that informed our work.

Even the Hippocratic Oath, the oldest and most widely known treatise on medical ethics that forbade actions such as abortion and euthanasia that medical students routinely took upon graduation, has now been revised or dropped at many medical schools.

SOME MEDICAL ETHICS DIVISIONS THAT CAN COST YOU OR A LOVED ONE’S LIFE

Abortion

The American Medical Association, the American Congress of Obstetricians and Gynecologists and the American Nurses Association and other healthcare organization that used to condemn abortion are now supporting “abortion rights”.

Abortion on demand and taxpayer-funded has now been deemed a “civil right” by Planned Parenthood and many Democratic politicians throughout pregnancy to birth and even beyond. Alternatives to abortion such as free pregnancy tests, counseling, ultrasounds, maternity and baby clothes, diapers, car seats, bassinets, etc. are not options at Planned Parenthood but rather at non-profit crisis pregnancy centers.

As a parent of an unwed teenage daughter, I support these services and give thanks for my now 22 year old granddaughter.

Assisted suicide/euthanasia

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Treatments could be ethically refused when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube or even spoon feedings to cause or hasten a patient’s death. And it was unthinkable that medical professionals could assist even a dying patient’s suicide.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote a 1969 article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added).

By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law and in 1990, The US Congress passed the Patient Self-Determination Act that requires information to be given to patients about their rights under state laws governing advance directives (commonly called “living wills), including the right to accept or refuse medical or surgical treatments.

Now, 8 states and the District of Columbia have assisted suicide laws and Compassion and Choices, the largest advocacy group for medically assisted suicide, is using the Covid 19 pandemic to push for telehealth (the provision of healthcare remotely by means of telecommunications) for medically assisted suicide.

Infanticide

In my nursing school 50 years ago, we were taught medical ethics and one example used was the case of a newborn with Down Syndrome who needed life-saving surgery but whose parents refused, choosing to let him die. We were told that the law would protect such children from medical discrimination-even by the parents.

Now we have cases like Charlie Gard and Simon Crosier and others whose parents chose life for their babies with disabilities but were thwarted by doctors and courts.

Organ donation

When I started working in an ICU in 1971, I had questions about the brain death diagnosis for organ harvesting but was told not to worry because there were strict rules.

However and over subsequent years, I discovered that the rules for organ donation have been changing from brain death to other criteria including severe brain injury. There have even been proposals for “presumed consent” state laws where people would have to register an “opt-out” or be automatically presumed to consent to organ donation.

I do not have an organ donor card nor encourage others to sign one. Instead, I once offered to give a friend one of my kidneys as a living donor. Although I was not able to donate then, my family knows that I am willing to donate tissues like corneas, bone, etc. that can be ethically donated after natural death and will only agree to that donation

Conscience rights

Doctors and nurses used to be protected when asserting their conscience rights when refusing to deliberately hastening or causing a patient’s death.

Now, even that protection-which protects both patients and medical professionals-is under attack.

I discovered this personally several years ago when I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who didn’t stop breathing after his ventilator was removed.

CONCLUSION

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 the National Association of Pro-life Nurses, the Healthcare Advocacy and Leadership Organization and state and national pro-life organizations that have much useful information and resources for patients, families and the public.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us. We need to demand transparency and information from our doctors and healthcare system before they can earn our trust.

And without a change in laws, policies and attitudes promoting deliberate death as an answer to human suffering, those of us medical professionals who believe we should never cause or hasten anyone’s death may become an endangered species-as well as our medically vulnerable patients.

Surprising New Test for Predicting Recovery after Coma

An April 29, 2020 Nature Journal article titled “Olfactory sniffing signals consciousness in unresponsive patients with brain injuries” found that nasal response to odors (sniffing) by 43 severely brain-injured patients predicted the likelihood of recovery and long-term survival.

According to Noam Sobel, PhD, of the Weizmann Institute of Science in Rehovot, Israel, one of the authors of the article and speaking to MedpageToday:

“If you sniff at an odorant, then it’s 100% you will regain consciousness to at least a minimal level, and you will likely live for years,” he told MedPage Today. “If you don’t sniff at an odorant, that is a bad sign, but not all hope is lost.” (Emphasis added)

Amazingly, he said that 37.5% of the unresponsive patients who didn’t sniff did eventually regain consciousness.

Dr. Giacino, PhD of Harvard Medical School who helped write the 2018 American Academy of Neurology guidance on disorders of consciousness told Medpage that this study is “a cleverly and carefully designed study that adds another much-needed tool to the consciousness-detection toolbox” even though “Between 30% and 60% of patients who sustain severe TBI (traumatic brain injury) have diminished or complete loss of smell due to the mechanics of the injury.”)

He also noted that, based on available evidence, about four in 10 patients who are deemed unconscious on bedside examination actually retain conscious awareness and that “A significant portion of these patients have covert consciousness — preserved cognitive function that cannot be expressed through speech or movement.” (Emphasis added)

WHY IS THIS STUDY SO IMPORTANT?

As Dr. Giacino said in the Medpage article:

“Published evidence from Canada in a large cohort of ICU patients with traumatic brain injury [TBI] found that approximately 70% of the deaths were due to withdrawal of treatment and in about 60% of cases, the decision to stop treatment was made within 72 hours,” he said. “It’s possible that a positive sniff test might delay this decision, which is important since we know that about 20% of TBI patients who survive what appears to be catastrophic injury recover to a functionally-independent level by 5 years post-injury.” (Emphasis added)

As we have seen over the past decades, whether or not a severely brain-injured person is or can become conscious has become a life and death matter. We have seen this in the cases of Nancy Cruzan, Terri Schiavo and Zach Dunlap even though, as I wrote in my August 18, 2018 blog, “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover”.

THIS ISSUE HAS BEEN CLOSE TO MY HEART FOR DECADES.

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed ‘Mike” was comatose!

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients later woke up.

Over the years, I’ve written about several other patients like “Jack”“Katieand “Chris in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate consciousness. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

But I never even thought to give any of my patients a sniff test. What a simple test for medical professionals to do!

And even though this study is small and needs to be replicated and validated, I believe it is further evidence that we need to reevaluate our current medical ethics and laws that allow life-sustaining treatment to be withdrawn from people with severe brain injuries on the premise that such brain-injured people have no “quality of life” and that such injuries are routinely hopeless.

And I hope that the sniff test can become a standard part of all medical evaluations of people with severe brain injuries.

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.


 

A Very Special 6th Birthday Party

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.

 

 

Dying Well?

I discovered that former San Francisco Chronicle reporter Katy Butler is now publishing yet another book on dying well (her first book “Knocking on Heaven’s Door” was a best seller) when I read her lead essay in the February 8, 2019 Wall Street Journal article titled “Preparing for a Good End of Life”.

However, I recognized her name from reading her 2014 interview with Compassion and Choices , the well-funded former Hemlock Society that promotes physician-assisted suicide .

In that interview, she urged people to back the 2014 “Better Care. Lower Cost Act” sponsored by Senator Ron Wyden of Oregon “to improve appropriate medical support for people with chronic illness” and to “advocate to reduce payments to doctors who perform futile ‘Hail Mary’ surgeries, tests and treatments near the end of life”. Ms Butler also added that “we have an epidemic of unnecessary suffering at the end of life, and what’s more, it’s expensive!” (All emphasis added)

In that interview, Ms. Butler also talked about how her mother was “exhausted from nonstop caregiving” and how they fought doctors to have her father’s pacemaker turned off after he developed dementia, couldn’t walk to the neighborhood pool, became deaf and “too blind to read the New York Times-his last remaining pleasure”. Ms. Butler said she was glad to learn “from Judith Schwartz at Compassion and Choices that we each have a constitutional right to refuse any medical treatment or ask for its withdrawal.” (Compassion and Choices also promotes VSED, the voluntary stopping of eating and drinking, as well as terminal sedation as two legal options to hasten death in states without physician-assisted suicide laws.)

SCARE TACTICS?

In the Wall Street Journal article, Ms. Butler flatly states-without a source-that “Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain.” (Emphasis added)

However, in an article “Pain Control at the End of Life” , June Dahl, PhD, a professor of pharmacology at the University of Wisconsin at Madison, and a founder of the American Alliance of Cancer Pain Initiatives states that:

“Thanks to recent advances in pain treatments, roughly 90 to 95 percent of all dying patients should be able to experience substantial relief from pain.”

Although Ms. Butler doesn’t mention physician-assisted suicide specifically, she does strongly advocate taking control of how we die, especially as we get older, because “Advanced medicine is replete with treatments (ventilator, dialysis, defibrillators, feeding tubes, to name a few) that postpone death and prolong misery without restoring health“. (Emphasis added)

She writes that “The best way to achieve a peaceful death is by planning ahead and enlisting the help of loved ones.”

In the Wall Street Journal article, she approvingly writes:

“When Liz Salmi’s mentor lay unconscious on a ventilator in a dark, windowless ICU room, attended by a cacophony of hisses and electronic bloops, she and other close friends lobbied for a better setup. All monitors but one were silenced, a doctor removed the breathing tube, and nurses and aides gurneyed her dying friend quickly into the ICU’s “best room”—a sunny spot, with windows opening to the outdoors.” (Emphasis added)

In this instance, note that the friends-apparently not the family or a “living will”- lobbied  the doctor to remove (not try to wean off) the ventilator. I am not surprised since I have personally heard some doctors say that, if in doubt, it might be legally safer not to treat rather than treat a patient because of the risk of a future lawsuit.

These kinds of articles and books are being used as “end-of-life education” for both the public and professionals. Can this be dangerous?

CAN WHAT YOU SAY POTENTIALLY BE USED AGAINST YOU?

My own mother often told me “I never want to be a burden on you children”. Then she developed Alzheimer’s and a terminal thyroid cancer. I was asked if the family wanted her fed if she got worse. “Of course, if she needs it”, I responded. My mother should die from her condition, not from starvation and dehydration. I  never told the doctors her comment about not wanting to be a burden because she wasn’t a burden. Mom died shortly after she went to a nursing home for safety reasons and we spoon-fed her at the end. She had no pain, thanks to a short course of radiation and chemo that she tolerated. My last memory of my mother was her smiling and enjoying the attention of her family before she died in her sleep.

In 1990, 2 years after my mother’s death, Nancy Cruzan died after 12 long days without a feeding tube, even after the US Supreme Court ruled that Missouri could require “clear and convincing evidence” that she would not want a feeding tube if she was in a “vegetative state.” At the time of the decision, there was no evidence of this.

However, Nancy’s parents later returned to a Missouri court with some of Nancy’s former co-workers who testified that they recalled her saying she would never want to live ‘like a vegetable’.

Three years later in a letter published in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that this “proof” of Nancy Cruzan’s alleged statement rested only on “fairly vague and insubstantial comments to other people”.

However and most disturbing, he also wrote that:

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

CONCLUSION

As a hospice and critical care nurse, I strove to make sure dying patients and their families had a good death, either in a hospital or other institution or at home.

Personally, my husband and I also made a careful durable power of attorney document that only designates each other as our decision maker with the right to make decisions about our care rather than signing a “living will” to refuse potential future treatments or set possible future conditions like dementia where we would want treatment stopped or withheld. Instead, we want all current options, risks and benefits of treatment fully explained to the decision maker based on the current condition.

I also encourage people to check out information sites like the Healthcare Advocacy and Leadership organization (I am an advisor) and magazines like “Informed-A Guide for Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, use and misuse of opioids and sedatives as well as other end of life considerations.

Death is a journey we all will take someday. Especially in today’s world, we should protect ourselves and our loved ones by trying to ensure a truly good death.

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as definite, but extremely limited, awareness of self or environment, and limited means of communication. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention 1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or limited consciousness with verbal and physical stimulation. I also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate healing of the brain. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

 

 

 

 

 

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!

 

 

Doctors Face Scrutiny About Defining Brain Death

Most people who sign organ donor cards believe what organ donation campaigns tell us, such as:

“A person who has sustained a severe brain injury, such as from an accident, stroke or lack of oxygen is put on artificial support.

Doctors work hard to save the patient’s life, but sometimes there is a complete and irreversible loss of brain function. The patient is declared clinically dead. Only then is donation an option.” (Emphasis added)

This is termed “brain death” and organs are harvested while the patient is still on a ventilator (breathing machine) and has a heartbeat.

But as a May 29, 2018 Wall Street Journal article Doctors Face Scrutiny About Defining Death- As families challenge the determination of brain death, physicians are changing their approach.”, the assumptions about brain death are now being challenged because of cases like Jahi McMath, a 13 year old girl who suffered complications after a 2013 tonsillectomy in California and was declared “brain dead” but who is still alive in New Jersey after her parents refused to allow the ventilator to be removed.

With this article as well as a February 5, 2018 New Yorker magazine article titled “What Does It Mean to Die?” about the McMath case, the public is now becoming aware of the ethical, legal and medical controversies surrounding “brain death” and questions are being asked.

One doctor quoted in the Wall Street Journal article stated:

“Dr. Ross believes states should adopt laws that would allow people to choose their preferred definition (of death). One likely consequence would be that physicians wouldn’t do the brain-death examination if an individual doesn’t want death determined based on neurological criteria, she says.

For some of us, it is more about the quality of life rather than quantity of life,” she says.” (Emphasis added)

Alarmingly, the use of “quality of life” determinations as a basis for withdrawal of treatment decisions expected to end in death are already a serious problem when it comes to people with brain injuries or disabilities.

And doctors like Dr. Doyen Nguyen are writing articles like Brain Death and True Patient Care” that cite encouraging results regarding survival and even some good recoveries when severely brain-injured patients received newer treatments like body cooling and neuro-intensive care.

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.

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 several 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.

It was years before I realized that these doctors did not have the answers to my concerns either. After more investigation, I found that my questions were valid.

I also 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 many cases of “brain dead” people who lived for months or years and even grew proportionally and achieved puberty.

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

And when I served on a hospital medical ethics committee, I was horrified when one doctor found a less rigorous set of brain death tests at another local hospital and proposed that we adopt this standard so that more of our patients could be declared “brain dead” for organ donation.

Investigating further, I also found “near-miss” cases like Zach Dunlap’s. Zach Dunlap is a young man who was declared brain dead after an accident in 2007. Testing showed no blood flow to his brain and he was being considered for organ donation when a relative discovered a physical response. Four months later, Zach was making plans to return to work. In an interview, he said he heard a doctor say he was dead and it “just made me mad inside”.

CONCLUSION

As I pointed out in my Spring, 2016 NCBC Quarterly journal article titled “Brain Death: Do We Know Enough?” :

“When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.” (Emphasis added)

Personally, I am not against all organ donation.

In the past, I have offered to be a living donor for a friend who needed a kidney, watched my grandson cured of a rare disease through a bone marrow transplant and told my family that I wanted to donate my corneas and any other tissues that can be taken after natural death.

I am open to new facts but, until then, I refuse an apnea test or any other test to specifically determine brain death if I have a severe brain injury.

And I will not sign an organ donor card.

 

 

The Changing Rules for Organ Donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

 

Do Pro-Lifers Really Believe That “Life Begins at Conception and Ends at Birth”?

meeting Kaylee

One of the most frequently repeated myths in the abortion debate is that pro-lifers really don’t care about life. Some abortion supporters even maintain that pro-lifers believe “life begins at conception and ends at birth”   and do nothing for women and babies after birth.

The picture above is of me holding my newest granddaughter Kaylee Marie for the first time on May 17, 2017. Of course, we think she is gorgeous and are thrilled that she is a healthy 7 lb. 8 oz.

Some babies are not born so fortunate. Kaylee’s late Aunt Karen was born in 1982 with a severe heart defect as well as Down Syndrome and faced medical discrimination regarding heart surgery. The ones who stepped up to help were not the so-called “pro-choice” people but rather people who were pro-life.

It was after Karen that I actively joined the pro-life movement and learned that pro-lifers not only helped women and babies in crisis pregnancies but were also active in helping people of all ages and conditions as an antidote to the culture of death.

These wonderful people inspired me to get into personally helping families caring for babies with disabilities, working with people who had severe brain injuries and volunteering with people who had terminal illnesses, dementia or suicidal ideation.

And now, of course, I am also helping my daughter and her husband to get some sleep and adjust to the awesome responsibility and joy of their first child, baby Kaylee.

CONCLUSION

Kaylee’s mom was my next child after Karen. Foregoing medically unnecessary prenatal testing, I happily carried my daughter Joy with the certain knowledge that every child is truly a gift from God and that you can never lose when you love.

Abortion of any baby is ultimately a failure of  that love and reality. We in the pro-life movement are committed to promoting the best for all babies-even the planned and dearly wanted ones like Kaylee Marie-as well as their moms.

This is because pro-life is really an attitude of caring and helping, not political ideology.