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.

The World Brain Death Project: What It Means

THE HISTORY OF BRAIN DEATH

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

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

This was done for two stated  reasons:

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

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

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

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

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

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

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

Why just consent to brain death testing?

According to Mr. Pope:

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

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

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

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

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

THE WORLD BRAIN DEATH PROJECT

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

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

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

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

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

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

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

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

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

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

CONCLUSION

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

The law states that:

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

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

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

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


 

Palliative Care and Artificial Intelligence for Predicting Death

Working in areas like critical care, oncology (cancer) and hospice for over 45 years, I know that it is often hard to predict how long someone may live or when that person may die.

I have seen very ill or injured people with an optimistic prognosis  unfortunately die and I have seen people expected to die very soon who recovered and went on to live for years. Back then, we used pain and other specialists, social workers, ministers, etc. for all our patients when needed. Some of our patients went into hospice.

In recent years, a new specialty called palliative care was developed to improve the quality of life for patients who have a serious or life-threatening disease with the goal of preventing or treating as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems.

So I was very interested to read a July 1, 2020 article in StatNews titled “An experiment in end-of-life care: Tapping AI’s cold calculus to nudge the most human of conversations about using cutting-edge artificial intelligence (AI) models in palliative care that scan patient hospital medical records and generate emails to doctors about their patients considered most likely to die within a year.

In the case of one doctor who received such an email,  she “was a bit surprised that the email had flagged” her patient who was in his 40s and seriously ill with a viral respiratory infection and too sick to leave the hospital. She thought “Why him? And should she heed the suggestion to have that talk?”

As the article states, those kinds of questions are increasingly cropping up among health care professionals at the handful of hospitals and  clinics around the country using such AI models in palliative care, stating that:

The tools spit out cold actuarial calculations to spur clinicians to ask seriously ill patients some of the most intimate and deeply human questions: What are your most important goals if you get sicker? What abilities are so central to your life that  you can’t imagine living without them? And if your health declines, how much are you willing to go through in exchange for the possibility of more time? (Emphasis added)

Some clinicians and researchers defend this AI by saying that doctors are “stretched too thin and lacked the training to prioritize talking with seriously ill patients about end-of-life care”.

Not surprisingly, the leaders of this palliative care AI discourage doctors from mentioning to patients that they were identified by an AI system because, as one doctor put it, ”To say a computer or a math equation has predicted that you could pass away within a year would be very, very devastating and would be really tough for patients to hear.”

Shockingly, while this AI is built around patients’ electronic health records, this article admits that some AI models also “sample from socioeconomic data and information from insurance claims.” (Emphasis added)

CAN AI RELIABLY PREDICT DEATH?

As the article admits, AI predictions of death “are often spotty when it comes to identifying the patients who actually end up dying” and that there has not been “a gold-standard study design that would compare outcomes when some clinics or patients are randomly assigned to use the AI tool, and others are randomly assigned to the usual strategies for encouraging conversations about end-of-life care.” (Emphasis added)

Nevertheless, using AI death predictions for earlier palliative care interventions is now also being tried for conditions like dementia. And last year in Great Britain, AI was touted as “better than doctors” in analyzing heart tests to determine which patients would die within a year.

ARE THERE OTHER AGENDAS?

The idea of basing medical decisions on a computer program to predict death is disturbing enough but there may be other agendas involved.

For example, in a May, 2020 Cancer journal article titled  “Leveraging Advances in Artificial Intelligence to Improve the Quality and Timing of Palliative Care”, the authors called palliative care “a discipline of increasing importance in the aging population of the industrialized nations.”  (Emphasis added

And according to a Hospice News article last year:

“Studies have found that palliative care saves health plans, health systems, and accountable care organizations close to $12,000 per person enrolled, as well as reducing hospital readmissions, emergency department visits, and hospice lengths of stay. “

Now Compassion and Choices (the former Hemlock Society) is not only fighting to legalize medically assisted suicide throughout the US, it has also been active in promoting training and expansion of palliative care with federal funding and now calls assisted suicide “one option in the palliative continuum” and that knowing assisted suicide “is an option is in itself palliative care.” (Compassion and Choices already maintains that VSED (voluntary stopping of eating and drinking) is already an ethical and legal means of ending life in the US.)

Even worse, a large and growing number of medical organizations-including the American Academy of Hospice and Palliative Medicine (AAHPM)-have endorsed or taken a neutral position on the issue of physician-assisted suicide.

CONCLUSION

An artificial intelligence program predicting death cannot replace the importance of an ethical healthcare provider who knows and truly respects the lives of his or her patients.

Good palliative care can be wonderful but, as I have written before, palliative care can go horribly wrong when misused.

We need to know the difference before we are able to trust that our own healthcare providers will  give all of us the care we need and deserve, especially at the end of our lives.

 

Sweden and Covid 19: Families Complain That “Palliative Care” Instead of Treatment Is Being Given to the Elderly

A June 18, 2020 article in the Wall Street Journal titled “Coronavirus is taking a high toll on Sweden’s elderly. Families blame the government”  starts with a disturbing story:

“When 81-year-old Jan Andersson fell ill with Covid-19 at a nursing home in the Swedish town of Märsta, a doctor consulted by phone ordered palliative care, including morphine, instead of trying to help him fend off the infection.

Mr. Andersson’s son, Thomas Andersson, says he was told his father was too frail for other treatment. The younger man disagreed and, after arguing with the physician, summoned journalists and insisted his father be given lifesaving care. Mr. Andersson has since recovered.

The county that runs Mr. Andersson’s nursing home said all decisions on medical treatment for the residents were made by doctors employed by a company that provides medical services. (All emphasis added)

The Wall Street Journal reports that cases like this have sparked a public outcry from not only relatives but also from some doctors and nurses. There is now an investigation by Swedish national health-care authorities into the treatment of older patients in nursing homes and Stockholm hospitals. There are now 5,041 people in Sweden who have died from Covid 19 with about half being nursing home residents.

“Many people have died unnecessarily,” said Yngve Gustafson, a geriatric-medicine specialist in Sweden, who looked into more than 200 cases in which people were denied care. He said that doctors were too quick to put patients on palliative care. He also said that he believed many would have survived and lived year longer had they been provided basic care.

Furthermore, a June 12, 2020 British Medical Journal article “Has Sweden’s controversial covid-19 strategy been successful?” stated that Dr. Gustafson also spoke to the Svebsja Dagbladet newspaper and “expressed concern about the increasing practice of doctors recommending by telephone a “palliative cocktail” for sick older people in care homes.

He also was quoted as saying:

“Older people are routinely being given morphine and midazolam, which are respiratory-inhibiting,” … “It’s active euthanasia, to say the least.”

Thomas Linden, chief medical officer of Sweden’s National Board of Health and Welfare, said the triage guidelines for Covid 19 were developed to prepare the health-care system for a potential crisis while ensuring best-possible treatment for all patients.

However, the Wall Street Journal article reports that Swedish critics say these guidelines have too often resulted in older patients being denied treatment, even when hospitals were operating below capacity.

“Dr. Cecilia Söderberg-Nauclér, a physician at Karolinska University Hospital in Stockholm, said that “the ICU wards were comparatively empty “because elderly people were not taken to hospitals—they are given sedatives but not oxygen or basic care.”

The Wall Street Journal article also notes that “About 90% of nursing-home residents who succumbed to Covid-19 in Sweden were never admitted to a hospital, according to official estimates. ” (Emphasis added)

Most poignantly, Latifa Löfvenberg, a nurse  for a company providing medical services to several nursing homes, said she sought treatment for residents with Covid-19 and was told by company physicians to administer morphine and a sedative.

She  described what happened:

People suffocated, it was horrible to watch. One patient asked me what I was giving him when I gave him the morphine injection, and I lied to him,” said Ms. Löfvenberg, who is now working at a hospital in the Swedish capital. “Many died before their time. It was very, very difficult.” (Emphasis added)

COULD-OR HAS-THIS HAPPENED IN THE US?

As I wrote in my May 20, 2020 blog “Covid 19 and the Culture of Death” about the dangerous and unethical responses to Covid 19 in the US:

“(T)he 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)

However, access to the actual crisis standards is restricted to NHPCO members only.

But transparency is not the only  problem.

Unfortunately, I have also personally and professionally seen cases of deliberate overdose sedation. I have written about this, most recently in my 2019 blog When Palliative Care goes Horribly Wrong”.

CONCLUSION

While Sweden has not yet legalized physician-assisted suicide, Sweden’s National Board of Health and Welfare did authorize passive euthanasia in 2010, whereby “patients may request the termination of their treatment knowing that this will lead to their death”. This ruling came in response to a request by a 32 year old woman who was totally paralyzed and dependent on a ventilator since the age of six. She requested it be shut off when she was asleep. Whether or not she received a “palliative cocktail” beforehand is unknown.

Now, Swedish officials seem to have forgotten the part about “patient request” when it comes to Covid 19 and the elderly.

In the US, we started down a similar path when “right to die” groups focused on “living wills” and withdrawal of even basic treatment before outrightly promoting physician-assisted suicide.

The bottom line for any country is that we must not lethally discriminate against anyone, regardless of age or condition like Covid 19 and we must hold palliative care to the high standards set by the late Dame Cicely Saunders,  founder of hospice movement (1918 – 2005) who said:

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” (Emphasis added)

 

 

 

Over 600 Doctors Send Powerful Letter to President Trump Calling the Covid 19 Lockdown a “Mass Casualty Incident”

Although it received little media notice, a May 19, 2020 letter to President Trump signed by over 600 doctors detailed the physical and mental impact of the lockdown in the US due to Covid 19, calling it a “mass casualty incident” with “exponentially growing negative health consequences” to millions of non-COVID patients. 

As the highly contagious Covid 19 virus was spreading around the world, President Trump issued a proclamation on March 12, 2020 declaring a national emergency with “preventive and proactive measures to slow the spread of the virus and treat those affected”.

On March 18, the Centers for Medicare and Medicaid Services recommended that hospitals cancel all elective surgeries and nonessential medical, surgical and dental procedures to prepare for the expected deluge of patients with Covid 19 and the health system complied.

Regular healthcare became virtually suspended as states went to lockdown with rules to shelter in place except for essential errands or work. Schools and many businesses were closed. 

Ironically,  except for New York and other hotspots that received massive federal help including ventilators and emergency field hospitals, US hospitals wound up with many empty beds and even emergency room visits dramatically declined

Many hospitals are now facing a financial crisis and health care professionals are being furloughed.

THE IMPACT OF THE LOCKDOWN ON AMERICANS’ PHYSICIAL AND MENTAL HEALTH

The doctors’ letter to President Trump focused on the devastating impact on Americans’ physical and mental health of the lockdown and why the months-long lockdowns should be ending. 

Here are some excerpts:

“Suicide hotline phone calls have increased 600%,” the letter said. Other silent casualties: “150,000 Americans per month who would have had new cancer detected through routine screening.”

“Patients fearful of visiting hospitals and doctors’ offices are dying because COVID-phobia is keeping them from seeking care. One patient died at home of a heart attack rather than go to an emergency room. The number of severe heart attacks being treated in nine U.S hospitals surveyed dropped by nearly 40% since March. Cardiologists are worried “a second wave of deaths” indirectly caused by the virus is likely.

“The millions of casualties of a continued shutdown will be hiding in plain sight, but they will be called alcoholism, homelessness, suicide, heart attack, stroke, or kidney failure. In youths it will be called financial instability, unemployment, despair, drug addiction, unplanned pregnancies, poverty, and abuse.

“It is impossible to overstate the short, medium, and long-term harm to people’s health with a continued shutdown,” the letter says. “Losing a job is one of life’s most stressful events, and the effect on a person’s health is not lessened because it also has happened to 30 million [now 38 million] other people. Keeping schools and universities closed is incalculably detrimental for children, teenagers, and young adults for decades to come.” (All emphasis added)

But while nearly all 50 states are starting to relax lockdown rules to some extent, some officials are threatening to keep many businesses closed and other draconian measures in place until August or even later. Many schools and universities now say they may remain closed for the remainder of 2020.

But as Dr. Marilyn Singleton, a California anesthesiologist and one of the signer of the letter said, “Ending the lockdowns are not about Wall Street or disregard for people’s lives; it’s about saving lives.” (Emphasis added)

CONCLUSION

We know a lot more about Covid 19 now. The US Center for Disease Control’s new ‘best estimate’ implies a COVID-19 Infection fatality rate below 0.3% with an estimated 35% of people with Covid 19 never having symptoms. 

States have rescinded orders that forced long term care facilities with our most vulnerable people to admit Covid 19 patients after hospital discharge resulting in lethal outbreaks.

But as more states are slowly opening, Grace-Marie Turner of the Galen Institute writes:

“Will patients come back? COVID-phobia is deathly real.

Patients still are fearful about going to hospitals for heart attacks and even for broken bones and deep lacerations. Despite heroic efforts by physicians to deeply sanitize their offices, millions have cancelled appointments and are missing infusion therapies and even chemotherapy treatments. This deferred care is expected to lead to patients who are sicker when they do come in for care and more deaths from patients not receiving care for stroke, heart attacks, etc.”

While still observing social distancing, sanitizing and other common sense measures to protect ourselves and others, it is my opinion that the more than 600 doctors writing to President Trump are right when they urge ending the Covid 19 shutdown as soon as possible for all Americans’ physical and mental health.

 

 

 

 

 

 

 

Covid 19 and the Culture of Death

“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.

 

 

Covid 19 and Nursing Homes

Recently, two good friends of mine with physical limitations who had been waiting for over a year to enter a carefully chosen assisted living/long term healthcare facility changed their minds about going. They found out that the facility had at least one resident with Covid 19. They are now staying at home with help from their sons, friends and a paid caregiver.

And my 97 year old friend Melissa with heart and mobility problems is adamant about staying at home to be cared for, primarily by her wonderful family. Recently, she developed a disturbing symptom but instead of going to her doctor as usual, her doctor was able to come to her via a telehealth visit by computer. Melissa is happy at home and knows that other options like home hospice are available if necessary.

Are these three people overreacting about nursing homes?

In my opinion, the answer is probably no at this time.

Unfortunately, long-term health facilities for the elderly have become hotbeds for Covid 19 despite those residents being the most at risk during the pandemic. A number of  staff at those facilities have also caught Covid 19 and some have also died.

Even worse, as NBC News reported April 25, 2020:

“Three states hit hard by the pandemic — New York, New Jersey and California — have ordered nursing homes and other long-term care facilities to accept coronavirus patients discharged from hospitals.” (Emphasis added)

On May 6, 2020, the Wall Street Journal reported that New York nursing homes may have nearly 5,000 Covid-19 related deaths and the next day, the California Mercury News  reported that  “at least 41 percent of all known coronavirus deaths in California have occurred among residents and staff of nursing homes and assisted living facilities.” (Emphasis added)

And, unfortunately, these same people are usually dying alone due to restrictions for even family members in hospitals and nursing homes. Sadly, even funerals are changing with new restrictions for ceremonies and mourners.

According to an April 21, 2020 article “Nursing Homes Balk at COVID Patient Transfers From Hospitals” by the American Association for Retired Persons (AARP):

“The American Health Care Association says discharged hospital patients should return only to nursing homes with separate COVID-19 units. Ideally, those units are staffed with employees with access to personal protective equipment. The federal Centers for Medicare & Medicaid Services (CMS), which regulates nursing homes, endorsed the idea of separate COVID units this month.” (Emphasis added)

CONCLUSION

I was personally shocked to discover that  only  23 states publicly reported data for cases and deaths due to COVID-19 in long-term care facilities  as of April 23, 2020.

However, the Trump administration has recently announced upcoming new regulatory requirements that:

“will require nursing homes to inform residents, their families and representatives of COVID-19 cases in their facilities. In addition, as part of President Trump’s Opening Up America, CMS will now require nursing homes to report cases of COVID-19 directly to the Centers for Disease Control and Prevention (CDC).” (Emphasis added)

When my mother with Alzheimer’s disease was dying from cancer in 1988, there was no pandemic and we cared for her at home as long as possible before placing her in a nursing home nearby for safety reasons. So I do know that nursing homes and other long-term care facilities can be wonderful and even necessary options.

But until this pandemic dissipates, we need all the essential information  necessary to protect and advocate for the most vulnerable among us.

CPR (Cardiopulmonary Resuscitation) in the age of Covid 19-What You Need to Know

Several years ago, a nurse friend was with her boyfriend at a concert hall when he collapsed with no heartbeat or breathing. She called for 911, started CPR and asked for an AED (automatic external defibrillator) , which is located in most offices and public buildings. An AED is a sophisticated, yet easy-to-use (even for a lay person with training), medical device that can analyze the heart’s rhythm and, if necessary, deliver an electrical shock, or defibrillation, to help the heart re-establish an effective rhythm.

However, the concert staff didn’t know where it’s AED was.

My friend continued to deliver mouth to mouth an chest compressions while a crowd gathered, some of whom were physicians who told her to stop because it was hopeless.

Finally, an ambulance arrived and took the boyfriend to a local hospital. He not only survived but was discharged 3 days later in good condition and determined to start a healthier lifestyle.

So I was stunned to read an April 21, 202 New York Post article “NY issues do-not-resuscitate guideline for cardiac patients amid coronavirus” (Covid 19) that said New York state had just issued “a drastic new guideline urging emergency services workers not to bother trying to revive anyone without a pulse when they get to a scene, amid an overload of coronavirus patients.” (Emphasis added)

While paramedics were previously told to spend up to 20 minutes trying to resuscitate a person in cardiac arrest, the new guideline was deemed “necessary during the COVID-19 response to protect the health and safety of EMS providers by limiting their exposure, conserve resources, and ensure optimal use of equipment to save the greatest number of lives.’’

First responders were outraged and their union leader said “Our job is to bring patients back to life. This guideline takes that away from us.”

Earlier this month, the Regional Emergency Services Council of New York had issued a new guideline that said cardiac arrest patients whose hearts can’t be restarted at the scene should no longer be taken to the hospital for further life-saving attempts because the city hospitals had been “inundated with dying coronavirus patients to the point where there are frequently no ICU beds.”

One paramedic acknowledged that only a small percentage of people in cardiac arrest-3 or 4 out of 100-are brought back to life through  CPR and other aggressive interventions such as drugs and hospitalization but insisted that “for those three or four people, it’s a big deal.”

On April 22 and just hours after the initial New York Post article was published, the new guidelines were rescinded. New York City’s Fire Department and first responders never adopted the no-revival directive from the state and kept using the traditional 20-minute policy.

WOULD YOU KNOW WHAT TO DO IF SOMEONE COLLAPSES WITH NO HEARTBEAT OR BREATHING?

When I started as a nurse in many decades ago, we were trained in CPR and taught how to use AMBU bags (mask, valve and self-inflating bag) to breathe for patients in arrest or distress in place of mouth to mouth resuscitation. AMBU bags are now standard equipment on ambulances and other rescue services.

Over the years, techniques for CPR changed especially in 2008 when the American Heart Association released new recommendations that bystanders can skip mouth to mouth resuscitation and use “Hands-Only CPR” to help an adult who suddenly collapses:

“In Hands-Only CPR, bystanders dial 9-1-1 and provide high-quality chest compressions by pushing hard and fast in the center of the victim’s chest.”

Now, the Covid 19 pandemic has changed CPR guidelines.

As the April 16, 2020 Notre Dame Fire Department concisely explains on pandemic-modified CPR guidelines for bystanders:

“Bystander CPR (cardiopulmonary resuscitation) improves the likelihood of an individual’s survival from cardiac arrest occurring outside of the hospital. However, coronavirus is spread through respiratory droplets when an infected person coughs, sneezes or talks. If a rescuer breathes into a cardiac arrest individual’s mouth, there will likely be an exchange of respiratory droplets. Household members who have been exposed to the individual at home should not hesitate to attempt life-saving rescue measures.

A non-household bystander who attempts to rescue a cardiac arrest individual should wear a face mask or cloth over his/her mouth and nose and place a face mask or cloth over the mouth and nose of the individual to reduce the risk of transmission.

In the case of an adult in cardiac arrest, lay rescuers should perform at least hands-only CPR. For children, lay rescuers should perform chest compressions and consider mouth-to-mouth ventilation, if willing and able, given the higher incidence of respiratory arrest in children.

To perform Hands-Only CPR, you place your hands in the center of the chest and pump hard and fast at a rate of 100 to 120 compressions per minute.

If an AED (automated external defibrillator) is available, please proceed with opening the AED and following the automated prompts to initiate life-saving intervention. Defibrillation is not expected to be a highly aerosolizing procedure. If an AED is not available, please proceed with Hands-Only CPR.

For all cardiac related emergencies, EMS (911) should be called…For more information, refer to the American Heart Association’s interim CPR guidance.

CONCLUSION

As a nurse, I have participated in many instances of cardiac or respiratory arrest and it’s always stressful. However, the joy of participating in saving someone’s life is indescribable. And even when we were unsuccessful, we had the consolation of knowing that we did everything we could for that person.

I encourage everyone to take a course to learn CPR. To find such a course, you can contact your local hospital or go to the American Heart Association’s Find A Course  or to the Red Cross website.

And I personally thank the courageous New York Fire Department and first responders for upholding the standards of care for all their patients.