Why “Living Wills” Are Not Working Well

In a stunning October 8, 2021 article titled “What’s Wrong With Advance Care Planning? in the prestigious Journal of the American Medical Association, three prominent supporters of “living wills” and other advance care documents admit that after 30 years of the promotion of such advance care plan (ACP) documents:

“The assumption that ACP will result in goal-concordant end-of-life care led to widespread public initiatives promoting its use, physician reimbursement for ACP discussions, and use as a quality measure by the Centers for Medicare & Medicaid Services, commercial payers, and others. However, the scientific data do not support this assumption. ” (Emphasis added)

Drs. R. Sean Morrison, Diane E Meier, and Robert M. Arnold are prominent doctors and ethicists at prestigious institutions who have long promoted the advance care documents that are asked about when people enter hospitals, nursing homes, long care facilities, etc.

I have been writing about such documents and their uses and hazards for decades.

ACPs were promoted as essential to document a person’s healthcare wishes like Do Not Resuscitate orders and forgoing interventions like feeding tubes and ventilators in the event that the person is unable to speak for himself or herself. Many such documents also designate a trusted friend or relative to assist in the potential future decision-making process.

All adults have been encouraged to make such documents regardless of their health status because it was assumed that such ACPs would lead to higher quality care at the end of life.

But, as the authors now admit: “The inability of ACP to achieve its desired outcomes represents the gap between hypothetical scenarios and the decision-making process in clinical practice settings.” (Emphasis added)

After 52 years of experience working in ICUs, oncology (cancer), dialysis, hospice and home health as well as caring for relatives and friends, I wholeheartedly agree with the authors that:

“Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid. Patients’ preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden (eg, need to provide personal care, time off from work, emotional strain, out-of-pocket or noncovered medical costs), which change over time.” (Emphasis added)

WHAT DOES WORK?

The authors point to the patient having a trusted person in advance to act as a surrogate decisionmaker and improving the communication with healthcare providers in real time. They also point to:

“training clinicians and preparing patients and families to engage in high-quality discussions when actual (not hypothetical) medical decisions must be made is needed to achieve the outcomes that ACP has not.” (Emphasis added)

However, pitfalls still remain.

Patients and their decisionmakers do need accurate information about their conditions and potential treatments.

However, as I found as a nurse, patients and their surrogate decisionmakers often have negative preconceptions (often reinforced in the media) about treatments such as cardiopulmonary resuscitation, ventilators, feeding tubes, etc.

Unfortunately in hospital situations, the advance care plans with the common DNR (do not resuscitate) directive are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances. And some healthcare institutions have medical futility policies that allow doctors to overrule the person’s decisionmaker.

In addition, we have well-funded organizations like Compassion and Choices that not only work to get assisted suicide laws passed in every state but also promote their own advance directive to allow the lethal “healthcare option” of VSED (voluntary stopping of food and water) to ensure death.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward and can relieve any guilt in the surviving relatives.

CONCLUSION

I was surprised but very pleased to read that the three prominent doctors writing the article “What’s Wrong With Advance Care Planning?” after years of promoting “living wills” and other end of life documents.

But, in the end, the real answer is a return to the traditional medical ethics of “First, do no harm”, a presumption for life and excellent, unbiased information.

That is why my husband and I made our own healthcare directives to require full information about all options, risks and benefits before making medical decisions.

And, most importantly, that we believe that “quality of life” is something to be improved, not judged.

The “Population Bomb” Fizzles, but Now There is a Birth Dearth with Grave Consequences in Many Countries

 Dr. Paul R. Ehrlich was an entomologist (a scientist who specializes in the study of insects)  at Stanford University when he published his bestseller “The Population Bomb” in 1968.  Although initially ignored, it incited a worldwide fear of overpopulation and ultimately became one of the most influential books of the 20th century.

In his book, Ehrlich predicted that unless population decreased, “hundreds of millions of people are going to starve to death” in the 1970s.

That did not happen but 50 years later in a 2018 interview with Smithsonian magazine writer Charles C. Mann, Paul Ehrlich claimed that the book’s main contribution was to make population control “acceptable” as “a topic to debate.”

However, as Mr. Mann wrote:

” But the book did far more than that. It gave a huge jolt to the nascent environmental movement and fueled an anti-population-growth crusade that led to human rights abuses around the world.” (Emphasis added)

But even 50 years later and with the population declining in many countries, Paul Ehrlich continued to insist that:

“Population will fall, either when people choose to dramatically reduce birthrates or when there is a massive die-off because ecosystems can no longer support us. (Emphasis added)

THE HARSH REALITY TODAY

In 1980, China began a strict one child per married couple policy that even included forced abortions for women who did not comply.

In 2015, China raised the limit to two children, citing a “rapidly aging society and a shrinking working-age population”.

China has now increased the number of children to 3 children but as a June 3, 2021 Wall Street Journal article states “China Delivers Three-Child Policy, but It’s Too Late for Many.

Even with years of declining birthrates, there are fewer young people willing to buck the trend of postponing or forgoing marriage and children.

The result is an aging population with a shortage of children. In one Chinese province almost 40% of the province’s population of 880,000 are 60 or older and there is a surging demand for nursing homes. The local government is looking for private investors to help some 7,000 elderly residents who cannot take care of themselves.

Even beyond China, a May 22, 2021  New York Times article titled Long Slide Looms for World Population, With Sweeping Ramifications recognized that:

“All over the world, countries are confronting population stagnation and a fertility bust, a dizzying reversal unmatched in recorded history that will make first-birthday parties a rarer sight than funerals, and empty homes a common eyesore.” (Emphasis added)

HUNGARY FIGHTS BACK

A replacement rate of about 2.1 is necessary to sustain a population but the population in Hungary had been declining since 1981. It reached an all-time low of 1.23 in 2011.

Katalin Novák, the Minister for Family Affairs in Hungary, has facilitated a family-friendly approach that has seen birth rates start to rise. The birth rate is now up to 1.56, still low but improving.

As Minister Novak states:

“The government’s measures of the past ten years have evidently moved demographics in the right direction. The number of childbirths, abortions, the infant mortality rate, marriages, and divorces have all moved in a favorable direction. This also proves that we have made the right decision when we made family-centered governance a priority and are now on the right path. Families are enjoying government support, and we are helping our youth by giving them the opportunity to start a family whenever they want.” (Emphasis added)

THE SITUATION IN THE UNITED STATES

As of 2019 (the latest year for which data is available), the U.S has the lowest fertility rate on record and the lowest number of births in 35 years.

As the New York Times noted in its article about population decline:

“The change may take decades, but once it starts, decline (just like growth) spirals exponentially. With fewer births, fewer girls grow up to have children, and if they have smaller families than their parents did — which is happening in dozens of countries — the drop starts to look like a rock thrown off a cliff. (Emphasis added)

CONCLUSION

The “population bomb” theory has had unintended and disastrous consequences, even in the U.S. and despite immigration.

In 2018, a US Census Bureau article predicted “The Greying of America: More Older Adults than Kids by 2035 for the first time in US history-joining other countries with large aging populations.

As the US Census Bureau states:

“With this swelling number of older adults, the country could see greater demands for healthcare, in-home caregiving and assisted living facilities. It could also affect Social Security. We project three-and-a-half working-age adults for every older person eligible for Social Security in 2020. By 2060, that number is expected to fall to two-and-a-half working-age adults for every older person.” (Emphasis added)

A country with more older people than children can unbalance a society socially, culturally and economically.

Even worse, legalizing abortion and assisted suicide/euthanasia will only make the situation more dire the US.

Since the US Supreme Court legalized abortion in 1973 with the Roe v. Wade decision,  more than 62,000,000 abortions have been performed and now the new Biden administration wants to roll back restrictions on abortion  and make abortions taxpayer-funded

And as efforts by groups like Compassion and Choices to legalize assisted suicide throughout the US has now spread to 9 states and the District of Columbia despite pro-life and disability rights opposition, we should not be surprised if there is another US Supreme court case in the future like the 1997 Vacco v Quill Supreme Court case  that attempted to establish physician-assisted suicide as a fundamental right for the terminally ill like the Roe v. Wade abortion decision legalizing abortion for (initially) just women in the first three months of pregnancy. 

Instead of threats to human beings at the beginning and end of life, we should be welcoming new lives and families as well as caring for the elderly, disabled and poor to improve and stabilize ourselves and our country.

NEW MEXICO GOVERNOR SIGNS LATEST US LAW TO LEGALIZE ASSISTED SUICIDE AS ARKANSAS GOVENOR SIGNS THE “MEDICAL ETHICS AND DIVERSITY ACT”

On April 8, 2021, New Mexico became the latest and ninth state (along with Washington D.C.) to legalize “medically assisted suicide”.

Note the new terminology used is no longer called “physician-assisted suicide”. This is no accident but rather reflects the persistent expansion of assisted suicide law to allow even non-physicians like physician assistants and nurse practitioners to determine that a requesting patient has six months or less to live and provide them with the suicide drugs.

Ironically, Medicare benefit rules for certifying a terminal illness with a life expectancy of six months or less to be eligible for hospice states that “No one other than a medical doctor or doctor of osteopathy can certify or re-certify a terminal illness”. (Emphasis added) And having worked as a home hospice, ICU and oncology nurse, I know how difficult it is to predict when a patient is expected to die.

And, like other assisted suicide laws, New Mexico’s law also has unenforceable and easily circumvented “safeguards’ like mental health evaluations that are required for any other suicidal patient.

The law also requires that terminally ill patients has “a right to know” about all legal options including assisted suicide and that healthcare providers who refuse to participate in medically assisted suicide must refer that patient to another willing provider.

Nevertheless, New Mexico Gov. Michelle Grisham said she signed the law HB0047 to secure the “peace of mind and humanity this legislation provides.”

THE MEDICAL ETHICS AND DIVERSITY ACT

In a striking contrast to New Mexico’s assisted suicide law, Governor Asa Hutchison signed the “Medical Ethics and Diversity Act” just days earlier on Friday, March 26, 2021 which expanded conscience rights in the state.

As the statute eloquently states:

“The right of conscience is a fundamental and unalienable right.

“The right of conscience was central to the founding of the United States, has been deeply rooted in the history and tradition of the United States for centuries, and has been central to the practice of medicine through the Hippocratic oath for millennia … The swift pace of scientific advancement and the expansion, of medical capabilities, along with the notion that medical practitioners, healthcare institutions, and healthcare payers are mere public utilities, promise only to exacerbate the current crisis unless something is done to restore the importance of the right of conscience.

It is the public policy of this state to protect the right of conscience of medical practitioners, healthcare institutions, and healthcare payers. It is the purpose of this subchapter to protect all medical practitioners, healthcare institutions, and healthcare payers from discrimination, punishment, or retaliation as a result of any instance of conscientious medical objection.”

However, opponents of the law like the Human Rights Campaign and the American Civil Liberties Union, have argued that it would allow doctors to refuse to offer a host of services for LGBTQ patients.

In response to this criticism, Governor Hutchinson stated:

“I have signed into law SB289, the Medical Ethics and Diversity Act. I weighed this bill very carefully, and it should be noted that I opposed the bill in the 2017 legislative session. The bill was changed to ensure that the exercise of the right of conscience is limited to ‘conscience-based objections to a particular health care service.’ I support this right of conscience so long as emergency care is exempted and conscience objection cannot be used to deny general health service to any class of people. Most importantly, the federal laws that prohibit discrimination on the basis of race, sex, gender, and national origin continue to apply to the delivery of health care services.”

CONCLUSION

As a nurse myself, I would not and never have refused to care for any patient. Discrimination has no place in healthcare.

However, I have been threatened with termination when I have refused to follow an order that would cause a patient’s death. It wasn’t the patient I objected to but rather the action ordered.

Conversely, I would not want a healthcare provider caring for me who supports assisted suicide, abortion, etc. This is why I ask my doctors about their stands on such issues before I become their patient.

Our country and our healthcare systems need laws, healthcare providers and institutions that we can trust to protect us. Conscience rights protections are a critical necessity for that to happen.

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NEW MEXICO GOVERNOR SIGNS LATEST US LAW TO LEGALIZE ASSISTED SUICIDE AS ARKANSAS GOVENOR SIGNS THE “MEDICAL ETHICS AND DIVERSITY ACT”

On April 8, 2021, New Mexico became the latest and ninth state (along with Washington D.C.) to legalize “medically assisted suicide”.

Note the new terminology used is no longer called “physician-assisted suicide”. This is no accident but rather reflects the persistent expansion of assisted suicide law to allow even non-physicians like physician assistants and nurse practitioners to determine that a requesting patient has six months or less to live and provide them with the suicide drugs.

Ironically, Medicare benefit rules for certifying a terminal illness with a life expectancy of six months or less to be eligible for hospice states that “No one other than a medical doctor or doctor of osteopathy can certify or re-certify a terminal illness”. (Emphasis added) And having worked as a home hospice, ICU and oncology nurse, I know how difficult it is to predict when a patient is expected to die.

And, like other assisted suicide laws, New Mexico’s law also has unenforceable and easily circumvented “safeguards’ like mental health evaluations that are required for any other suicidal patient.

The law also requires that terminally ill patients has “a right to know” about all legal options including assisted suicide and that healthcare providers who refuse to participate in medically assisted suicide must refer that patient to another willing provider.

Nevertheless, New Mexico Gov. Michelle Grisham said she signed the law HB0047 to secure the “peace of mind and humanity this legislation provides.”

THE MEDICAL ETHICS AND DIVERSITY ACT

In a striking contrast to New Mexico’s assisted suicide law, Governor Asa Hutchison signed the “Medical Ethics and Diversity Act” just days earlier on Friday, March 26, 2021 which expanded conscience rights in the state.

As the statute eloquently states:

“The right of conscience is a fundamental and unalienable right.

“The right of conscience was central to the founding of the United States, has been deeply rooted in the history and tradition of the United States for centuries, and has been central to the practice of medicine through the Hippocratic oath for millennia … The swift pace of scientific advancement and the expansion, of medical capabilities, along with the notion that medical practitioners, healthcare institutions, and healthcare payers are mere public utilities, promise only to exacerbate the current crisis unless something is done to restore the importance of the right of conscience.

It is the public policy of this state to protect the right of conscience of medical practitioners, healthcare institutions, and healthcare payers. It is the purpose of this subchapter to protect all medical practitioners, healthcare institutions, and healthcare payers from discrimination, punishment, or retaliation as a result of any instance of conscientious medical objection.”

However, opponents of the law like the Human Rights Campaign and the American Civil Liberties Union, have argued that it would allow doctors to refuse to offer a host of services for LGBTQ patients.

In response to this criticism, Governor Hutchinson stated:

“I have signed into law SB289, the Medical Ethics and Diversity Act. I weighed this bill very carefully, and it should be noted that I opposed the bill in the 2017 legislative session. The bill was changed to ensure that the exercise of the right of conscience is limited to ‘conscience-based objections to a particular health care service.’ I support this right of conscience so long as emergency care is exempted and conscience objection cannot be used to deny general health service to any class of people. Most importantly, the federal laws that prohibit discrimination on the basis of race, sex, gender, and national origin continue to apply to the delivery of health care services.”

CONCLUSION

As a nurse myself, I would not and never have refused to care for any patient. Discrimination has no place in healthcare.

However, I have been threatened with termination when I have refused to follow an order that would cause a patient’s death. It wasn’t the patient I objected to but rather the action ordered.

Conversely, I would not want a healthcare provider caring for me who supports assisted suicide, abortion, etc. This is why I ask my doctors about their stands on such issues before I become their patient.

Our country and our healthcare systems need laws, healthcare providers and institutions that we can trust to protect us. Conscience rights protections are a critical necessity for that to happen.

Caring for an Elderly Relative who Wants to Die

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

CONCLUSION

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

.

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.

 

 

 

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.

 

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 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.

Can a POLST be Hazardous to Your Life?

First, we had the “living wills” developed in the 1970s by the Euthanasia Society US (later renamed the Society for the Right to Die) to allow people to states their wishes for or-most importantly-against certain medical treatments in case they become unable to communicate their decisions. By 1991, The Patient Self-Determination Act was passed and every health care facility was required to ask every patient if they had such a document.

Today, we have many types of such documents including the newest one called the “Physician Orders for Life-Sustaining Treatment” (POLST)  that was developed in Oregon (the first state to legalize physician-assisted suicide) in 1991.

A POLST is a short document that people can carry with them with checkoffs for CPR (cardiopulmonary resuscitation) and tube feedings. And if the person is still alive but unable to communicate, the POLST has checkoffs for whether the person wants “Comfort measures only”, “Limited Interventions” like antibiotics and IV fluids, or “Full treatment”.

Although efforts to pass a national POLST law have failed so far, many states have passed their own versions that lead to serious concerns.

Most recently, Illinois is now considering a POLST bill SB 3524 that amends and expands the previous Health Care Surrogate Act.

Among the changes in the Illinois bill are changing “qualified physician” to “qualified health care practitioner” which  “means an individual who has personally examined the patient and who is an Illinois licensed physician, advanced practice registered nurse, physician assistant, or licensed resident after completion of one year in a qualified graduate medical education program”. (Emphasis added)

The bill also removes the requirement of a witness to the signature of the person, legal guardian or health care surrogate on the POLST form. This is an important requirement to be reasonably certain that the POLST reflects the person’s wishes.

The bill  defines a person’s “qualifying conditions” for a POLST as “Terminal condition”, “Permanent unconsciousness”, or “Incurable or irreversible condition” (a definition that alarms many disability groups).

The bill also defines “Life-sustaining treatment” as “any medical treatment, procedure, or intervention that, in the judgment of the attending physician, when applied to a patient with a qualifying condition, would not be effective to remove the qualifying condition or would serve only to prolong the dying process“. (Emphasis added)

Also, the bill states that the health care provider acting on the POLST in “good faith” is not “subject to any criminal or civil liability, except for willful and wanton misconduct, and may not be found to have committed an act of unprofessional conduct.” (Emphasis added)

A February 16, 2020 editorial in the Journal of the American Medical Association titled “Physician Orders for Life-Sustaining Treatment and Limiting Overtreatment at the End of Life” had this chilling observation about physicians’ attitudes and POLSTs:

Even with the best of counseling, some patients will refuse any limitations of treatment—36% of the patients in the study by Lee et al1 had POLSTs that indicated “full treatment,” presumably including admission to the ICU, mechanical ventilation, and cardiopulmonary resuscitation, if necessary. While receipt of these therapies would be considered POLST-concordant care, clinicians sometimes object to providing care that they perceive will be unbeneficial or even harmful. These conflicts between clinicians and patients or their surrogates are a common problem in ICU care and are seen as a major contributor to distress and frustration among clinicians.” (Emphasis added)

CONCLUSION

A 2013 article “The Problem with POLST – Physician Orders for Life-Sustaining Treatment” succinctly describes the problems with POLST and what we should instead be striving for:

“POLST only makes sense in cases of patients with terminal illnesses, in end stage disease with no real options. By that point in time there are no therapeutic treatment decisions to be made. Yet, a patient who is under treatment who is living with a disease, there are alternative treatment decisions to be made. There are risks to weigh and an up to date informed consent required. It cannot be left up to a patient to research new literature and evidenced based medical standards.

POLST even precludes an assessment by a paramedic to make any decisions on overall survivability at the time of emergency care in the field. Surrogate decision makers are not consulted, advance health directives are not read or considered, and second opinions are not sought. Intelligent and experienced assessments are precluded by POLST. In cases of non-terminal patients POLST does not respect society’s moral mandate to respect life and instead treats life cavalierly by simply pinning a card on a person’s chest with life and death decisions of timely and clear origin.” (Emphasis added)

As a former hospice, oncology and ICU nurse, I wholeheartedly agree!