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Nancy Valko, RN ALNC

My Book Review on “Nurses and Midwives in Nazi Germany: The ‘Euthanasia Programs’”

“Nurses and Midwives in Nazi Germany-The ‘Euthanasia Programs’”
Edited by Susan Benedict and Linda Shields
Routledge Studies in Modern European History. London: Routledge 2014

My book review (abstract) was just published in the Linacre Quarterly journal. Here are some excerpts from my review with all emphasis added only for this blog.

In my nursing education during the 1960s, the Nazi euthanasia program was covered during a class but mainly as a ghastly aberration that was unthinkable today with our now strong ethical principles. As students, we were shocked and horrified by the revelation that nurses were integral to Nazi killing programs. We had little knowledge of the mechanisms that existed to encourage nurses to kill those patients whose lives were deemed “not worth living.”

Unfortunately, it is difficult these days to find information about nurses during the Nazi regime, even on the American Nurses Association website. Thus, the editors of this book do nurses and the public a great service by examining the little-known but crucial role of nurses in the Nazi euthanasia programs. Knowing this history is more important than ever as efforts to legalize assisted suicide and euthanasia continue to grow.

The authors explain the history, education, propaganda, and pressures that led so many nurses to participate in the killing of hundreds of thousands of helpless men, women, and children in the 1930s and 1940s; they also propose a model for teaching nursing ethics using the Nazi euthanasia program to encourage nursing students to examine ethical principles and their own values as a nurse in today’s health-care system.

……

The authors start with the rise of the influential eugenics movement in the early twentieth century in countries like the United States where the American Eugenics Society even held conferences on eugenics, such as the 1937 one which included the topic “The Relation of Eugenics to the Field of Nursing.” Eventually, the US eugenics movement fell out of favor after the Nazi euthanasia programs were discovered in World War II.

Even prior to World War II, German professional nursing publications discussed eugenics as “providing a scientific basis for the positive eugenics promoting reproduction among the healthy (often of northern European descent) middle to upper classes and negative eugenics encouraging limited reproduction and forced sterilization of the ‘unfit’ (who were often poor, uneducated, and more recent immigrants) as reasonable”.  Eugenic language was most prevalent in public health and psychiatric nursing texts and in discussions of poverty, immigrants, cleanliness, and social problems.

The editors also point to the influence on Adolf Hitler of the 1920 book titled Approval of the Extermination of Worthless Human Lives by Germans Karl Binding, a jurist, and Alfred Hoche, a psychiatrist. Binding and Hoche noted that there were no legal arguments preventing legalizing the killing of those whose lives were considered not worth living. (Emphasis added)

There was extensive propaganda aimed at increasing the acceptance of euthanasia by the public and health-care providers. Only a few months after Hitler seized power, the first law, affecting people diagnosed with psychiatric conditions, was passed. It mandated sterilization for people with hereditary disorders including alcoholism and epilepsy. Propaganda emphasized wastefulness of providing health care to the chronically mentally ill and the hereditary nature of undesirable physical, mental, and social traits.

Hitler did not propose the systematic killing of psychiatric patients during peacetime because he anticipated the opposition of the churches and the German people. The beginning of World War II muted moral objections and distracted the populace with concerns of conserving resources for the war effort and was the start of state-sponsored euthanasia. The first documented killing occurred in 1939 when Hitler granted the euthanasia request of a father whose son was born blind, missing a leg and part of an arm and who “seemed to be an idiot” .

In 1939, the German Ministry of Justice proposed two new clauses:

1.“Whoever is suffering from an incurable or terminal illness which is a major burden to himself or others can request mercy killing by a doctor, provided it is his express wish and has the approval of a specially empowered doctor.”

2. “The life of a person who, because of incurable mental illness, requires permanent institutionalization and is not able to sustain an independent existence may be prematurely terminated by medical measures in a painless and covert manner” . (Emphasis added)

The program started targeting those in asylums and the disabled in nursing homes for death by lethal gas, starvation, drugs, and neglect. The Jewish population was especially targeted regardless of health.

………

 

In 1933, Adolf Bartels, the deputy leader of the Reich’s medical profession, provided a blueprint of the future of nursing under the Nazis. He emphasized that German nurses in social and medical service had to meet standards in the new Reich that were very different from before. The new Reich not only wanted to look after the sick and weak but also wanted to secure a healthy development of all Germans “if their inherited biological predisposition allows for it” (p. 38). Above all, the new state wanted to secure and promote a genetically sound, valuable race, and, in contrast to the past, “not to expend an exaggerated effort on the care of genetically or racially inferior people”. (Emphasis added)

As a Nazi politician stated, “a nurse is the one who should carry out the will of the State in the health education of the people”. It was not necessary for the majority of nurses to become ardent supporters of the Nazi regime for them to do the will of the Reich. One source noted that the majority of nurses who participated in a secret euthanasia program known as T4 tried to remain good nurses; an estimated 10 percent or fewer were enthusiastic supporters of Nazi practice. But, as in other areas of public life, the Reich absorbed professional nursing organizations, leaving the nursing profession with no means of expressing opposing or dissenting views as well as no organizational support for refusing to participate. (Emphasis added)

……

 

Using midwives, the Reich took various measures both to prevent those regarded as having a “hereditary disease” or who were “racially inferior” from reproducing while increasing the birth rate of those considered valuable and healthy. Thus, the traditional midwife focus on the mother and child was changed to focus on the nation as a whole.

Midwives could initiate proceedings for forced sterilization, and it was now a duty for midwives to report to public health officers “deformed” births and small children with disabilities before their third birthday. Reports received from doctors and midwives were reviewed by medical examiners, and based solely on the reports, the examiners decided whether the child was to be killed or spared.

Parents with such children were told about institutions for children who needed special care that were being established through the country. They were persuaded to admit these children and were assured that the children would receive the best possible care. Parents could refuse but had to sign forms stating their responsibility to supervise and care for their children. The identified children in these institutions were killed by starvation or lethal injection. Parents were told that their children had died from natural causes.

……..

The world was riveted by the 1945 Hadamar trial, the first mass atrocity trial after the Nazi regime was defeated in World War II. This trial came before the infamous Nuremburg trials that included doctors. Hadamar was covered extensively by American media but ignored by the American Journal of Nursing even though nurses were charged.

The trial involved one of the largest and most important killing centers, Hadamar Psychiatric Hospital, one of the six institutions in Germany designated for killing the mentally ill. In 1943, a ward (called an “educational home”) was set up for mixed-race children with Jewish heritage within Hadamar. Completely healthy children were killed with lethal injections. The actual numbers are not known because employees were required to take an oath of secrecy. It is estimated that more than 13,000 patients were killed in 1941 and 1942, even before the ward was set up.

 

In the first Hadamar trial, Head Nurse Irmgard Huber was tried with six others for killing over 400 men, women, and children. Nurse Huber was charged with “obtaining the lethal drugs, being present when some of the fatal injections were given, and being present when the false death certificates were made out”. Two male nurses were charged with administering the lethal injections. All pleaded not guilty. Their defense was that they were powerless and had inadequate knowledge to judge the morality of their actions. All denied accountability. (Emphasis added)

Trial testimony confirmed that the nurses prepared patients for their deaths, directed the entire nursing staff of the institution, and were present at the daily conferences where the falsified death certificates were completed. Duties to patients were limited to so-called kindnesses that consisted of bringing small gifts to pediatric patients and taking care to prevent patients from knowing that they would soon be killed. Head Nurse Huber insisted that she wished to render a last service to these patients and did not want to do them any harm and that she had a clear conscience.

…….

The second Hadamar trial in 1947 did not receive the same attention as the first. Twenty-five members of the Hadamar staff were charged. At this trial, Head Nurse Huber was charged with killing 15,000 German mental patients. All but one of the defendants were found guilty and served sentences ranging from two and a half to five years. The one nurse found not guilty claimed she had feigned pregnancy in order to achieve release from the killing center. (Emphasis added)

In the end, Head Nurse Huber was released from prison in 1952; the others by 1954.

………

The book presents a model used for two innovative teaching programs about this subject, one in Israel and one in Australia, perhaps the most important contribution of this book. The editors believe that the Nazi era should be taught to students, “highlighting the danger of failing to see each individual as a valuable member of human society. And while the heart of nursing and midwifery continues to be care and caring practices, it is fundamental for students to confront this history to develop insights into the causes and social constructs that enabled nurses and midwives to distort the goal of nursing practice and theory to harm and murder patients.”

The results of these programs and the responses by students appear encouraging. The editors hope that by raising these issues, students will be forced to confront their own values and beliefs, sometimes an intensely uncomfortable experience. They also believe students who are exposed to this “dark element of nursing and midwifery history” will be better prepared to face pressure or to report and oppose violations of the trust that is central to any relationship between nurses and patients

 

CONCLUSION

Decades after the Nazi atrocities, we are seeing a resurgence of the same “life unworthy of life” justification that drove Nazi eugenics. We see how this perspective increasingly approves the deliberate termination of some lives as “merciful” and “humane.” There is an emerging, shocking consensus that we can—or perhaps even should—choose to have our own lives terminated when our lives are considered not worth living either by ourselves or by others if we cannot speak for ourselves.

The authors of this book make it clear: we all need to know and understand the past in order not to repeat it. Hopefully, it is not too late to turn the tide of history back toward respect for all life.

 

 

Whatever Happened to Common Sense at the End of Life?

In 2007, I wrote an article titled “Whatever Happened to Common Sense at the End of Life?” for Voices magazine. I wrote about real life situations that people and their families faced along with the principles involved. I am reprising that article here in response to the many questions I receive about dealing with such difficult situations.

Unfortunately since I wrote this article, the situations people and their families face have become worse: More states have legalized assisted suicide and have expanded the definition of “terminal”,  more parents of babies with disabilities are fighting for their  right to treatment , voluntary stopping of eating and drinking (VSED) is promoted as a legal way to kill oneself, etc.

I have and will continue to write on these newer issues but the basic principles are still valid.

Whatever Happened to Common Sense at the End of Life?

Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.

But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.

Here are just four examples:

Prolonging Death or Providing Comfort?

I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.

“Why, that’s just common sense!” the daughter exclaimed. Exactly!

Mary soon peacefully died at home with her family, never needing another medical intervention.

Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.

After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.

What if an Elderly Person Doesn’t Want Treatment?

One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.

Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed. (She lived comfortably several more years.)

Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.

For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.

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 or reasonable options are presented as just a yes or no choice. 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.

Shouldn’t We Be Allowed to Die?

Years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, Rose, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with this even though the rest of the family was ready to go along with the doctors.

As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.

About six weeks after the initial phone call, my friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.

“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”

Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.

Isn’t It Compassionate to Support a Person’s Right to Die?

When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.

Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.

As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.

Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.

However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.

The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.

A Time to Live, a Time to Die

When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.

Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.

The “right to die” movement is really about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.

It’s just common sense.

From “Choice” To “No Choice”-Lessons from the Baby Alfie Evans Case

Defending the UK High Court’s order allowing Alder Hay Children’s Hospital to withdraw life support from Baby Alfie Evans and refusing to even allow his parents to take him home, Dr. Ranj Singh of the UK National Health Service was quoted: “This is not the killing of a child – this is redirecting care to make them more comfortable.

Although this callous statement suggests an economic motive, I believe the real problem is a fundamental shift in legal and medical ethics that started in the US in 1976 with the Karen Quinlan case.

Karen was a 21 year old woman whose parents wanted to remove her ventilator after she did not wake up after losing consciousness after a party. The doctors disagreed but the California Supreme Court upheld parents’ decision by stating:

“No compelling interest of the state could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient state,” then-Chief Justice Richard Hughes wrote. (Emphasis added)

Ironically, Karen did not stop breathing and lived 9 more years with a feeding tube and basic care. But Karen’s case set the stage for the so-called “right to die” movement, “living wills” with removal of feedings and eventually the current assisted suicide/euthanasia movement.

Unfortunately, Baby Alfie and his parents are just the latest casualties of an emerging legal/medical/popular mindset that some people are better off dead. To make matters worse, Baby Alfie’s case-like the similar Baby Charlie Gard case  in the UK last year-are perhaps intended to become examples to discourage other parents (or families) from challenging doctors, hospitals and courts on mandatory withdrawal of treatment decisions.

WHAT HAPPENED TO BABY ALFIE AND COULD THIS HAPPEN HERE IN THE US?

Baby Alfie Evans was born in the UK on May 9, 2016 and apparently healthy. His parents became concerned when he missed the developmental milestones that most babies achieve in their first 7 months and started making “jerking, seizure-life movements”.

In December 2016, he caught a chest infection that caused seizures and was placed on a ventilator at Alder Hey Children’s Hospital. Despite the doctors’ dire predictions, Alfie started breathing on his own but caught another chest infection and seizures and went back on a ventilator.

Without having a definitive diagnosis after a year and Baby Alfie in what his doctors called a “semi-vegetative” state, the hospital and doctors wanted to remove his ventilator but Alfie’s parents fought back.

The hospital took the case to the British High Court, stating that “further treatment” for Alfie was “not in his best interests” as well as “unkind and inhumane”.

After many failed court appeals by the parents and even help from Pope Francis and an Italian hospital ready to take the baby, the hospital remained intractable and Alfie was not even allowed to go home with his parents. The ventilator was removed but, contrary to the doctors’ predictions, Alfie continued to breathe on his own for five more days before finally dying.

I watched the tragedy of Baby Alfie from afar with a lot of alarm as well as personal sadness.

I first became aware of medical discrimination against babies with mental disabilities in 1982 with the Baby Doe case. Baby Doe was born with Down Syndrome and a correctable congenital defect in his throat that makes eating food orally impossible but his parents refused surgery on the advice of the obstetrician but against the recommendations of two other doctors who advised immediate surgery. The case went to court but the judge ruled in favor of his parents. The parents also refused all offers of adoption. Baby Doe died from starvation and dehydration while lawyers were still appealing his case. Tragically, Baby Doe did not even receive simple intravenous fluids to keep him alive until his appeals were finished. Many of us who spoke out about Baby Doe’s right to treatment were accused of being “mean” to his parents.

When my daughter Karen was born just after Baby Doe died and also with Down Syndrome as well as a treatable heart defect, I was offered the “choice” of refusing heart surgery for her and “letting” her die. However, even after I insisted on the surgery, I found out that one doctor made her a Do Not Resuscitate behind my back and I was told by others-even other health care professionals like myself-things like “People like you shouldn’t be saddled with a child like that!”

I became so fearful that at one point I slept on the floor under my daughter’s crib during an overnight hospitalization for a test.

It was devastating when Karen died from sudden complications of pneumonia at 5 ½ months but I will never regret fighting for her right to be treated the same as other children with her heart defect.

With Baby Simon Crosier who was born with Trisomy 18 and a heart defect in 2010, his parents begged for help when Simon started deteriorating without knowing that the hospital had made their baby a Do Not Resuscitate and was being given only “comfort feeds” due to a secret futility policy. They had to helplessly watch as Simon died in their arms. The later Simon’s Law bill they helped write to prevent other outrageous secret futility guidelines in hospitals continues to sit in a Missouri legislative committee but hopefully it will get to the House floor this session. (Simon’s Law was passed in Kansas in 2017.)

PARENTAL DECISION-MAKING

The usual standard for parental decision-making in the US has been:

“Medical caretakers have an ethical and legal duty to advocate for the best interests of the child when parental decisions are potentially dangerous to the child’s health, imprudent, neglectful, or abusive. As a general rule, medical caretakers and others should challenge parental decisions when those decisions place the child at significant risk of serious harm. ” (Emphasis added)

But, after Baby Doe starved to death, medical groups fought the proposed Baby Doe Regulations intended to protect such children with disabilities as too restrictive. For example, the American Medical Association endorsed the quality of life standard prior to the Baby Doe case :

“In the making of decisions for the treatment of seriously deformed newborns or persons who are severely deteriorated victims of injury, illness, or advanced age, quality of life is a factor to be considered in determining what is best for the individual.

In caring for defective infants the advice and judgment of the physician should be readily available, but the decision as to whether to treat a severely defective infant and exert maximal efforts to sustain life should be the choice of the parents.” (Emphasis added)

But at a pediatric ethics conference in 1994, I was shocked by a workshop where the  focus was on how to convince parents to refuse or withdraw treatment from seriously disabled or dying children. One speaker/lawyer was even applauded when he suggested that parents who refused to withdraw treatment like feeding tubes from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. He also said that judges would be most likely to side with the doctors and/or ethics committee if such cases went to court.

Over the years and unknown to most of the public, many ethicists still refuse to concede this “choice” of a right to continue treatment and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care to patients of any age. This theory evolved into “futile care” policies at hospitals in Houston, Des Moines, California and other areas. Even Catholic hospitals have been involved.

And now, as Baby Simon’s parents and I have unfortunately found, such decisions are sometimes made without even notifying us. This must change with not only legislation like Simon’s Law but also a change of attitude towards these little ones.

CONCLUSION

While there are situations where a family or patient might unreasonably demand truly medically futile or unduly burdensome treatment, the decision to deliberately end the life of a person because he or she is deemed to have little or no “quality of life” should never be made.

The terrible ordeal that Baby Alfie and his parents went through sparked tremendous outrage around the world, especially the callous treatment of his obviously loving parents.

This was inhuman, not “humane” and we must continue the fight to demand truly ethical, caring and nondiscriminatory healthcare, especially for the youngest among us.

 

You Don’t Want to be a Burden, Do You?

An April 13, 2018 USA Today op-ed titled “Make an End-of-life plan or Lose your Money and Choices in your Dying Days” by Hattie Bryant begins with the statement “End-of-life care can bankrupt your family and rob you of choices. End the denial about dying. Make a plan in case you end up seriously ill and frail.” (Emphasis added)

Ms. Bryant is very upfront about using the economic argument about aging and the enormous toll it can take financially and personally on the family as well as medical costs. She states that “in 2011, Medicare spent $554 billion and 28%, or about $170 billion, on patients’ last six months of life. After $170 billion is spent, those patients are still dead.”

Her solution is a new kind of economic advance directive she developed (and is selling as a book titled “I’ll Have It My Way: Taking Control of End-of-Life Decisions“ ) “that deals with how you want your funds spent when you are seriously ill or frail.” (All emphasis added)

SHOULD WE HAVE A “DUTY TO DIE”?

Back in 1984, Governor Richard Lamm of Colorado found himself in the middle of a firestorm of outrage when, as the New York Times reported, “Governor Lamm Asserts Elderly, If Very Ill, Have a ‘Duty to Die”.

Here is an excerpt from the article:

Elderly people who are terminally ill have a ”duty to die and get out of the way” instead of trying to prolong their lives by artificial means, Gov. Richard D. Lamm of Colorado said Tuesday.

People who die without having life artificially extended are similar to ”leaves falling off a tree and forming humus for the other plants to grow up,” the Governor told a meeting of the Colorado Health Lawyers Association at St. Joseph’s Hospital.

”You’ve got a duty to die and get out of the way,” said the 48-year-old Governor. ”Let the other society, our kids, build a reasonable life.”

This philosophy was echoed in 2014 by one of the architects of Obamacare, Dr. Ezekiel J. Emanuel, when he wrote “Why I Hope to Die at 75-An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly” for The Atlantic Magazine.

At age 57 at the time, Dr. Emanuel states that while death is a loss, there “is a simple truth that many of us seem to resist: living too long is also a loss” that “renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.” (Emphasis added)

He states that he will stop trying to prolong his own life by age 75.

CONCLUSION

Helping to care for many terminally ill or seriously disabled relatives, friends and patients of all ages for many decades both professionally and personally, I have a different perspective.

We are all born dependent on others for care and many of us need at least some help from others at the end of our lives. This can be hard at times-as even parents of newborns will attest-but the rewards are great both for the helper and the person being helped.

I remember when my mother with Alzheimer’s and terminal thyroid cancer was dying in 1988. It wasn’t the most convenient time for us, to say the least. I was a suddenly single parent with three young children and financially struggling.  My mother no longer recognized me but, as I told a friend, the most important issue was that I recognized her.  As a family, we did what was medically reasonable for my mother to help her without either prolonging or hastening her dying.

Taking care of my mother was a wonderful, if occasionally difficult, experience and I am grateful that we were able to keep her at home almost to the very end.

The final result was that my mother was kept  safe, comfortable and loved. Her funeral was truly a celebration of her life and my children learned an important lesson about the circle of life and taking care of each other. We still talk fondly about their time helping with grandma, even after 30 years.

When I made out my own advance directive, I made sure that it was as protective as possible against a hastened death. I don’t fear death. I do fear the bioethicists  and others who use economics and fear to push especially older people into prematurely signing away their rights to even basic care and what this does to our society.

Conscientious Objection and the Duty to Refer

When the Trump administration announced a new department of Conscience and Religious Freedom, the pushback from abortion and assisted suicide proponents like Planned Parenthood and Compassion and Choices was immediate and accompanied by apocalyptic predictions of harm to patients.

Now the term “conscientious objection” is increasingly being used rather than “conscience rights” when it comes to health care professionals. I believe this is not accidental. The term “conscience rights” is a powerful and accepted term about individual rights while “conscientious objection” is associated with the traditional definition of  “A person who refuses to serve in the military due to religious or strong philosophical views against war or killing” and who “may be required to perform some nonviolent work like driving an ambulance.” (Emphasis added)

Nevertheless, in a March 30, 2018 Medscape (password protected) article titled “Should Clinicians With Conscientious Objections Be Protected?”, well-known ethicist Arthur L. Caplan, PhD criticizes the new Conscience and Religious Freedom Division as an expensive “overreaction” that can be mediated by allowing health care professionals to refuse to provide a legal act (like abortion or assisted suicide in certain areas NV) but requiring them “to tell patients where they can go and how they can go about getting it.”

This echoes last year’s New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” by Dr. Ezekiel Emanuel (one of the architects of Obamacare) and Ronit Y. Stahl, PhD. who insist that medical professionals “cannot completely absent themselves from providing these services” and are still required to convey “accurate information” and provide “timely referrals to ensure patients receive care.”

The authors even state that:

“Health care professionals who are unwilling to accept these limits have two choices: select an area of medicine, such as radiology, that will not put them in situations that conflict with their personal morality or, if there is no such area, leave the profession. “ (Emphasis added)

Their rationale for this extreme position is that “the patient comes first, which means the patient’s conscience and autonomy receive priority over those of the physician.”  (Emphasis added)

However, this could now conflict with the recently amended federal Affordable Care Act (aka Obamacare) that states:

 “No qualified health plan offered through an Exchange may discriminate against any individual health care provider or health care facility because of its unwillingness to provide, pay for, provide coverage of, or refer for abortions.”

and

“The Federal Government, and any State or local government or health care provider that receives Federal financial assistance under this Act (or under an amendment made by this Act) or any health plan created under this Act (or under an amendment made by this Act), may not subject an individual or institutional health care entity to discrimination on the basis that the entity does not provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.” (All emphasis added)

THE DUTY TO “CONVEY ACCURATE INFORMATION” AND “REFER”

Ironically, do groups like Planned Parenthood and Compassion & Choices really want to require a medical professional opposed to abortion and/or assisted suicide to convey accurate information?

First of all, medical referrals require a measure of trust. For example, no doctor or nurse would knowingly refer a patient to another doctor or organization that he/ she considers incompetent or unethical or for a procedure the medical professional considers harmful to the patient. When a patient asks for procedures like abortion or assisted suicide, the medical professional should be free to refer the patient to support services like crisis pregnancy centers, etc. or to an ethical palliative care specialist, mental health expert, etc. The medical professional should also be free to convey accurate information regarding abortion such as  how abortions are performed, potential physical and emotional complications, fetal development, etc.  With assisted suicide, the medical professional should be free to discuss such issues as the potential complications of a lethal overdose, the potential effects on family and friends, the criminal/ civil immunity of the assisted suicide doctor if the assisted suicide goes awry, etc.

Medical professionals should also have the right to be honest and tell patients if they personally don’t know any doctor or organization that they would recommend to provide a referral for abortion or assisted suicide.

Patients, especially those in distress, need a well-informed medical professional who really listens to their concerns and responds with facts and helpful options rather than one who just hands out a “politically correct” referral.

CONCLUSION

The so-called duty to perform/participate in a life-ending procedure or refer for one is not really about conscience rights but rather another way to extinguish resistance to abortion and assisted suicide, normalize such procedures into standard medical practice and discourage/bully ethical health care professionals into leaving or never entering the medical professions.

Those of us who believe in medical ethics as, first and foremost, doing no harm to patients must actively fight this for the sake of our professions and for the safety of the public that puts their lives in our hands.

If we don’t speak up for our medical professions and our patients, who will?

 

The Opioid Crisis and Suicide

Statistics show that more than 115 Americans a day die after overdosing on opioids. Opioids  are a class of drugs that include both illegal drugs like heroin and legal prescription pain relievers such as codeine and morphine.

We are told that we have an opioid crisis that needs immediate solutions such as suing drug manufacturers, spending more on drug treatment centers, making drugs like Narcan more available to reverse the overdose if given in time, prescribing few-in any-opioids after surgery, adding more drug education in schools, etc.

Some of these ideas are worthy but are we missing a big existential part of the problem?

In a recent Kaiser Health News article asking  “How Many Opioid Overdoses are Suicides?”, reporter Martha Bebinger relates a heartbreaking interview with a young drug addict:

“She wanted to be dead, she said, glancing down, a wisp of straight brown hair slipping from behind an ear across her thin face.

At that point, said Ohlman, she’d been addicted to opioids — controlled by the drugs — for more than three years.

“And doing all these things you don’t want to do that are horrible — you know, selling my body, stealing from my mom, sleeping in my car,” Ohlman said. “How could I not be suicidal?…You realize getting clean would be a lot of work,” Ohlman said, her voice rising. “And you realize dying would be a lot less painful. You also feel like you’ll be doing everyone else a favor if you die.”” (Emphasis added)

Having had a daughter with drug addiction and relapses for 16 years who finally succumbed to suicide in 2009 using a horrific assisted suicide technique, I recognize the same pain this young woman expresses. I also know the frustration and fears of families and friends desperate to help.

The Kaiser article goes on to quote Dr. Maria Oquendo, immediate past president of the American Psychiatric Association, who said that “[Based on the literature that’s available], it looks like it’s anywhere between 25 and 45 percent of deaths by overdose that may be actual suicides,” *(Emphasis added).

The article also quotes a pair of distinguished economists who say that “opioid overdoses, suicides and diseases related to alcoholism are all often ‘deaths of despair’” caused by “underlying deep malaise”. (Emphasis added)

We have both a suicide and a drug crisis that often overlap due to an overwhelming sense of hopelessness and helplessness.

EXAMINING THE SCOPE OF THE PROBLEM

As psychiatrist Dr. Oquendo notes in a related article, US suicide rates were declining until they “abruptly stopped in1999” and now have increased 25%, especially among adolescent girls.

Now, there are about 123 reported suicides per day in the US  but the real figure may be as high as 3 to 5 times that number because many suicides go unreported as suicide  because of reasons like the stigma of suicide and the difficulty in determining intent.

Additionally, nearly half of US adults have a close friend or family member with a current or past drug addiction.

We have more drug treatment centers and suicide prevention programs than ever (with unfortunately varying levels of quality and allowed family involvement) but the problems continue to persist and even worsen.

CONCLUSION

What has happened in the US since suicide rates started rising two decades ago and drug abuse has surged?

First, we must recognize that American culture, law and politics changed radically in the last two decades and this has drastically affected all of us, especially our young people. For example, the legalization and glamorization of assisted suicide and mind altering drugs like recreational marijuana have not helped anyone want to embrace personal responsibility and caring for others as worthy goals.

We also now have a culture where religious values are often derided as judgmental and even harmful to social progress. Obscene language and violent, hypersexualized entertainment is applauded as liberating rather than offensive. Having children is portrayed as more of a potential economic, professional and personal burden rather than a joyful manifestation of love, commitment and family.

We owe our society and especially our young people a more hopeful, less selfish view of life rather than just the pursuit of  money, fame and pleasure.

Without a strong foundation of love, strong ethics and ideals, the resilience required to weather both the ups and downs of life without drugs or succumbing to suicide can be lost.

As much as we need good, affordable suicide and drug treatment programs, we adults also need to be examples of a truly “good life” and step up to fight the dangerous influences  that are killing our young people.

And we must never give up!

What You Need to Know About Medical Abortion and Abortion Reversal

This month Governor Butch Otter signed a law making Idaho the fifth state to mandate that women getting a medical (drug-induced) abortion be told that the abortion may possibly be stopped after the first dose if the woman changes her mind about having the abortion. This abortion reversal process  involves taking the hormone progesterone to counteract the first abortion drug mifepristone and before taking the second drug misoprostol 36-72 hours later that causes expulsion of the unborn baby. There is now a website at www.abortionpillreversal.com for information on abortion reversal that includes a hotline phone number at 1-877-558-0333.

The first abortion reversal  was performed by Dr. Matthew Harrison in 2007 and by 2015, he claimed that more than 213 babies had been saved. Although not always successful, abortion reversal has resulted in hundreds more babies alive today. Last December, the California Board of Registered Nursing finally notified Heartbeat International that it can now grant continuing education units (CEUs) to nurses who study the life-saving process known as Abortion Pill Reversal.

Planned Parenthood and other abortion groups are not pleased.

As I wrote in my February 16, 2017 blog “Are Mail Order Abortions Coming?” , medical abortions rates now rival surgical abortion rates while abortion clinics are closing at a record pace because of factors like “economic difficulties”, “a generally hostile atmosphere and declining demand”. Thus, the medical abortion procedure has become more appealing to groups like Planned Parenthood and now there are even efforts to provide more medical abortions by telemedicine even though a 2014 study found more complications with medical abortions than surgical ones.

THE PROMOTION AND CHANGING CRITERIA FOR MEDICAL ABORTION

In a disturbing March 27, 2018 Medscape article Medical Abortion in Very Early Pregnancy” (password protected),  Peter Kovacs, MD, PhD touts a study that allegedly shows medical abortion is now safe even “as soon as early pregnancy is diagnosed” and even before an ultrasound can show if the unborn baby is developing outside the womb. This abnormality is called an ectopic pregnancy and, if not detected early, can result in life-threatening complications and surgery.  Ectopic pregnancy occurs in 1-2% of  all pregnancies.

But as even Dr. Kovacs admits:

“Under well-controlled conditions using sedation and appropriate pain control, surgical termination of pregnancy is associated with minimal bleeding or pain. However, it can be associated with surgical complications (trauma, heavier bleeding, infection), which can lead to further interventions.

Medical abortion can be more painful because the products of conception have to be expelled from the uterus, and it is accompanied by prolonged bleeding. Still, medical abortion obviates surgical complications and is significantly cheaper.” (Emphasis added)

He recommends  “(A)propriate patient selection (no increased risk for or symptoms of ectopic pregnancy, appropriate follow-up to confirm successful abortion, patient compliance)” as obviously important. (Emphasis added)

CONCLUSION

Planned Parenthood tells women that having a medical abortion (at home, of course) is just “kind of like having a really heavy, crampy period” with large clots and that “(a)ny chills, fevers, or nausea you have should go away pretty quickly”.

And that:

“People can have a range of emotions after having an abortion. Most people feel relief, but sometimes people feel sad or regretful. This is totally normal. If your mood keeps you from doing the things you usually do each day, call your doctor or nurse for help” along with numbers to call for “free, confidential, and non-judgmental emotional support after an abortion.” (Emphasis added)

But two things Planned Parenthood does not tell women about is medical abortion reversal and the availability of real assistance with a problematic pregnancy including crisis pregnancy centers that now outnumber abortion clinics in the US.

Women need-and have a right-to know about both these alternatives.  It’s up to all of us to make sure as many women as possible know this.

Should Nurses or Other Non-Physicians Be Allowed to Perform Abortions?

When abortion was legalized in the 1973 Roe v Wade decision, we were told that abortion should be a private decision between a woman and her doctor.

Now there is a lawsuit by Planned Parenthood and the American Civil Liberties Union to force the state of Maine to allow abortions by non-physicians such as nurses and midwives.

Why? Although Planned Parenthood and the ACLU claim that this is about the safety of first-trimester abortion and the lack of enough accessible abortion clinics as well as “threats of violence”, the truth is that it is getting harder and harder to find doctors willing to do abortions.

This new expansion of abortion is part of a larger movement to remove restrictions on abortion. According to the liberal Public Leadership Institute, already “California, Montana, New Hampshire, Oregon and Vermont allow trained and licensed APCs (advance practice clinicians like nurses and physician assistants) to perform aspiration abortions.”

The Institute even provides model legislation for states called the ““Qualified Providers of Abortion Act” and cites the American College of Obstetricians and Gynecologists as recommending “expanding the pool of non-obstetrician/gynecologist abortion providers by training advanced-practice clinicians (APCs)—nurse practitioners, certified nurse-midwives and physician assistants—to perform aspiration (aka suction or vacuum) abortions.”

 ABORTION AND SAFETY

The source cited for the claim of safety for non-physician abortions is a new National Academies of Sciences, Engineering and Medicine report, “The Safety and Quality of Abortion Care in the United States.”

This report cites a 2013 study “Safety of Aspiration Abortion Performed by Nurse Practitioners, Certified Nurse Midwifes, and Physician Assistants Under a California Legal Waiver”  that dismissed the result of twice the number of complications for the non-physicians vs physicians as not “clinically relevant”.

But finding any true statistics on complications of abortion (including death) is already virtually impossible because according to the national Centers for Disease Control (CDC)  “states and areas voluntarily report data to CDC for inclusion in its annual Abortion Surveillance Report. CDC’s Division of Reproductive Health prepares surveillance reports as data become available. There is no national requirement for data submission or reporting.” (Emphasis added)

In addition, abortion clinic health inspections are often lax or ignored. As the Washington Free Beacon reported last October, according to the 2016 “Unsafe-How the Public Health Crisis in America’s Abortion Clinics Endangers Women report from the pro-life advocacy group Americans United for Life, “between 2008 and 2016, 227 abortion clinics were cited for over 1,400 health and safety deficiencies.”

According to Arina Grossu, a bioethicist and the director of the Center for Human Dignity at the Family Research Council, “Restaurants and tanning salons and vet clinics, they’re all more closely regulated than the abortion industry.”

This, of course, does not take into account the physical, spiritual and emotional toll of abortion on women that I have seen both personally and professionally.

CONCLUSION

In the 2016 US Supreme Court’s Whole Women’s Health v. Hellerstadt at decision held that:

“Two provisions in a Texas law – requiring physicians who perform abortions to have admitting privileges at a nearby hospital and requiring abortion clinics in the state to have facilities comparable to an ambulatory surgical center – place a substantial obstacle in the path of women seeking an abortion, constitute an undue burden on abortion access, and therefore violate the Constitution.”

Abortion supporters cheered and are now emboldened to go farther in their quest for tax-payer funded abortion on demand without restrictions.

But all is not lost.

The number of abortions is declining and there are now more crisis pregnancy centers than abortion clinics.  and more lives are being saved. Programs like Project Rachel are helping even more women and men suffering from the tremendous psychological damage caused by abortion.

Most women are choosing life after viewing an ultrasound of their baby and more  people are opposing taxpayer funding of groups like Planned Parenthood, especially after the scandal of selling aborted babies’ body parts.

But most importantly, we must keep working towards a society that once again views abortion as unthinkable.

Assassins, Not Doctors

Last year, both Hawaii and New Zealand physician-assisted suicide bills were defeated but, much like zombies, both bills were changed and resurrected for 2018.

As I wrote in a  previous blog about Hawaii’s bill, there are concerted efforts not only to pass but also expand assisted suicide laws. This bill is currently awaiting either passage or defeat in the Hawaii legislature’s Senate.

Recently, I submitted testimony on the “End of Life Choice Bill” to legalize physician-assisted suicide in New Zealand. Currently, the bill is being considered in the Select Committee.

The New Zealand bill is different from Hawaii’s in significant ways. Here are some of the differences, with emphasis added:

-It adds “grievous and irremediable medical condition in an advanced state of irreversible decline in capability”  to the usual condition of terminal illness.

-It give patients the option of 4 ways to kill themselves or be killed, including lethal injections:

(i) ingestion, triggered by the person:
(ii) intravenous delivery, triggered by the person:
(iii) ingestion through a tube:
(iv) injection

-“The attending medical practitioner must be available to the person until the person dies; or arrange for another medical practitioner to be available to the person until the person dies” by being “in the same room”  or “in close proximity to the person”.

-Conscience rights: If doctors refuse to provide the lethal overdose, they must refer to a SCENZ group established by the Director General to “make and maintain a list of medical practitioners who are willing to act for the purposes of this Act as—replacement medical practitioners: independent medical practitioners”,  list of pharmacists, and “to prepare standards of care; and to advise on the required medical and legal procedures; and to provide practical assistance, if assistance is requested.”

-The assisted suicide death (whose official cause is listed “as if assisted dying had not been provided”) must be reported within 14 days and sent to registrar who must send the report to a Review committee consisting of a medical ethicist and a medical practitioner who practices in area of end of life care and another medical practitioner. The Review committee has these functions: “to consider reports sent to it”, “to report about its satisfaction or otherwise with the cases reported” and “to recommend actions that the registrar may take to follow up with which the review committee was not satisfied.”

-Regular reports will be issued every five years after the first to be done 3 years after the law is implemented. These reports go to the minister and Parliament.

WHY DOES NEW ZEALAND “NEED” PHYSICIAN-ASSISTED SUICIDE?

While citing “strong public support” and “compassion” as motivating this physician-assisted suicide law in the explanatory note at the beginning of the New Zealand bill, the authors also cite cases in New Zealand where “the courts are treating the family members who have assisted their loved ones to die at their request with increasing leniency and compassion.” (Emphasis added)

This, they say “demonstrates further issues with the current state of our law, under which it is becoming permissible, in effect, for family members to assist loved ones to take their own lives. This is clearly less ideal, less clear, and considerably more risky than a regulated process in which medical practitioners can, in limited circumstances, assist those who are suffering.” (Emphasis added)

CONCLUSION

This last statement shows how lethally corrupting assisted suicide is: New Zealand must legalize physician-assisted suicide to spare family members while requiring participating doctors to even administer lethal injections at the sick person’s request and stay until he or she dies?

This turn participating doctors into assassins, not medical professionals.

Very few people enter the health care professions ready to kill some patients or help them kill themselves and dispassionately watch them die. But if physician-assisted suicide becomes law in New Zealand, health care professionals and even society itself will be forced to adjust to the new reality.

As I wrote in my testimony on New Zealand’s bill:

“Do assisted suicide supporters really expect doctors and nurses to be able to assist the suicide of one patient, then go on to care for a similar patient who wants to live, without this having an effect on their ethics or empathy? Do they realize that this can reduce the second patient’s will-to-live request to a mere personal whim – perhaps, ultimately, one that society will see as selfish and too costly? How does this serve optimal health care, let alone the integrity of doctors and nurses who have to face the fact that they personally helped other human beings kill themselves? (Emphasis added)

Conclusion

Medically assisted suicide is a dangerous proposition that has proven to be impossible to strictly limit, corrupts the essential element of trust in the health care system and makes suicide more attractive to vulnerable people as a way to solve life’s problems.”

 

“Living Wills” to Prevent Spoon-feeding

As so-called “safeguards” for physician-assisted suicide are now starting to be eliminated (See my recent blog “Legal Safeguards, Burdensome Obstacles and Conscience Rights”) , the predicted advance directive (aka “living will”)- already biased against tube feedings-is now on track to include even spoon-feedings.

In an article in Today’s Geriatric Medicine “Judicious Feeding Options at the End of Life” , writer Mike Bassett writes that “In some states, patients can sign directives that allow refusal of feeding when the end of life approaches” and relates the 2013 case of an 82- year-old Alzheimer’s patient whose family filed a lawsuit against a British Columbia nursing home to force the home to stop spoon-feeding her. The lawsuit failed in court but now End of Life Washington , a pro-assisted suicide group, has devised a document called “”My Instructions for Oral Feeding and Drinking”. The document is similar to an advance directive but addresses the signer’s wishes about when to stop oral food and drink in “late-stage” dementia.

Although such a document can be signed, witnessed and notarized, it is not a binding legal document. But this sets the stage for a legal challenge like the British Columbia case but with assisted suicide groups hoping for a different judgment.

The article also interviewed the vice president of constituent services for the Alzheimer’s Association who said that when to stop even oral feeding “should be an important consideration for anyone issuing end-of-life instructions.”

Stephen Drake of the disability advocacy group “Not Dead Yet” made strong points about the dangers of this scheme both in the article and his blog ’End of Life Washington’ Promotes Directive to Prevent Feeding Assistance to Those with Dementia”.

I am not surprised by this new development and here is an excerpt from my September 5, 2016 blog “Ethics and Alzheimer’s-Part Two”:

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an op-ed on the Cruzan case titled “Feeding is not Extraordinary Care” and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that:

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

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic  medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer’s Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by  vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality  of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.