Month: May 2018

Don’t Write Off The Elderly

nancyvalko assisted suicide, culture, family, law, medical ethics

Late last year, my 95 year old friend I will call “Melissa” fell and fractured her hip which is especially serious at her age. In one study of people over 65 who fractured a hip, up to 50% died in 6 months with the highest mortality rates found in people over 90 years old.

In Melissa’s case, she also had long-term chronic congestive heart failure when she fell in her bathroom at home. She underwent successful surgery and was sent to a rehab facility where she developed a blood clot that went to her lungs. After successful treatment of that complication, she later developed a life-threatening pneumonia after returning to the rehab facility. She had difficulty breathing even with 100% oxygen by mask and 911 was called. I was with her when the ambulance arrived and I followed it to the hospital.

In the Emergency Room, the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doctor was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was not able to speak for herself and that Melissa’s son and I were her decision makers. Thanks to our smartphones, Melissa’s daughter and I were in constant phone contact during that time.

After a few weeks in the hospital, Melissa astonished the doctors by recovering with antibiotics and a temporary BiPap (a face mask machine to support her breathing) until the antibiotics took hold. Then, after another short stint in a facility, my friend was finally able to go home with outpatient rehab and help from family and friends.

Going home was Melissa’s first goal.

This week, she accomplished the second of her goals: returning to Friday Mass and breakfast at Chick-Fil-A for her weekly outing with friends again. Her last goal is to celebrate at her 96th birthday party in August and none of us would bet against her achieving that also.

Elder Bias

In a society that seems to almost venerate youth and material success, those of us who are older can be made to feel useless and even a burden.

That can be fatal.

For example and just this month, 104 year old Australian scientist David Goodall who had no terminal illness traveled to Switzerland for physician-assisted suicide and to actively promote it.

According to USA Today, he said that:

“My abilities and eyesight are declining, and I no longer want to live this way...I hope something positive will come out of my story and that other countries will adopt a more liberal view of assisted suicide.”

Sadly, he also added that he “had no pressure from his family to change his mind.” (Emphasis added)

David Goodall was a renowned biologist who produced more than 100 research papers and earned three doctorates when:

“In 2016, at 102, the university ordered him to leave his office, calling him a safety risk to himself. Goodall challenged the decision, which was reversed after an outpouring of public support.

Earlier this year, however, Goodall fell while at home alone in his one-bedroom apartment and remained on the floor for two days until he was found by his cleaner, according to The New Daily.

Afterward, Goodall said he was considered incapable of looking after himself. Moreover, most of his friends were dead.”

Philip Nitschke, director of Exit International, a right-to-die organization in Australia called Goodall’s “story of elective, rational suicide by the elderly is an important one.” (Emphasis added)

CONCLUSION

What a sad, depressing story Mr. Goodall’s story is compared to Melissa’s!

This should be a wake-up call to the rest of us not only about the frightening expansion and promotion of physician-assisted suicide but also about how all of us need to recognize the value, wisdom and even inspiration of older people.

We must also recognize that we all need help at some point in our lives. We are totally dependent on others when we are born and many of us need at least some help near the end of our lives. But when we truly care for each other, both the helper and the person being helped are enriched to live their best lives.

 

 

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

nancyvalko conscience rights, culture, disability, economics, euthanasia, food and water, law, medical ethics, mental health, nursing

“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?

nancyvalko end-of-life, law, medical ethics

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

nancyvalko disability, food and water, futility, law, medical ethics

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.