“Rational” Suicide and the “Elderly”

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

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.

 

 

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.

 

A Dark Side of Prenatal Testing

In her February 2018 article “Prenatal Testing and Denial of Care” , Bridget Mora exposes another dark side of prenatal testing: refusal to treat. Ms. Mora is the community education and communications coordinator for Be Not Afraid, a nonprofit that supports parents experiencing a prenatal diagnosis and carrying to term.

While most people have heard of amniocentesis (using a needle to extract and analyze the fluid surrounding an unborn baby in the second trimester), many people are unaware of the screening blood tests that have now become virtually routine for all pregnant women.

The difference is that blood screening tests may indicate a probability or risk score that a baby has a chromosomal anomaly, but a definitive diagnosis can only be made through amniocentesis or CVS (Chorionic villus sampling) using a needle to take a sample of tissue from an unborn baby’s placenta for analysis in the first trimester. Tragically, some parents make a decision to abort based on just a blood screening test.

Ms. Mora tells the story of Oliver Keith whose parents refused amniocentesis because of the risk of miscarriage. When an ultrasound showed abnormalities that suggested a genetic condition like Trisomy 13 or 18, the parents agreed to a blood test when the doctor told them that a diagnosis would ensure the proper treatment when Oliver was born.

However, when the results of the tests showed that Oliver had Trisomy 18, their son was “denied routine care during labor as well as the heart surgery that the same doctors had said would be necessary before the trisomy 18 diagnosis”.

The parents felt that Oliver was being discriminated against because of his trisomy 18 diagnosis and tried to give Oliver every chance at life but, in the end, Oliver died.

WHAT YOU NEED TO KNOW ABOUT PRENATAL TESTING

When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome.

Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS.

I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy.

After that, I was remarkably worry-free during my last pregnancy and delivered a healthy girl.

But maternity care has changed a lot since 1985.

Ms. Mora has done a great service in researching newer developments in prenatal testing that now include routine blood tests for all expectant mothers regardless of age or risk factors.

She notes that most parents are simply looking for reassurance that their baby is healthy.

But she also notes:

“Parents may not understand the difference between screening and diagnostic tests or be prepared for the consequences of a poor diagnosis or prognosis.

Very few genetic conditions can be treated prenatally, so if a disability is found, the “cure” proposed by the medical team is frequently abortion. In our utilitarian culture, prenatal screening has increasingly become a search-and-destroy mission to detect and eliminate babies with disabilities as early in pregnancy as possible.

Pressure to abort quickly, before they have had time to process a poor diagnosis and grieve the loss of the healthy child they expected, can throw parents off their usual moral compass.”

PHYSICIAN ATTITUDES MATTER

Ms. Mora is especially concerned about a newer and expensive cell-free fetal DNA test (also called NIPT) done in the first trimester using the mother’s blood. She says that although promoted as up to 99% accurate, independent laboratory studies have found that a positive result for a genetic condition can be incorrect 50% of the time or more.

Ms. Mora writes:

“Despite these serious limitations, adverse NIPT results all too frequently lead parents to have an abortion or doctors to alter treatment.

If a disability or potential disability is detected, the pressure to abort quickly may become intense. Although most parents undergo prenatal screening or testing with no plan to abort on the basis of the results, 80 percent decide to abort after being told their unborn baby has a severe congenital anomaly.

Counseling from physicians is often directive and parents may be encouraged to terminate on the basis of the doctor’s personal biases. A survey conducted by the American College of Obstetricians and Gynecologists found that 90 percent of the doctors who responded considered abortion to be a justifiable response to uniformly fatal fetal anomalies. Sixty-three percent considered abortion to be a justifiable response to nonfatal anomalies.” (Emphasis added)

HOPE

Bur even when the prognosis for an unborn baby is terminal, Ms. Mora maintains that parents usually want a better option than abortion and states that when offered perinatal hospice support, about 80% of US parents choose to carry their child to term and studies have found that “there appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis.”

And as I wrote in “Parent Power”, parents themselves are changing physician attitudes towards children with genetic conditions and even producing laws like “Simon’s Law” which passed in Kansas in 2017.

In the end, knowledge is power and discrimination against people with disabilities is wrong no matter how small the person.

 

Six Things You Need to Know about Physician-Assisted Suicide

This article was originally published in The Public Discourse on December 19, 2017

Six Things You Need to Know about Physician-Assisted Suicide

Pull quote: Is the real healthcare crisis not enough physician assisted suicide laws? Or
is it the staggering and increasing number of people losing their battles
with mental illness and committing suicide?

It has been twenty years since Oregon’s physician-assisted suicide law took
effect after a public referendum. Since then, four other states have
legalized physician-assisted suicide.

Polls seem to show strong public support for physician-assisted suicide. They ask questions like this one from a  2017 Gallup poll: “When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should
not be allowed by law to assist the patient to commit suicide if the patient
requests it?”

Unfortunately, most people have only a vague idea about what such laws
actually say and do. Here are six things you must know before you decide
whether to support or oppose physician-assisted suicide.

1. Pain or any other suffering is not a requirement for a person seeking
assisted suicide; “a disease that cannot be cured” can include manageable
conditions like diabetes as well as terminal illnesses like cancer.

None of the US laws are restricted to patients experiencing pain, which can
be addressed in ways that do not deliberately kill the patient. In 2016, for
example, almost half of patients using assisted suicide in Oregon cited their reason for seeking death as “Burden on family, friends/caregivers” while just 35 percent cited “Inadequate pain control or concern about it.”

2. Medical professionals participating in physician-assisted suicide are
immune from accountability and standards of due care.

“No person shall be subject to civil or criminal liability or professional
disciplinary action for participating in good faith compliance with”
Oregon’s law. Thus any licensed doctor (or other healthcare provider), with
or without experience and regardless of his or her medical specialty, can
write a lethal overdose prescription for a patient as long as he or she
claims to be in “good faith compliance.” As a legal standard, this test is
effectively meaningless, because it relies only on the physician’s word.

The physician is not required to be-and often is not-the patient’s primary
care doctor. Many physicians do not want to be involved in this process,
according to “Compassion & Choices,” an organization that promotes the legalization of physician-assisted suicide throughout the United States. When one doctor (or many) conclude that it would be irresponsible to give a lethal overdose to a patient, such
organizations encourage patients to find a doctor with lower standards.

No other medical intervention has such immunity protection from lawsuits or
criminal investigation. In addition, no other medical intervention is so
devoid of standards for the clinical expertise or education required of the
physician involved.

3. Physician-assisted suicide does not involve the stringent documentation
and oversight required for other medical interventions.

In all jurisdictions where physician-assisted suicide is allowed, to
prescribe a lethal overdose the doctor need only fill out the required state
forms that include a consultation with a second physician who agrees.
Neither doctor is required to have a professional relationship with the
patient before the physician-assisted suicide request.

Documentation of physician-assisted suicides relies on doctors’
self-reporting. There is no requirement that the actual taking of the lethal
overdose be witnessed by a medical professional or anyone else. This means
that there is no safeguard against medical complications, coercion by family
members, or other problems.

The Oregon law also specifies that, “Except as otherwise required by law, the information collected shall not be a public record and my not be made available for inspection by the public”, after which the original forms are destroyed.

Unfortunately, the immunity protections and secrecy surrounding even the minimal self-reporting in state-level assisted-suicide laws eliminate the possibility of future potential lawsuits or prosecutions for abuse. They keep alive the myth that there are strong safeguards in the law that eliminate problems like coercion or elder abuse.

4. The cause of death must be falsified.

States with physician-assisted suicide laws require that the cause of death is reported as death from an underlying condition rather than the lethal overdose, supposedly to ensure the patient’s privacy. But this clearly violates the standards set for coroners
and medical examiners by the Centers for Disease Control. Those standards require accuracy in determination of death because “The death certificate is the source for
State and national mortality and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.”

Falsified death certificates also quietly function to smooth over any problems with life insurance policies that have suicide clauses denying death benefits if the insured commits suicide within two years of taking out a policy. And since doctors are only required to “recommend that the patient notify next of kin” about the plan for assisted suicide, the rest of the patient’s family may never know the real cause of death. This means that they are also deprived of the chance to reassure their loved ones of their
support and willingness to help take care of them until their natural death.

5. Assisted suicide laws promote discrimination against suicidal people.

The usual standards for caring for a suicidal person include intensive management to prevent suicide attempts. These are changed in physician-assisted suicide: “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” Only the evaluation of a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required . It is shocking that only 3.8 percent of those seeking physician-assisted suicide in Oregon were referred for psychiatric
evaluation in 2016. Patients with dementia and with clinical depression that had existed for years before they contracted a physical illness have died under the Oregon law.

6. Suicide is contagious.

A 2015 article in the Southern Medical Journal titled “How Does Legalization of
Physician-Assisted Suicide Affect Rates of Suicide?” studied Oregon’s and Washington’s rates of non-assisted suicide after assisted suicide laws were passed. Despite claims that assisted suicide laws would reduce other suicides or only substitute for them, the authors reached the disturbing conclusion that “Rather, the introduction of PAS (physician assisted suicide) seemingly induces more self-inflicted deaths than it inhibits.”

This does not surprise me. In 2009 my thirty-year-old, physically healthy daughter Marie died by suicide. She killed herself using a technique she learned after visiting assisted suicide/suicide websites and reading Final Exit (1991) by Derek Humphry, founder of the Hemlock Society (an organization that merged with another group to form Compassion & Choices). The medical examiner called her suicide “textbook Final Exit.”

Adding to our family’s pain, at least two people close to Marie became suicidal not long after her suicide. Luckily, they were saved, but suicide contagion, better known as “copycat suicide,” is a well-documented phenomenon. Often media coverage or publicity around one death can encourage other vulnerable people to commit suicide.

According to the Centers for Disease Control and Prevention, suicide rates have been
increasing since 2000 after decades of decline. Suicide is now the tenth leading cause of death in the United States, with more than 44,000 people dying by suicide every year. Suicide costs society over $56 billion a year in combined medical- and work-loss costs, not to mention the enormous toll suicide takes on family and friends. Oregon’s suicide rate is more than 40 percent higher than the national average.

Is the real healthcare crisis not enough physician-assisted suicide laws? Or is it the staggering and increasing number of people losing their battles with mental illness and committing suicide?

No matter what Compassion & Choices says, physician-assisted suicide is not a civil right or just one of an assortment of morally neutral end-of-life options. It’s time to stand up and fight to keep the medical profession from abandoning its most fundamental ethical principles.

Nancy Valko, RN, ALNC, is a longtime writer and speaker on medical ethics issues who recently retired from critical care nursing to devote more time to consulting and volunteer work. She is also a spokesperson for the National Association of Pro-Life Nurses.

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Compassion and Choices Celebrates as the Massachusetts Medical Society Becomes the 10th State Medical Association to Succumb to the Physician-assisted Suicide Agenda

In 1980, the Hemlock Society (now known as Compassion and Choices) was formed to  work for the legalization of physician-assisted suicide by proposing state legislative bills, voter initiatives and public advocacy.

These efforts failed until finally in May 1994, the Oregon Medical Association changed its position opposing physician-assisted suicide to neutrality.

Six months later, Oregon voters approved the very first US physician-assisted suicide law 51% to 49%.

Not surprisingly, now the Oregon Medical Association “supports the position that ‘death with dignity’ (aka physician-assisted suicide) is part of the doctor-patient relationship”.

Obviously, the neutrality of the medical association was a big factor in getting the first physician-assisted suicide law passed in the U.S. as well as its eventual integration into Oregon’s health care system.

Now, Compassion and Choices, the now well-funded promoter of assisted suicide and other death “choices”, is celebrating that:

“The Massachusetts Medical Society is the 10th American Medical Association chapter that has dropped its opposition to medical aid in dying and adopted a neutral stance on the practice, including nine of them in the last two years. The others are the California Medical Association in 2015, Colorado Medical Society in 2016, Maryland State Medical Society in 2016, Medical Society of the District of Columbia in 2016, Maine Medical Association in 2017, Minnesota Medical Association in 2017, Nevada State Medical Association in 2017, Oregon Medical Association in 1997 and Vermont in 2017.” (Emphasis added)

And that:

“Massachusetts’ ‘neutral engagement’ position is even better than a simply neutral position,” said Rebecca Thoman, M.D., campaign manager for Doctors for Dignity for Compassion & Choices. “It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Ironically, as the Boston Globe reported in January 2017,:

“The vote before the Massachusetts Medical Society was whether to approve a survey — just a survey — of members’ attitudes toward “medical aid in dying.” …

In the end, the policy-making body decisively endorsed the survey and approved $25,000 to fund it — a sign that the Massachusetts Medical Society may be reconsidering its historic rejection of what it has called “physician-assisted suicide.’’ It comes as this movement to give terminally ill patients an option to end their life at a time of their choosing is gaining traction, propelled in part by some physicians’ groups dropping their longstanding opposition. (Emphasis added)

The surveys were ultimately sent to 25,000 doctors but only 12 to 13 percent were returned. Of those returned, approximately 60 percent of respondents wanted the medical society to rescind its opposition to physician-assisted suicide, while 40 percent wanted to keep the policy.

The most fundamental medical ethic of not killing or helping patients kill themselves must not be reduced to a popularity contest.

If this radical change in medical ethics results in the Massachusetts legislature legalizing physician-assisted suicide or by yet another voter referendum, the Compassion and Choices agenda to legalize assisted suicide throughout the U.S. will continue to accelerate to the detriment of the health care system, ethical health care providers and all medically vulnerable people.

Killing with Love?

Two disturbing news items in the UK recently caught my eye. Both involved actions considered criminal in the past, but now reconsidered as acts of love. Unfortunately, we have had similar cases here in the US.

MAN WON’T GO TO PRISON AFTER KILLING HIS DIABETIC FATHER WITH AN OVERDOSE OF MORPHINE

In a November 17, 2017 UK Telegraph article, a 59 year old chemist named Bipin Desai, admitted pouring morphine into his father’s fruit smoothie and then injecting the diabetic father with insulin. The judge directed the jury to find Mr. Desai not guilty of murder but rather of assisted suicide.

The judge told Mr. Desai that:

“Your acts of assistance were acts of pure compassion and mercy. Your father had a solid and firm wish to die. For him, being assisted to die would be fulfilling his wish of going to heaven to see his wife and being put out of his misery.”

Ironically, the father was not even terminally ill but rather “he had just had enough of life and there are no real authorities who deal with that situation.” (Emphasis added)

Mr. Desai was allowed to go free with a suspended nine month prison sentence for assisting his father’s suicide and told by the judge:

“You are free to now go with your family and start the process of rebuilding your life.”

And apparently still able to be an heir.

MOM WINS $12 MILLION IN WRONGFUL BIRTH LAWSUIT, SHE WISHES HER SON WAS NEVER BORN

Omodele Meadows of the UK was given $12 million dollars for the “wrongful birth” of her now 6 year old son Adejuwon.

Four years before she became pregnant, Ms. Meadows had a test to see if she had the gene linked to hemophilia because a relative had a child with the condition. Ms. Meadow’s test mistakenly showed that she did not have the gene.

After her son was born and found to have both hemophilia and autism (a condition that has no prenatal test, at least for now), she sued the doctor who gave her the results. Ms Meadows claimed that if she knew she had the gene for hemophilia, she would have had her son prenatally tested and aborted him.

The judge wrote:

It cannot be easy for any mother to contend bluntly that her child should not have been born. ‘Her love for her son shone through from her written statements. ‘She had specifically sought to avoid bringing a child with hemophilia into the world, knowing the suffering that condition causes.” (Emphasis added)

The judge added that Ms. Meadows now loves her son dearly and had only brought the claim “to provide a better life for her son”.

Did anyone wonder what Baby Adejuwon will think if or when he finds out about the circumstances of his mother’s case?

CONCLUSION

Before the legalization of abortion and euthanasia, we had consensus that killing a person because he or she was ill or disabled was absolutely wrong and unjust.

Now we are urged to accept that killing can be a loving act and should not be criminalized. And, if a diagnostic mistake is made and an abortion avoided, parents who would have aborted should be compensated, even richly.

What does that tell people who are ill or who have disabilities as well as all of us who lovingly care for these people? What does this do to our laws, ideals and attitudes?

In our hearts, we all really know that caring for lives, not killing, is the right thing to do. When we insist on ignoring this truth, tragedies like these two cases will not only continue but also devolve into terrible social, medical and legal policies that will affect us all if we do not speak out now.

A Thanksgiving Story

This fall, an expectant mother from a small town in Missouri found out that her son had spina bifida, a condition where the spinal column does not close all the way during the baby’s development. This can cause a range of serious, even life-threatening problems such as nerve damage, paralysis and fluid buildup around the brain.

In the past, babies with this condition were operated on soon after birth but in the last few years, intrauterine (inside the womb) surgery was developed to treat the baby before birth to get the best possible outcome for the baby. In an October 23, 2017 New York Times article about one such surgery, the doctors claimed that the optimal time for this surgery is 24 to 26 weeks.

Although many women tragically abort their babies with spina bifida, this brave expectant mother wanted for this surgery for her son. The surgery was scheduled at a large medical center in St. Louis.

Hearing about this, a call was put out to the St. Louis pro-life community to help this mom. One person donated an apartment near the medical center for her before the surgery because she was on bed rest and afterwards for recovery.  Many people made meals and helped in other ways.

Mother and baby are now doing well and we are all praying for an uneventful final weeks of pregnancy and a safe delivery.

Especially at Thanksgiving, we give thanks for the blessings we enjoy. Perhaps we should also give thanks that we have such wonderful, selfless people like those in this story!

The Changing Rules for Organ Donation

BACKGROUND

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

But do we really know what we are signing?

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

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

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

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

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

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

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

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

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

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

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

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

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

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

CONSEQUENCES

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

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

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

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

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

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

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

CONCLUSION

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

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

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

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

 

“What Kind of Society Do You Want to Live In?”

This month, CBS News aired a TV show titled “Why Down Syndrome in Iceland Has Almost Disappeared. Iceland encourages all expectant mothers to test their unborn babies for birth defects and, when a probable (85% accuracy, according to the show) Down Syndrome  diagnosis is made, almost all mothers have an abortion. This is the highest percentage of all countries. But Down Syndrome is not being “eradicated”. The children are.

In the show, an Icelandic mother who has a 7 year old daughter with Down Syndrome was interviewed. She said about her daughter:

“I will hope that she will be fully integrated on her own terms in this society. That’s my dream, Isn’t that the basic needs of life? What kind of society do you want to live in?” (Emphasis added)

A counselor at an Icelandic hospital had another view and

“tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.” (Emphasis added)

Horrifyingly, she also shows the reporter “a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.” (Emphasis added)

The counselor ends by saying:

“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.” (Emphasis added)

CONCLUSION

In June, I wrote a blog “Baby Doe and Karen-35 Years Later” about the medical discrimination that both of those gentle souls with Down Syndrome faced in their short lifetimes.

But as frightening as that discrimination was, the reaction from others-even family-when Karen was born was the most heartbreaking.

When Karen was born, there were no congratulations or smiles from the staff or relatives even though Karen was unarguably a beautiful and serene baby girl. But although shattered by the initial (and wrong) diagnosis of an inoperable heart defect, I was determined that Karen be welcomed at least by me. So on the night she was born, I sang “Happy Birthday” and told her how much I loved her through my tears.

After Karen tragically died almost 6 months later, even some family members told me that I should not have tried so hard to save “that baby”.

My point is that it is not enough to just be against aborting or withholding treatment from babies with disabilities. They and their parents must feel supported and encouraged instead of isolated or pitied.

Now that’s the kind of society I want to live in!