35 Years after Baby Doe Continued: The Simon Crosier and Charlie Gard Cases

Last week, I wrote about Baby Doe and my daughter Karen and how both were medically discriminated against 35 years ago because they were born with Down Syndrome. The ethical rationale in both cases help set the stage for the legalized assisted suicide/euthanasia we struggle against today.

Unfortunately, the legal right to live for children with disabilities and their parents continue to be under attack today with the cases of Simon Crosier and Charlie Gard.

SIMON CROSIER

Last August, I wrote a blog titled “Parent Power” about the efforts by some legislators in Missouri and Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility policies in even some Catholic hospitals that led to the death of Simon Crosier, a baby born with Trisomy 18.

Since that blog, Kansas finally did pass Simon’s Law but in Simon’s home state of Missouri, the bill is still stuck in committee even though new information about the life expectancy and prognosis for such children led to an opinion editorial in the prestigious Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

The fight for Missouri’s Simon’s Law will continue.

CHARLIE GARD

On June 30, 2017, the parents of 11 month old Charlie Gard lost their appeal to European Court of Human Rights to keep their son with a rare genetic disorder on life support and take him to the US to try an experimental treatment. The appeal was filed after Britain’s Supreme Court decided to let the hospital remove Baby Charlie’s life support, finding that prolonging Charlie’s life was “not in his best interests.”

Baby Charlie has a rare genetic disorder affecting his muscles and brain that has caused  brain damage, seizures and prevents him from breathing on his own.  A neurologist in the US has suggested an experimental nucleoside treatment that might, in theory, offer some benefit although the treatment has not been tried before in a situation like Baby Charlie’s.

On Facebook, Charlie’s parents said that they were “heartbroken” and aghast that the hospital would not even allow them to take their son home to die.

Charlie’s parents have been fighting for months for the right to take their son to the US try this experimental treatment. By the time of the court decision, $1.7 million had been raise through crowdfunding media to cover expenses.

Unlike the Simon Crosier case, the withdrawal of treatment decision by the hospital was not secret.

Apparently under British law, parents do have the right to make decisions about the treatment of their children unless the treatment is not in a child’s “best interests” and usually it is parents who refuse treatment for their children on moral of religious grounds who end up in court.

The Charlie Gard case has caused enormous conflict among ethicists, lawyers and even religious leaders across the world as well as the general public.

However, in the last few days, Baby Charlie and his parents gained support from two important people: Pope Francis and US President Donald J. Trump.

At first, a Vatican official issued a statement on Baby Charlie that “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” But a few days later and after much criticism of the first statement, Pope Francis expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected. (Emphasis added)

Then, after a July 3, 2017 offer by President Trump to help, an unnamed US hospital came forward to offer free treatment to Baby Charlie.

CONCLUSION

On their GoFundMe page , Baby Charlie’s parents wrote:

If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx (Emphasis in original)

Over my decades of nursing experience, I have seen people decide to try experimental treatments because they hoped for a cure, improvement or at least to help doctors learn more that may help someone else later.

Sometimes the treatments worked and sometimes they didn’t but after talking with these patients (or parents), I could not help but admire their love, courage, faith and determination.

May God bless Baby Charlie, Baby Simon and their parents!

Baby Doe and Karen-35 Years Later

When I started nursing school 50 years ago, medical ethics was not a course but rather common sense principles incorporated into our education. There was no controversy about not harming patients, integrity, equality of treatment regardless of status, etc.

So, of course, abortion and euthanasia were unacceptable and even thinkable in those days.

I particularly remember one teacher who told us about the hypothetical situation of a child with Down Syndrome whose parents wanted to let their baby die and how we naturally had to put the interests of the child first. This kind of protection for patients was routine both ethically and legally in those days.

In 1982, I remembered that situation when Baby Doe,  a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe), was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court after the Indiana Supreme Court ruled 3-1 against saving him.

My husband, a doctor, and I were appalled when we first read about Baby Doe in the newspaper and my husband suggested that we adopt the baby ourselves and pay for the surgery.

I said yes but with some reluctance since I was already pregnant with our third child and our other children were just 5 and 3. But who else was better situated than us to care for a child with a disability who needed surgery?

In the end, we were too late to save Baby Doe. We found out that Baby Doe’s parents had already rejected the many other families who tried to adopt him.

Five months later, I gave birth to my daughter Karen who also happened to have Down Syndrome and a life-threatening condition that needed surgery.  Karen was born with a complete endocardial cushion defect of the heart  that the cardiologist told us was inoperable. We were told to just take her home and our baby would die within 2 weeks to 2 months.

I was heartbroken and cried for 3 days in the hospital before I finally got mad. My obstetrician never came back to check on me in the hospital even though I had a C-section and I demanded a second opinion on her heart condition in case the cardiologist was biased against children with Down Syndrome.

I insisted on leaving the hospital early with my daughter because I wanted as much time as possible with her and especially because I realized that I needed to research Karen’s heart condition to effectively advocate for her.

I joined the St. Louis Down Syndrome Association which helped me enormously, especially with my research and emotional support. Fortunately, it turned out that the initial prognosis was wrong and the cardiologist told us that Karen’s heart could be fixed with just one open-heart operation at age 6 months.

I was elated until the cardiologist told me that he would support my decision to operate “either way”, meaning I could refuse surgery just like Baby Doe’s parents.

I was furious and told him that the issue of Down Syndrome was irrelevant to Karen’s heart condition and that my daughter must be treated the same as any other child with this condition. I also added that if he were biased against people with Down Syndrome, he could not touch my daughter.

To his credit, this doctor recognized the injustice and because of Karen, he eventually became one of the strongest advocates for babies with Down Syndrome.

Unfortunately, I ran into other medical professionals caring for Karen who were not so accepting. One doctor actually told us that “people like you shouldn’t be saddled with a child like this” and another doctor secretly wrote a DNR (do not resuscitate) order against my instructions at the time. It was then that I realized that my so-called “choice” to save my daughter was really a fight.

Tragically, Karen died of complications of pneumonia when she was just 5 ½ months old and just before her scheduled open-heart surgery. I will always miss her but I am so grateful that I was her mother. Karen changed many lives for the better, especially mine.

I became active in the Down Syndrome Association, promoted President Reagan’s “Baby Doe” rules ,  provided babysitting/respite for many children with various disabilities, and even got a chance to talk to then Surgeon General C. Everett Koop about setting up a national hotline for new parents of children with disabilities to find resources.

But most importantly, I was determined to find out what had happened to medical ethics  over the years since nursing school that resulted in the Baby Doe tragedy and hopefully help reverse the mindset that people with disabilities were “better off dead”.

What I discovered was a landmark 1979 book titled “Principles of Biomedical Ethics” written by Tom Beauchamp PhD, a professor of philosophy, and James Childress PhD, a theologian and also a professor of philosophy. Neither one had a medical degree.

They devised these four principles for medical ethics:

  • Autonomy – The right for an individual to make his or her own choice.
  • Beneficence – The principle of acting with the best interest of the other in mind.
  • Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
  • Justice – A concept that emphasizes fairness and equality among individuals.

Although all these principles were considered equal, it wasn’t long before autonomy became the cornerstone principle in ethics and law, ultimately leading not only to Baby Doe but also to the legalization of assisted suicide/euthanasia.

Ironically, all these principles have been used to justify cases like Baby Doe’s as well as assisted suicide/euthanasia.

Beneficence and non-maleficence have become a ways to see death as an actual blessing to real, perceived or potential suffering. Ominously, the justice principle has become the rationale for rationing under the guise of supposedly not wasting scarce healthcare resources .

CONCLUSION

35 years after Baby Doe, some things like medical technologies and education for people with disabilities are better but many things like assisted suicide/euthanasia have pushed the ethics of death even farther and are a threat to all of us and our loved ones.

The Baby Doe tragedy should have been a fire alarm for the evils we see today but it is never too late or impossible to try to promote a culture of respect for all lives.

An Interview with an Assisted Suicide Doctor

It’s not often that we get a glimpse into the assisted suicide movement from the perspective of a medical professional who actually participates in terminating the lives of the terminally ill. Most seem to prefer anonymity.

But in a fascinating American Society of Clinical Oncology Post interview Examining the Impact of ‘Death With Dignity’ Legislation”, oncologist Charles D. Blanke MD, FACP, FASCO talked not only about his recent medical journal article “Usage of Oregon’s Death with Dignity Act” but also his surprises and concerns about the almost 20 year old Oregon law.

‘SURPRISING FINDINGS”

When Dr. Blanke was asked if anything had surprised him about the findings in his article, he replied

“I was a bit surprised by how rarely the prescribing or consulting physicians refer patients for a psychiatric consultation. According to our study, only 5% of patients received these referrals. In national surveys, many psychiatrists say that depression among terminally ill patients would disqualify them from participating in physician-aided death.

I was also surprised to learn how rarely a physician is present when the patient takes the medication—in only 17% of cases is that so. My guess is that physicians aren’t asking what their patients would prefer, because when I’ve asked my patients if they would like me to be present when they take the medication, 100% say “yes. (Emphasis added)

When asked about the spike in the numbers of lethal prescription in the last two years of his study,  Dr. Blanke replied that:

“There are several factors, including greater national awareness of this issue and the fact that there are several other states now with this legislation in place. Also, some of the medical societies that formerly opposed the law, such as the American Medical Association, have softened their stance and agreed to study whether they should be neutral on physician-assisted death.” (Emphasis added)

Note: Actually, the AMA has not officially changed it opposition to physician-assisted suicide although assisted suicide supporters hope for this. However, the American Society of Clinical Oncology has taken no official position on physician-assisted suicide, which is actual neutrality.

PALLIATIVE CARE, INFORMED CONSENT AND CONSCIENCE RIGHTS

Sadly, while Dr. Blanke says he is a big supporter of palliative care, he went on to also state:

“However, I strongly feel that there are some patients you simply cannot palliate. They have concerns about their quality of life and their ability to do the things they enjoy, they are suffering relentlessly, and they want to take back some control over their life. Physician-aided death not only doesn’t cause harm, in my estimation, it can give people that extra bit of control over their life, including the 33% of patients who fill the prescription but never take it. Just having the prescription on hand gives patients an immense feeling of control and comfort. (Emphasis added)

On informed consent, Dr. Blanke does acknowledge that:

“There certainly is worry that a family member might push the medication on a patient because of financial concerns, but that scenario is harder to measure. Rarely, you do get a sense that there may be some outside pressure on patients to take the medication” (Emphasis added)

Instead, Dr. Blanke says that in his experience, it usually is the patient who wants the lethal overdose and the family members who oppose it.  Ironically, assisted suicide laws do not require even notification of family members-at least until after death.

And on conscience rights for those medical professionals who refuse to participate or refer, Dr. Blanke  states that:

“Physicians have an ethical obligation—not to offer the option, if they are personally opposed to it—but to understand what the process entails, to be knowledgeable enough to explain to patients the pros and cons of their decision, and to refer them to a physician if they still want to pursue physician-assisted death….Sticking your head in the sand and refusing to take part at all during this critical time in a patient’s care does a huge disservice to that patient.” (Emphasis added)

Yet, responding to a question on the ethical or moral dilemmas assisted suicide laws pose for oncologists, Dr. Blanke states:

“We have patients who are suffering horribly, and we are helping to end their suffering, so I don’t see how that can be construed as harming our patients.

However, physicians are also faced with the reality of giving a patient a medication that is guaranteed to kill that patient, and regardless of your position on these laws, taking that action is very challenging for any human being, let alone a physician. ” (Emphasis added)

 

CONCLUSION

Over the years, I have seen some of my health care colleagues-like the general public-begin to tentatively approve assisted suicide in the usual polling question about a hypothetical case in which a person is terminally ill and in “unbearable pain”. (Ironically, Oregon’s law does not even mention “pain” or “suffering” as a necessary criteria to be approved  for assisted suicide.)

But I found there are very few fellow professionals who are actually willing to perform or even witness such a death. This is apparently why Compassion and Choices, the former Hemlock Society, also needs to provide help in finding doctors to write lethal prescriptions.

We must realize that there are no winners when assisted suicide is legalized-not the patient, the health care system, society or even the assisted suicide practitioner.

How to Recognize Stroke Symptoms and New Study Shows More Hope for People with Strokes

As a nurse and a relative, I have seen the devastating results of major strokes, medically called cerebrovascular accidents (CVA). Decades ago, there was little that could be done medically except rehab to help with the effects of a major stroke. Now we have new techniques and new hope. However, these techniques depend on the person having the stroke or the people around them recognizing the symptoms and getting immediate medical treatment.

WHAT IS A STROKE?

Strokes happen when some brain cells die due to a lack of oxygen when the blood flow to the brain is impaired by a blockage (ischemic CVA) or rupture of a blood vessel (hemorrhagic CVA).  Symptoms depend on the area of the brain affected.

In 1996, the FDA approved tissue plasminogen activator (tPA), an intravenous medication that can dissolve blood clots in the 80% of strokes caused by blockage of blood flow (ischemic CVA). It cannot be used with strokes caused by bleeding and tPA must be given within a 3-4 hours following the onset of symptoms. If given promptly, the Stroke Association estimates that1 in 3 patients will see their symptoms resolve or have major improvement.

For the less common strokes caused by bleeding (hemorrhagic CVA), surgery like clipping, coils or removal may help reduce long-term damage and relieve pressure on the brain.

In 2004, the FDA approved the first medical device that could actually remove blood clots from blocked brain arteries in ischemic CVAs and the window of opportunity to treat was eventually widened to 6 hours after the onset of symptoms. After 6 hours, experts thought the affected areas of the brain were dead or irreparably damaged.

Now, a new study shows that that window may be widened to 24 hours  and this would allow many more patients to benefit.

The researchers  “contended that many patients have a ‘mismatch’ between the dead tissue where a stroke started and the far larger territory of brain tissue that is threatened, but still alive”. The results of the study on 206 patients with serious strokes at 32 hospitals in the U.S., Spain, France and Australia are impressive and hopefully will be proven and replicated.

My point is that medical progress is made when we don’t give up on people.

In the meantime, there is much we can do to help people with strokes.

SYMPTOMS OF STROKE

As a nurse, I made sure that all my relatives, especially the older ones, could recognize the symptoms of stroke and the importance of immediate treatment. Everyone needs to know and pass along this information from webmd.com  to others:

“Sometimes a stroke develops gradually. But you’re more likely to have one or more sudden warning signs like these:

  • Numbness or weakness in your face, arm, or leg, especially on one side
  • Confusion or trouble understanding other people
  • Trouble speaking
  • Trouble seeing with one or both eyes
  • Trouble walking or staying balanced or coordinated
  • Dizziness
  • Severe headache that comes on for no reason

The FAST test is a quick way to check someone for symptoms.

Face: Smile! (Does one side of their face droop?)

Arms: Raise both arms. (Is one higher than the other? Do they have a hard time holding one up?)

Speech: Repeat a short, simple sentence, like “Mary had a little lamb.” (Do they slur their words? Is it hard to understand them?)

Time: If any of these are “yes,” call 911.”

Also, note the time when symptoms started. The hospital staff needs to know this.

The life and health you save may be your own!

My Amazing Operation

Last week, I underwent a minimally invasive (small incision) operation that I hadn’t heard of before but which appears to be already making a big difference in my health. The operation is called a parathyroidectomy.

The parathyroid glands are four small glands located behind the thyroid in the neck whose sole function is to control the amount of calcium in our bodies within a tight blood range of about 8.5-10.5 mg/dL, depending on a particular laboratory’s values.

As the American Association of Endocrine Surgeons’ website notes:

“Every cell and organ in the body uses calcium as a signal to regulate their normal function. Therefore, it is crucial that calcium levels are tightly controlled. Abnormally high blood calcium levels can damage every organ in the body gradually over time.” (Emphasis added)

If one or more of these small parathyroid glands starts growing (called an adenoma and rarely cancerous), this causes the parathyroid to release too much parathyroid hormone which causes abnormally high calcium in the bloodstream. This can cause serious health problems like cardiovascular disease, osteoporosis (bone loss which can lead to fractures), depression , increased risk of cancer and even premature death.

In the US, about 100,000 people of all ages develop this condition called primary hyperparathyroidism each year which predominantly affects older “populations and women two to three times as often as men.

The diagnosis of hyperparathyroidism is sometimes missed because the blood calcium is not especially high at first and symptoms can be unnoticed, mild or confused with other conditions like normal aging.  Also, doctors often take a wait and see approach if patients have no symptoms.

In primary hyperthyroidism, the diagnosis is usually made by discovering a high blood calcium level (often checked routinely at yearly visits) and a high parathyroid level in the blood (PTH) if other causes of high blood calcium have been ruled out. The PTH blood test is NOT a routine test and must be ordered separately.

In the 1990s, calcium levels above 12 mg/dL and age less than 50 were the National Institutes of criteria for parathyroidectomy when a patient did not have the classic symptoms of hyperparathyroidism, especially because the operation was such a big surgery.  However, now we have a minimally invasive parathyroid surgery that is usually low risk and only involves a small incision that can often even be done on an outpatient basis.  In the 2000s, the high calcium criteria for surgery on patients without symptoms was recommended to be reduced to just 1 mg/dL above the normal range (about 11.5 mg/dL).  However, my surgeon just told me last month that the criteria may be changing again down to an even lower level but that scientific paper will not be published until December.

MY EXPERIENCE

For the last few years, my blood calcium was at the upper end of normal and I had a diagnosis of borderline osteoporosis despite taking calcium pills daily and taking osteoporosis medication in the past.

When my blood calcium rose to 11.9, I researched the topic and I was alarmed by what I read. It was then that I realized that the symptoms of bone pain and increased fatigue that I never thought to mention to my doctor could actually be symptoms of an adenoma in my parathyroid.

I asked my doctor about getting a PTH test. That test turned out to be high and I was quickly referred to a surgeon well-experienced with hyperparathyroidism.

I underwent a short, minimally invasive surgery and I was one of the lucky ones who had this experience as described on the endocrineweb.com site:

Even though half of patients with this hyperparathyroidism (Parathyroid Disease) will state that they feel just fine, after a successful parathyroid operation more than 85 percent of these patients will claim to “feel much better”! Some say it’s like “someone turned the lights on”.

In my case, my bone pain was gone and I felt more energetic than I had in a long time.

I am happy that this operation is expected to start relieving my bone loss by returning the blood calcium to my bones. I am also relieved that I am avoiding long term damage to my body from high blood calcium.

I hope that this information will help others who may have this disease find better health!

CONCLUSION

There is still controversy over when and how to treat mild hyperparathyroidism without symptoms. Some experts have made extravagant claims about parathyroid surgery that make it sound like a miracle cure while others are more cautious about treatments and surgery. There is a tremendous amount of information available, especially on the internet, but I always recommend discussing health concerns with your doctor first.

Do Pro-Lifers Really Believe That “Life Begins at Conception and Ends at Birth”?

meeting Kaylee

One of the most frequently repeated myths in the abortion debate is that pro-lifers really don’t care about life. Some abortion supporters even maintain that pro-lifers believe “life begins at conception and ends at birth”   and do nothing for women and babies after birth.

The picture above is of me holding my newest granddaughter Kaylee Marie for the first time on May 17, 2017. Of course, we think she is gorgeous and are thrilled that she is a healthy 7 lb. 8 oz.

Some babies are not born so fortunate. Kaylee’s late Aunt Karen was born in 1985 with a severe heart defect as well as Down Syndrome and faced medical discrimination regarding heart surgery. The ones who stepped up to help were not the so-called “pro-choice” people but rather people who were pro-life.

It was after Karen that I actively joined the pro-life movement and learned that pro-lifers not only helped women and babies in crisis pregnancies but were also active in helping people of all ages and conditions as an antidote to the culture of death.

These wonderful people inspired me to get into personally helping families caring for babies with disabilities, working with people who had severe brain injuries and volunteering with people who had terminal illnesses, dementia or suicidal ideation.

And now, of course, I am also helping my daughter and her husband to get some sleep and adjust to the awesome responsibility and joy of their first child, baby Kaylee.

CONCLUSION

Kaylee’s mom was my next child after Karen. Foregoing medically unnecessary prenatal testing, I happily carried my daughter Joy with the certain knowledge that every child is truly a gift from God and that you can never lose when you love.

Abortion of any baby is ultimately a failure of  that love and reality. We in the pro-life movement are committed to promoting the best for all babies-even the planned and dearly wanted ones like Kaylee Marie-as well as their moms.

This is because pro-life is really an attitude of caring and helping, not political ideology.

“13 Reasons Why”and Why Not

Today, it is hard to keep up with the constant stream of information coming not only from TV and movies but also from the social network. But to understand and hopefully to protect and help our children and others in today’s culture, it is important to keep up with current media and trends as much as possible.

This is why, after reading articles like “13 Reminders About Netflix’s ‘Thirteen Reasons Why’” about a popular Netflix series featuring a high school girl named Hannah who gruesomely kills herself and leaves 13 tapes for the people she blames for her suicide, I decided to watch this often acclaimed  and controversial TV series myself.

After watching several episodes, I recognized some of the factors that made “Pretty in Pink” and “The Breakfast Club” so popular when my children were teenagers. The characters are attractive and bright high school students who wrestle with problems of self-esteem, setbacks, hormones and popularity.  In the end, most of the characters in those older movies were happier and/or wiser.

But the story arc and characters in “13 Reasons Why” are much darker. So far in the episodes I have watched, these teenagers are apathetic about school, seem to have no sense of humor and they dislike or barely tolerate their parents. Their overwhelming self-absorption with real or perceived offenses often leads them to be thoughtlessly cruel even to their friends. The adults in the series fare little better as they struggle with their own anger, sadness and guilt in trying to understand the tragedy.

The main character Hannah sounds almost triumphant in the tapes while chronicling the deficiencies in the people she holds responsible for her suicide. The people hearing the tapes are understandably devastated but revenge seems to be Hannah’s goal.

Even worse, the series’ depiction of Hannah’s descent to suicide, making the tapes and the reactions of her classmates tends to sensationalize suicide with little to no insight about prevention and treatment. The big lesson seems to be that bullying and sexual assault can be life-threatening to vulnerable teens.

Because this deliberately shocking series is so accessible to young people and teen suicides are rising,  many schools are now concerned about this series as are mental health experts  who recognize the phenomenon of suicide contagion.

In response to complaints and concerns from as far away as Canada and New Zealand, Netflix has now issued the following statement:

 There has been a tremendous amount of discussion about our series 13 Reasons Why. While many of our members find the show to be a valuable driver for starting important conversation with their families, we have also heard concern from those who feel the series should carry additional advisories. Currently the episodes that carry graphic content are identified as such and the series overall carries a TV-MA rating. Moving forward, we will add an additional viewer warning card before the first episode as an extra precaution for those about to start the series and have also strengthened the messaging and resource language in the existing cards for episodes that contain graphic subject matter, including the URL 13ReasonsWhy.info  — a global resource center that provides information about professional organizations that support help around the serious matters addressed in the show.

As a nurse who has worked professionally and personally with suicidal people as well as the mother of a daughter who died by suicide, I am glad Netflix is acknowledging at least some of the problems with the series. However, this series and the plight of our young people growing up in an increasingly secularized, materialistic and divided world that rejects God demands more.

We need to give our young people hope and support as they navigate the often rocky road to adulthood. And we also need to show them that the real heroes are those people whose dedication, moral virtues, hard work, selflessness and idealism inspire all of us to make a better world where no one will want to watch the so-called “entertainment” of a “13 Reasons Why”.

 

How Can Belgian Catholic Psychiatric Hospitals “Adjust” for Euthanasia?

I was in disbelief when I read Michael Cook’s article “Belgian Catholic psychiatric hospitals ‘adjust’ their view of euthanasia”.  I had to read the translated version on the Brothers of Charity order’s statement itself  myself to see if this was “fake news”.

Thankfully, Brother Rene Stockman, the superior general of the Brothers of Charity order, spoke out and said he was devastated by the news and then did three things:

“(F)irst we informed the whole congregation that as general superior we cannot accept this decision, because it is going totally against our charism of the charity. Secondly, we informed the Belgian Bishops conference about the situation and I am in contact with the president, Cardinal De Kesel. Also the Nuncio is informed. Thirdly, we informed the Vatican and all the information has been given to the Secretariat of State. In the meantime we continue to offer our clear arguments why we can never accept euthanasia.”

Brother Rene also warned that:

“In reality, only a few brothers are still involved in the government of the organization, so the majority are lay-people. Yes, there was a lot of pressure, but pressure doesn’t mean that we have to capitulate”

And

“Indeed, the presence of the brothers is not nearly sufficient, but also secularization is also poisoning the congregation in Belgium.”

Ironically, this comes less than 2 years after a pro-assisted suicide UK news service documentary titled “24 and Ready to Die” about Emily, a depressed young Belgian woman, was released but ended with the young woman changing her mind at the last moment.    Despite this, the documentary continued to support euthanasia even though one psychiatric “expert” who treated Emily was obviously wrong when she claimed that Emily’s suffering was so bad that it was “not compatible with life” and that her life did not have “sufficient quality”.

Emily is not the only one to change her mind. A 2014 Belgian study of 100 psychiatric patients  asking for euthanasia  showed that  “8 postponed or cancelled the procedure”. The study’s authors rationalized that these cancellations were “because simply having this option gave them enough peace of mind to continue living”! (Emphasis added)

Fortunately in 2016, the American Psychiatric Association passed a resolution opposing assisted suicide for the mentally ill.

Conclusion

As at least 3 European countries now allow assisted suicide for people with psychiatric problems and other countries like Canada are debating similar measures. Ethicists now write articles like ”Euthanasia for Reasons of Mental Health”  exploring the concept of including people with mental illness.

In the meantime, families like mine will continue to struggle with safety and treatment issues for our severely and chronically mentally ill relatives. We want real help for our loved ones, not assisted suicide or euthanasia. It is not compassionate, supportive or humane to have our loved ones “put down” like dogs.

“Physician-Assisted Dying: Is a Patient’s Despair Reversible?” by Arthur Caplan, PhD. And Maurie Markman, MD

A while back, I received a phone call asking me to talk to a man in another state who was desperately seeking physician-assisted suicide. He was in the later stages of a degenerative disease and wanted to die before his condition “got too bad”.

I talked to this man I will call “John” for quite a while about his life, his frustrations, his strengths, some resources, etc. He said he had told his caregivers at the nursing home that he would like to talk to someone about his concerns months ago but nothing happened. With his permission, I spoke to his caregivers and I asked John to keep in touch.

About a month later, John contacted me and said that he had changed his mind about assisted suicide and was enjoying being with friends and going out on trips with other residents.

He said the biggest help was talking with someone like me who listened and who cared.  Best of all, he said “I do deserve a better life!”

I thought about John when I read an April 06, 2017 commentary from Medscape, a password protected news site for medical professionals, titled “Physician-Assisted Dying: Is a Patient’s Despair Reversible?” 

The commentary was a discussion between Arthur Caplan, PhD, a prominent ethicist  who was against legalizing assisted suicide until the Brittany Maynard case, and Maurie Markman, MD, an oncologist and professor who also supports assisted suicide, that I found disturbing.

For example, Dr. Markman says that:

 “My concern is that the reason someone may ask for death, which is their right, is because of despair. Despair may be potentially temporary or it may be permanent, but death itself is permanent. My concern would be that some part of an individual patient’s despair may be reversible; I would want to be certain that it is not reversible before deciding that this (physician-assisted suicide) makes sense for that person, from my perspective.”
(Emphasis added)

But amazingly, neither Dr. Markman or Dr. Caplan even mentions or recommends  mental health evaluations for people considering assisted suicide-something which no assisted suicide law now requires because such suicides are considered “rational”.

Instead, there is this exchange:

Dr Caplan: I remember when Jack Kevorkian was bringing people to Michigan and helping them die in the back of Volkswagen vans and so on. One problem I had was that he did not know these people.

Dr Markman: That’s right.

Dr Caplan: They would show up, and 24 hours later, they would be gone to the hereafter; some of them were terminally ill, and some were not, as a matter of fact. Given the constraints that physicians face in terms of time and other activities they have to engage in—paperwork and so on—can they get to know patients well enough to have reliable discussions about the authenticity of their wishes to die?

Dr Markman: That is a concern. Physicians don’t have enough time to do a lot of things. The kind of conversation we are talking about would involve a lot of time and effort. I would suggest that physicians would want to be able to spend that time with their patients, but it does not mean they have that time. Quite frankly, it may be relatively immediate time. A patient comes in at a particular point and says, I’m thinking of doing this and I’m thinking of doing it now, and the doctor has a full schedule. The physician would want to take that time, would want to bring in the family, but it is difficult with time constraints. (Emphasis added)

There is another discussion of financial burdens impacting assisted suicide, with Dr. Caplan saying:

Dr. Caplan: Here is a source of growing despair: These treatments (for cancer) are causing me to go broke. I cannot afford a $100,000 biologic or immunotherapy, or I simply do not want to linger on and on while my grandson’s tuition is spent, or whatever. We have come to think about this as the problem of financial toxicity: more tools, but more associated cost. How does physician-assisted dying fit into this emerging area of financial burden?

Dr. Markman: … The potential for bankruptcy is becoming a major issue among patients with cancer. We know that during the Great Depression, people went bankrupt and committed suicide. Why could it not happen now, when we are talking about therapies that cost hundreds of thousands of dollars a year and patients have copays of 20%? Financial toxicity is real.” (Emphasis added)

CONCLUSION

Where is the compassion for these suicidal people grappling with issues that lead them to consider physician-assisted suicide?

This dispassionate discussion of some qualms that these supposed experts seem to have about physician-assisted suicide still leaves assisted suicide laws intact and does nothing to promote non-discriminatory suicide prevention and treatment or even conscience rights for those of us who oppose physician-assisted suicide.

Health Care Bullying Over Conscience Rights

Years ago, some of my fellow nurses were talking about assisted suicide and two of them supported physician-assisted suicide. I asked if they were comfortable with participating in an assisted suicide. Both were shocked and said no.

They believed the myth that doctors just write lethal prescriptions that patients then go home and take privately. It never occurred to them that they could be involved if the assisted suicide occurred in a healthcare institution, home health situation, etc. where they-unlike the doctor-could not just walk away.

These nurses were unaware that there were already nursing journal articles like “Assisted Suicide: What Role for Nurses?”  (2000) that quoted one Oregon hospice administrator:

“Initially, when the law was designed, the assumption was that physicians would be the first ones to explore PAS with patients…but in reality, nurses are usually the ones in the line of fire.

While Compassion and Choices leaders now talk about “integrating” and “normalizing” assisted suicide in end of life care , this 17 year old article already stated that “Much of nurses’ roles lies behind the scenes long before the drama of PAS unfolds. Home care and hospice nurses actively help patients understand their rights, acting as advocates for those who are considering PAS.” (Emphasis added)

Now, two recent articles expose the lengths that assisted suicide activists will go to  legally bully health care professionals to participate in medically assisted suicide.

VERMONT

In an April 5, 2017 article titled “This State is Trying for Force Doctors and Health Care Workers to Give Patients Info on Assisted Suicide”, the Alliance Defending Freedom organization  filed a lawsuit against Vermont’s Act 39, arguing that

“Vermont’s Act 39 makes the State the first and only one to mandate that all licensed healthcare professionals counsel terminal patients about the availability and procedures for physician-assisted suicide, and refer them to willing prescribers to dispense the death-dealing drug. Act 39 coerces professionals to counsel patients about the ‘benefits’ of assisted suicide—benefits that Plaintiffs’ members do not believe exist—and in addition stands in opposition to a federal law protecting healthcare professionals who cannot participate in assisted suicide for conscientious reasons.” (Emphasis added)

CANADA

In a stunning March 28, 2017 Canadian Catholic Register article titled “Doctors being ’bullied’ over assisted suicide, legislators told at Bill 84 hearings” , doctors in Ontario, Canada spoke out about “being bullied, silenced and coerced in a pro-euthanasia environment which is forcing those who object to medically assisted suicide to provide an “effective referral” for patients who wish to die”. (Emphasis added)

Dr. Jane Dobson testified about the pressure she has faced: “If I don’t comply, I face fines and the possible suspension of my license.”

University of Toronto School of Medicine professor Dr. Maria Wolfs added that medical schools are facing pressure to “weed out students who might object to assisted suicide”. (Emphasis added)

Psychiatrist Dr. Janice Halpern testified that the policy is also “at odds with the subtleties of a psychiatric doctor-patient relationship and asked how long can a psychiatrist work with a patient “on finding their will to live again” before referring the patient for assisted suicide.

The Canadian Supreme Court legalized physician-assisted suicide in 2015 and as of the end of 2016, at least 744 people have died from physician assisted suicide with Ontario having the highest number.

One doctor who assisted the suicide of at least 40 patients in 2016 said that those numbers will increase “to the point of the Netherlands and Belgium because their laws are similar to ours, and that would mean about 5 % of all deaths.”

UNEXPECTED CONSEQUENCES

Ironically, there has been an unusual backlash in Canada.

According to a February 2017 article in Canada’s National Post newspaper , an increasing number of doctors performing assisted suicide are now saying “‘Take my name off the list, I can’t do any more”.  As the article states:

“In Ontario, one of the few provinces to track the information, 24 doctors have permanently been removed from a voluntary referral list of physicians willing to help people die. Another 30 have put their names on temporary hold.”

And

“The Canadian Medical Association says reports of doctors backing away from the act are not just anecdotal. “I can’t tell you how many, but I can tell you that it’s enough that it’s been noted at a systemic level,” said Dr. Jeff Blackmer, the CMA’s vice-president of medical professionalism.”

CONCLUSION

Groups like Compassion and Choices depend on assisted suicide being portrayed as a victimless and necessary medical intervention while, at the same time, they oppose conscience rights for ethical doctors and nurses trying to help and protect their patients and their professions.

However, it is hard to escape the reality that legally forced participation in medically assisted suicide damages the health care system, health care providers and even patients.