Talking to Patients

As I have related before, back in the early 1970s when I was a new ICU nurse, I was teased for talking to comatose patients. I was even asked if I talked to my refrigerator. I explained that if hearing was truly the last sense to go, it made sense to talk to the patients and explain what we were doing just as we would for any other patient. The other nurses thought this was ridiculous-until “Mike”.

“Mike” was a 17-year old boy who was admitted to our intensive care unit in a deep coma with massive injuries caused by a terrible car crash. The neurosurgeon on duty pronounced, “He won’t live until morning and it’s a good thing, because he’d be a vegetable.” I was shocked that he said this in front of “Mike”!

But “Mike” didn’t die. I kept talking to him and eventually he could even move a finger on command. But he would not respond to the neurosurgeon, even with tests to see if he would move with pain stimuli.

Later on, when “Mike” was able to breathe on his own, he would even say “Hi” for me on command but it was only after I repeatedly begged that Mike finally said “Hi” to the neurosurgeon. The neurosurgeon called this a “miracle” but shortly after that, Mike was transferred to a nursing home. None of us ever expected to see him again.

However, about 2 years later, a handsome young man strode into our ICU and asked “Do you remember me?” It was Mike! He said he had driven 60 miles to tell us thanks for saving his life and we all dissolved in happy tears.

I told him that he wouldn’t remember this, but he would move and say “Hi” for us nurses but not for the neurosurgeon. Mike got very serious and said “I remember him calling me a vegetable and I wouldn’t move for him!

After that, every nurse on our unit was told to talk to every comatose patient as if he or she was totally awake and soon we found more patients who unexpectedly woke up or improved.

And no one ever teased me about talking to “comatose” patients again.

Throughout the decades since, I have talked to other patients who were considered comatose or otherwise unconscious, not just to patients with a major brain injury but also to patients approaching death and to patients sedated while on a ventilator for breathing. I’ve always considered this talking and explaining just basic respect for every patient. I was pleasantly surprised when I followed up with patients and families after they left our ICU and found many who remembered and told me how much this had helped them.

“OBSERVATIONS FROM ICU PATIENTS WE THOUGHT WERE ASLEEP, BUT WERE NOT”

So I was thrilled to see this title for a new Journal of the American Medical Association (JAMA) learning audio for doctors with stories from patients about what they experienced in an ICU while their treating doctors and nurses thought they were “asleep”.

In the audio, most of the patients were on sedation while on a ventilator and assumed unaware. One such woman related how she became so angry at her doctor’s attitude that she wanted to throw something at him and was frustrated when she couldn’t. Another man related how painful it was when the electrodes checking for his level of sedation were used without explanation or warning. Another complained about hearing nurses talking about her mom and dad poorly and their lack of empathy.

But there were also good stories about nurses or doctors taking the time to explain what was happening, talking as if the patient could hear everything and helping patients communicate without words. One doctor told about how his own father was in a hospital for an extended time and his dad remembered hearing the doctor talking about all the things he couldn’t do instead of what he could do. This doctor says that his father’s discouraging experience made him a better doctor.

The audiotape also explains how difficult it can be to not over- or under-medicate people, especially when it comes to pain, confusion and anxiety. The audiotape recommends that health care professionals try to avoid long acting drugs with potential side effects and continuous medication infusions and to use simple tools to assess delirium, confusion and anxiety.

The audiotape also recommends that health care professionals “treat patients like real persons”, “take the time to explain”, “be careful to assess level of awareness”, “realize that every action and word have real consequences” and that the “human element” is the most important.

CONCLUSION

Being in an ICU can be especially stressful for patients and their families and I hope this information is helpful. Medicine can do wonders today but it is the human connection that provides the best environment for healing for both patients and their families.

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.

 

 

What You Need to Know About Medical Abortion and Abortion Reversal

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

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

Planned Parenthood and other abortion groups are not pleased.

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

THE PROMOTION AND CHANGING CRITERIA FOR MEDICAL ABORTION

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

But as even Dr. Kovacs admits:

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

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

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

CONCLUSION

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

And that:

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

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

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

Defending Physician-assisted Suicide

In a recent letter to the editor in the Wall Street Journal,  Dr. David Grube, national medical director of Compassion and Choices, defended physician-assisted suicide by stating:

“I knew that the people who requested it didn’t want to end their life. They loved life but realized they had an incurable, terminal disease and didn’t want to suffer needlessly as the inevitable end of life approached.

The proof is that more than one-third of terminally ill Oregonians who obtain the medication never take it, but they get great comfort in knowing they have access to it if they need it, which helps them suffer less.” (Emphasis added)

Is this really the crucial argument to upend our medical and legal ethics to legalize physician-assisted suicide?

Especially when more than 33% of people approved for assisted suicide don’t use the lethal overdose prescriptions, this should be a wake-up call for assisted suicide activists as well as suicide prevention groups and the rest of society.

As a former oncology (cancer) and hospice nurse who cared for many terminally ill patients including relatives over decades, I encouraged my patients and family members to talk about all their concerns. I found very few who wanted to end their lives out of fear of future suffering. I  reassured my patients and relatives that we would make them as comfortable as possible and support them until their natural death. Not one died by suicide and all died with true dignity.

But this was before physician-assisted suicide began to be legalized, glamorized and  promoted by activists, especially through sympathetic media outlets.

WHERE IS THE FOLLOW UP ON THE PATIENTS WHO DON’T TAKE THE LETHAL OVERDOSE?

What happened to these patients who decided not to take the lethal overdose? Did they unexpectedly improve or find their symptoms adequately treated? Was the terminal diagnosis wrong? Did they find the physical, emotional and spiritual support to continue living?

Unfortunately, those writing state assisted suicide reports are apparently not interested in this important information that could help save other lives.

WHAT HAPPENS TO THE UNUSED LETHAL OVERDOSE?

Another concern is what happens to the lethal overdose that the patient does not take?

In any home health situation, every unused dose of a controlled medication must be accounted for and disposed of carefully. We know how important it is to keep such medication out of a child’s reach or from misuse by a family member or friend. Keeping overdoses for possible future ingestion is obviously dangerous, especially when our nation is in the middle of an opioid crisis that now kills almost 100 Americans every day.

However when it comes to unused lethal overdoses in assisted suicide, Death with Dignity’s advice is that:

“Anyone who chooses not to ingest a prescribed dose or anyone in possession of any portion of the unused dose must dispose of the dose in a legal manner as determined by the federal Drug Enforcement Agency or their state laws, if any.”

CONCLUSION

When even assisted suicide supporters admit data suggests that the “distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life” but claim that the more than 33% who don’t take the prescribed lethal overdose should still have it to supposedly “get great comfort in knowing they have access to it if they need it”,  physician-assisted suicide is further exposed as a terrible response to human fear and despair.

As our National Association of Pro-life Nurses states, patients need us to take their hands, not their lives.

 

Can There Really Be a “Safer” Physician-assisted Suicide?

In August, I wrote a blog “Physician-assisted Suicide and the Palliative Care Physician”  about Dr. Jessica Nutik Zitter,  a palliative care doctor in California who approved of physician-assisted suicide, would want it for herself but had still had serious some qualms about actually writing for the lethal overdose herself.

In the end, Dr. Zitter decides that assisted suicide can be rendered “safe” by being rare and practiced by specially trained medical practitioners as “just one tool in the toolbox of caring for the dying-a tool of last resort.”

Thus, Dr. Zitter, perhaps unknowingly, gives support to the Compassion and Choices goal of “normalizing” and “integrating” physician-assisted suicide into standard medical practice. Note  their own description of their activities:

“We help clients with advance directives, local service referrals and pain and symptom management. We offer information on self-determined dying when appropriate and provide emotional support through a difficult time. We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals. Compassion & Choices devotes itself to creative legal and legislative initiatives to secure comprehensive and compassionate options at the end of life.” (Emphasis added)

Now in her new article “De-Medicalizing Death”, Dr. Zitter is excited about a new University of California, Los Angeles (UCLA) Health Centers’ program where “only” 25% of patients went on to commit physician-assisted suicide after an “intake process…conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians”.

Ironically, current physician-assisted suicide laws tout the “safeguard” that “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.” (Emphasis added),  But that only means evaluating a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required. Thus, it should not be surprising that only 3.8% of people using physician-assisted suicide in Oregon were even referred for psychiatric evaluation in 2016, unlike the standard of care for other suicidal people.

Also, the UCLA new intake process for physician-assisted suicide that so excites Dr. Zitter paradoxically undermines the common media depiction of a terminally ill person in unbearable pain desperate for immediate relief:

“The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.” (Emphasis added)

And

“Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer”. (Emphasis added)

And, I would add, this “game-changer” ultimately resulted in most patients NOT dying by assisted suicide.

As a former hospice and oncology nurse, this kind of listening and support is very familiar to me. We gave our patients such care along with symptom control and our patients died with real dignity with their families supported as well.

Personally, I was never even once tempted to help end any of my patients’ lives.

CONCLUSION

Dr. Zitter is like many people. The idea of controlling one’s own death or avoiding watching a loved one slowly die is very seductive. But, as Dr. Zitter has unwittingly discovered, suicide is the loneliest kind of death and very amenable to intervention.

On the other hand, the legalization and approval of physician-assisted suicide reinforces the underlying despair that leads even many healthy people to think death is the solution to their problems.

When “Losing autonomy” and “Less able to engage in activities making life enjoyable” are the top two end of life concerns of Oregon’s assisted suicide victims in 2016, we have a bigger societal problem than an alleged lack of enough lethal overdose prescriptions.

We need true caring and support, not abandonment to suicide of any kind.

“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”.

 

“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.

Canada and Assisted Suicide for Psychiatric Patients

My first husband and the father of my children was a caring man and dedicated psychiatrist who himself eventually became disabled by mental illness. Early in our marriage, I helped him write his medical journal articles and we planned to eventually include me in his psychiatric practice to work with the families of his patients. As a nurse, I always believed that families were ideally the best support system for patients and our goal was to improve the care and outcomes of people with mental illness.

Tragically, my husband’s mental illness worsened despite intensive treatment. He ultimately abandoned our family and lived the next 26 years in and out of hospitals and assisted living places before he died of natural causes in 2014.

Thus I have a unique perspective on the legal, medical and personal aspects of mental illness.

At one point, a family member sympathetically suggested that it might be better for everyone if he committed suicide. I was horrified. You don’t give up on sick people and I told this person that I would do anything in my power to stop him if he tried to kill himself. Suicide would be the ultimate tragedy.

Canada and Its New Assisted Suicide Law

In February 2015, the Canadian Supreme Court ruled unanimously in the Carter v. Canada case to legalize physician-assisted suicide for competent, consenting adults whose suffering is due to a “grievous and irremediable” medical condition and gave Parliament a year to develop a regulatory regime along these “parameters.”

The Parliamentary Special Joint Committee on Physician-Assisted “Dying” suggested that the “grievous and irremediable” criterion includes nonterminal medical conditions, including psychiatric disorders.

The federal government’s Bill C-14, on the other hand, defined “grievous and irremediable” as an “advanced state of irreversible decline in capabilities” in a person for whom “natural death has become reasonably foreseeable.”  The Senate ultimately passed the bill but the controversy about assisted suicide for psychiatric patients is still raging.

In a June 21, 2016 commentary in the Canadian Medical Association Journal “Should assisted dying for psychiatric disorders be legalized in Canada?”, authors Scott Y.H. Kim MD PhD and Trudo Lemmens LLM DCL warn against this.

As they note:

In Belgium and the Netherlands, medical assistance in dying has been provided to people with chronic schizophrenia, posttraumatic stress disorder, severe eating disorders, autism, personality disorders and even prolonged grief.

The authors conclude that:

Because of the necessarily broad criteria used to regulate assisted dying (in Canada), legalizing the practice for psychiatric conditions will likely place already vulnerable patients at risk of premature death.

However, others like Belgium psychiatrist Joris Vandenberghe, MD, PhD disagree:

“I think the current approach taken by the Canadian government is a bit too strict because it doesn’t fully recognize the enormous impact that psychiatric disorders can have on patients,” Dr Vandenberghe told Medscape Medical News. (Emphasis added)

However, even Dr. Vandenberghe recognizes the problems while still calling for more “safeguards”:

“I am generally not opposed to our euthanasia legislation and agree that patients suffering from psychiatric conditions should not be excluded from our legislation. However, extra precautions are urgently needed.

“I’m not happy with the way things work here [in Belgium]. Sometimes euthanasia is used with insufficient reluctance on the part of the healthcare professionals involved. We’re missing opportunities for treatment, and we need more safeguards,” said Dr. Vandenberghe.

So for me, the answer lies in a thorough evaluation of a patient prior to euthanasia. There really is no time pressure in psychiatric disorders, and if you have a multidisciplinary committee involved in the evaluation, you can take care of lot of the concerns we now have about euthanasia in the setting of psychiatric illness.”

The reality is that very few psychological or psychiatric referrals are even now made for anyone considering assisted suicide either in the US or in Europe. The answer is not more “safeguards” for assisted suicide practitioners to disregard while enjoying virtual legal immunity but rather an emphatic “No!” from the public as well the legal and medical systems. We also need an unbiased media to publicly expose the real facts about legalized medical killing.

 Conclusion

I have seen both the legal and medical systems often fail people with mental illness like my ex-husband who desperately need treatment and safety.

On the medical side, I begged for direction from my ex-husband’s doctors about what I could do to help him but I was told that there was nothing I could do or not do since the doctors were seeing him regularly. I was not allowed to even know his diagnosis without his permission.

On the legal side, I had problems getting supervised visitation even after a hostage situation.  Due to almost constant harassment, I had multiple orders of protection violated without adequate legal response. And despite being on mental illness disability, my ex-husband was allowed to file and lose several frivolous lawsuits-until he ran out of money.

It was a heartbreaking situation.

However, I always hoped that my ex-husband would improve so that he could at least have a better relationship with his children. Even though that did not happen, I am grateful that he did not die by suicide, assisted or otherwise.

Unfortunately, my family’s experience is not unique among families with a member who is mentally ill.

If our medical and legal systems are already often failing people with mental illness and their families, how can we allow them the power to “assist” our loved ones’ suicide?

That would be the ultimate betrayal of an already stigmatized and vulnerable group of people.

Why Are Suicide Rates Climbing after Years of Decline?

After years of declines, the US suicide rate rose 24% over 15 years according to a new report from the national Centers for Disease on suicide rates in the US from 1999-2014.  The suicide rate rose for everyone between the ages of 10-74 between 1999-2014.

National media like the Wall Street Journal  and CNN   speculated that the economic downturn, drugs and lack of mental health resources could be factors in the 24% increase.

However, one huge factor was totally ignored: the legalization and promotion of physician-assisted suicide.

The Legalization of Physician-Assisted Suicide and Suicide Contagion

It must not be dismissed as mere coincidence that the new rise in suicides correlates to the implementation of the first physician-assisted suicide law in Oregon.

A 2012 report on suicide trends and risk factors for the Oregon Health Authority found the state’s overall suicide rate had risen 41 percent higher than the national rate . This is the “regular” suicide rate. Physician-assisted suicides are not included.

Since Oregon, four more states (California, Vermont, and Washington) have legalized physician-assisted suicide via legislation with a Montana supreme court ruling in favor of assisted suicide but without a regulatory framework. But it is only now that the media is noticing a suicide rate that has been increasing for 15 years.

There is a well-known and recognized suicide contagion effect after reported suicides. Both national media guidelines   and  World Health Organization guidelines   warn against media glamorization or normalization of suicide by the media that could lead to more suicides.

Yet, since the legalization in Oregon, the media has become increasingly positive in reporting on physician-assisted suicide. This reached a peak when People magazine devoted it cover story  and some subsequent issues to Brittany Maynard , her impending assisted suicide, and her Compassion and Choices led foundation to raise money to promote the legalization of physician-assisted suicide throughout the US.

That’s not just glamorizing or normalizing physician-assisted suicide. That’s advertising.

And it is having an enormous effect. Now the media is bowing to the pro-assisted suicide movement’s propaganda by changing even the terminology. Instead of physician-assisted suicide, news reports now use more soothing terms like “death with dignity”, “aid in dying” or “physician-assisted death”.

Make no mistake. This is a calculated tactic to increase support of physician-assisted suicide by denying reality.

Why Don’t  Physician-Assisted Suicide Laws Require Psychiatric or Psychological Evaluation?

As most of you may know,  I am the mother of a physically healthy 30 year old daughter who killed herself in 2009 using a technique the medical examiner called “textbook Final Exit”, the title of a book she read by assisted suicide supporter Derek Humphry. But I am also an RN with 46 years of experience who has cared for terminally or seriously ill people considering even physician-assisted suicide who changed their minds after suicide prevention and treatment interventions.

I am appalled that no physician-assisted suicide law actually requires a psychiatric or psychological evaluation before a person is given the lethal overdose prescription. For example in Oregon, the physician-assisted suicide law only states 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.”   (Emphasis added)  Not surprisingly, very few such evaluations are currently done, according to Oregon’s annual reports.

That stands in stark contrast to the standard evaluations given to other suicidal patients.

There must be no medical discrimination based on a predicted  prognosis when it comes to standard suicide prevention and treatment interventions. Suicide for any reason is always a tragedy to be prevented when possible.

The terrible despair that leads to suicide must not be ignored in favor of a cold piece of paper with a lethal prescription.

 

 

Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia

My mother developed Alzheimer’s disease, the most common type of dementia, in her early 60s. Later on, she was diagnosed with an aggressive thyroid cancer that required a surgical opening in her throat called a tracheostomy so that she would not suffocate from the tumor. My father and siblings were naturally distraught and overwhelmed.

I was 38 years old at the time and a suddenly single mother with 3 young children. My youngest daughter Joy was 2 years old and in diapers. My family looked to me for help.

As a nurse, I thought I knew the challenges of caring for someone with Alzheimer’s as well as someone with cancer and I was glad to use that knowledge to care for my mother. But, especially at first, it wasn’t easy.

Mom would ask the same questions over and over, have episodes of hostility and paranoia and periodic insomnia. She also became adept at thwarting the safety measures we used to protect her.

Then, one day near the end of my mother’s life, I sat on a sofa holding hands with both Joy, now over 3 years old, and my mom watching Sesame Street on TV. I was struck by the fact that both of them had the exact same expression of happiness on their faces. It was then that I realized how far we all had come and how much I had learned.

FIVE THINGS MY MOTHER AND MY DAUGHTER TAUGHT ME ABOUT:

1. Getting things done

I soon realized that both my 2 year old daughter and my mother responded best to one direction at a time and the patience to wait until one action was completed before directing another action.

For example, instead of just saying “brush your teeth” and trying to hurry the action along, directing both of them on just one step at a time time ultimately saved both time and frustration on everyone’s part.

I also found that set routines were comforting to both my mother and daughter despite their obvious differences.

2. Answering questions

Like most people caring for a relative with dementia, I found that answering the same question from my mother over and over again was exhausting. Answering different but incessant questions from my daughter was also difficult at times. So I learned the technique of distraction. For example with my mother, I would interest her in another activity such as folding laundry with me. With my daughter, I would often ask her to “read” a book to me. Judiciously used, this kind of pivot would relieve the increasing tension and make both of them happy.

3. Attitude

I made sure to smile often and establish eye contact with both my mother and my daughter. I would work my name into the conversation when I could see my mom trying to remember who I was and I made sure to often say “I love you” and praise the efforts of both my mother and my daughter. I made sure each had my full attention at that time even when I was in a hurry myself.

4. De-escalation

I found that both people with Alzheimer’s and 2 year olds are prone to sudden meltdowns that are difficult to handle. I discovered that watching for increasing agitation, frustration or the need for a nap and taking preemptive measures could often calm the situation before tempers flared out of control.

5. Music

I always found it fascinating that people with late-stage Alzheimer’s, even those who were rarely verbal, would often start singing when they heard a song they knew. The same is true with young children who naturally delight in songs. Our sing-a-longs were great fun for both my mother and my daughter. “You Are My Sunshine” was a special favorite. My daughter Joy is now an adult and a music teacher.

Best of all, my children still have fond memories of their grandmother after almost 30 years.

A FINAL STORY

This year, some married friends of ours buried the wife’s beloved mother who had Alzheimer’s. They and the rest of the family had worked together to take wonderful care of the mother at home as long as possible and in the nursing home where she finally died.

As the mother’s Alzheimer’s progressed to a later stage, she started to have vivid hallucinations.

One day, the couple made plans to take the mother to her favorite restaurant but she refused to go without the “two little girls over there.” The wife started to tell her mother that she was having hallucinations but her husband gently stopped her. Instead, he told the mother that the little girls weren’t hungry. The mother smiled and immediately got up to go to the restaurant.

The wife later asked me if it was OK to “lie” to her mother. I told her that her mom would probably have been embarrassed and upset to hear that she was having a hallucination. She might have even argued about it.

On the other hand, her husband’s response was both kind and respectful of her mother’s dignity. And, technically, those “two little girls” could not be hungry because they were not real.

To me, that kind of loving attitude from both these friends is inspirational. I wish that it was universal.