Month: June 2017

Baby Doe and Karen-35 Years Later

nancyvalko assisted suicide, disability, euthanasia, food and water, law, medical ethics, nursing

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

nancyvalko assisted suicide, Compassion & Choices, law, medical ethics, palliative care

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

nancyvalko medical

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

nancyvalko medical

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.