The Catholic Church, Experimental Treatments and Charlie Gard

A disturbing statement made by Archbishop Vincenzo Paglia, head of the Vatican’s Pontifical Academy for life, appearing to support the European Court of Human Rights decision to reject Baby Charlie Gard’s parents’ request to go to the US for an experimental treatment for their critically ill son struck a nerve with many Catholics. And although Pope Francis quickly expressed his support for Baby Charlie and his parents shortly after the statement, the ethical issue of experimental treatment remains confusing to many people, Catholic or not.

But what has the Catholic Church really said about experimental means?

VATICAN STATEMENT ON EUTHANASIA

Perhaps the best guidance can be found in the 1980 Vatican Statement on Euthanasia that states:

“If there are no other sufficient remedies, it is permitted, with the patient’s consent, to have recourse to the means provided by the most advanced medical techniques, even if these means are still at the experimental stage and are not without a certain risk. By accepting them, the patient can even show generosity in the service of humanity. – It is also permitted, with the patient’s consent, to interrupt these means, where the results fall short of expectations.” (Emphasis added)

The document further explains that:

But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient’s family, as also of the advice of the doctors who are specially competent in the matter. The latter may in particular judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques. (Emphasis added)

This is a common sense and balanced approach that was not controversial in 1980 and should apply in Baby Charlie Gard’s situation, especially since there is apparently disagreement among doctors about the experimental treatment.

TWO CASES OF EXPERIMENTAL TREATMENT

When I worked with cancer patients in the 1980s and 1990s, I especially remember two patients who decided to try experimental treatments.

One was an older woman whose cancer had spread to her brain. A new drug had been developed that would have to be administered via an access implanted in her head. She desperately wanted to spend more time with her family and was willing to try the drug despite the potential side effects and poor chance that the drug would work.

Initially, the drug did make her worse and she was near death. Three times we called her family to come in because death was imminently expected and she was in a coma.

But she surprised us all by recovering and two years later was still doing well without any recurrence of the cancer. The doctors were astounded.

In another case, a man in his 40s with two sons also decided to be part of a clinical trial of a new drug for his cancer. Some of my colleagues questioned why he would take on such a challenge so I talked with him. He said that he accepted the fact that he was probably going to die of his cancer but he wanted to try the drug not only in the hope that it would benefit him or others like him but also because he wanted his sons to know that he fought to live and be with them.

Although this man died, he left a brave legacy of love to his boys.

CONCLUSION

It is important to understand that medical progress and technological marvels often happen because doctors, patients and family persist in trying.

For example, it wasn’t that long ago that AIDS was considered incurable. Experimental drugs did not work at first but later ones did and now AIDS is no longer an automatic death sentence.

Baby Charlie’s parents worked hard to find a potential treatment and even raised the money to transport their son to the US. The hospital’s decision to usurp the parents and unilaterally remove Baby Charlie’s life support has led to an outpouring of support for Baby Charlie and his parents.

Let us hope that this latest court appeal will reverse the hospital’s decision and help restore the rights of parents reasonably trying to help their children

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.