Compassionate, informed advice about healthcare decision making

Archive for June, 2021

New Drug to Help Alzheimer’s Patients? I Think Not!

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What are they thinking? How can the government approve a drug unlikely to improve the lives of any dementia patients?

I am not a doctor, but I have been around dementia patients my whole professional career as a nursing home and hospice chaplain. I also have been a co-caregiver for both my parents who died suffering from memory loss: Dad from Parkinson’s and strokes and Mom from Alzheimer’s.

I read about this new Alzheimer’s drug, Aduhelm, in newspapers and medical journals and was saddened by the recent approval of the drug. It was approved by the FDA even though there is no evidence it helps patients. An outside panel of experts voted against approval. Three of that panel’s members have now quit in protest.

What was the reason for them to recommend AGAINST approval? The patients in the clinical trial showed no improvement. Some did appear to have reduced amounts of amyloid clumps in the brain which are often found in Alzheimer’s patients. But less clumps in the brain have not been proven to lead to improved cognitive functioning.

The drug is extremely expensive for both the patient and Medicare, over $50,000 a year. Its use requires many PET scans, also extremely expensive. All this for a drug that shows no evidence of improving the life of the patient.

If you or someone you love has Alzheimer’s, don’t listen to me. Talk to your own doctor. But I suggest reading the criticisms about Aduhelm before making a decision on it.

Think of making this decision like you would with any other medical treatment. Do the benefits outweigh the burdens? In this case, there appears to be no benefit and quite significant burdens both financially and clinically.

Who can blame demented patients or their families for wanting to try something — anything — that might slow the losing of one’s mind? This drug is not one that offers such a promise.

Might the $50K be used for something that we know already helps patients or caregivers? What about respite care to give the family a break or in-home health aides? How about expanding Medicare coverage for palliative care for dementia patients?

Do these patients and families need hope? Absolutely! But not false hope. While the medical research continues, let us offer compassion and support to these patients and their families. May their burdens be eased by ways in which we already know the path.

“Mrs. Smith, here is your pain pill.” She Lied

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Is it ever okay to lie? Can lying be helpful at times?

Let me think about that.

I was sitting at the nurse’s station in the nursing home where I was chaplain. The most competent and compassionate charge nurse pulled a pill out of someone’s med drawer and said, “I know this is unethical, but I HAVE to do something for this patient.”

She was in what we call “moral distress”—being forced to do something she knew, in most circumstances, was wrong. The patient was in increasing amounts of pain, and the doctor had prescribed a narcotic we did not have in our in-house pharmacy. Delivery could take hours, and the patient was often on the call bell begging for relief from her pain.

So, the nurse rummaged through other patients’ meds and found a vitamin pill. She took the pill to the suffering patient and said, “Mrs. Smith, here is your pain pill.” Within minutes the pain was gone. This is the well-known and much-studied “placebo effect.” It is real, and it provided this patient what she needed.

Medical ethicist Howard Brody has called the placebo, “the lie that heals.”

I just finished reading two books that explore the placebo effect. One is Useful Delusions: The Power and Paradox of the Self-Deceiving Brain by Shankar Vedantam and Bill Mesler. The other is Suggestible You: The Curious Science of Your Brain’s Ability to Deceive, Transform and Heal, by Erik Vance.

“The placebo effect is often described as the effect of mind over matter. But it is actually about something much more powerful: the power of the drama and rituals embedded in the practice of medicine—a theater that involves (often at an unconscious level) deception on the part of the physician [or the nurse] and self-deception on the part of the patient.” (from Useful Delusions)

And this bit of theater acted out by this nurse unlocked the patient’s “Inner Pharmacy” in the words of Eric Vance. He goes on:

“Chronic pain responds exceptionally well to placebos. In fact, pain might be the signature placebo-prone condition in the world today.… Humans do have a form of homemade opioids called endorphins—our own little hidden opium dens tucked away in our brains.… Pain placebos work because the brain self-medicates with opioid drugs.”

The theater that unlocks the placebo effect

How does this work? Vance writes, “Two complementary ideas—suggestion and expectation—are at the heart of unlocking your internal medicine cabinet.” The patient expected to receive relief from the nurse giving her a pill. The nurse suggested this was the pill that was going to bring that relief. Bada boom, bada bing—the pain was gone.

The nurse played her role in the theater. She dressed like the nurse she was. She brought in the pill as she had done scores of times before. She spoke her line, “Here is your pain pill.” The patient responded to all that the acting suggested and expected to find relief. She got that relief from an opioid released by her own brain.

I’ll give the last word to George Constanza from Seinfield: “It’s not a lie if you believe it.”

“We Were Called to Sacrifice as a Nation. We Didn’t Answer.”

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Do we care? Really? Has our overinflated sense of personal freedom condemned us to fail as a society that cares for each other?

Last year, I wrote about my first experience wearing a mask in public. I realized in the moment of walking into the post office that I was donning the mask out of concern for others. Before Christmas, the same office displayed large black ribbons in honor of a postal clerk who had died of COVID. Did we, the patrons, give him the disease?

During this pandemic, we have all been called upon to make some sacrifices for the common good. Many have made great sacrifices — retail workers, first responders, and healthcare providers, to name a few. The call was much more modest for most of us — wash our hands, wear a mask, don’t gather in large crowds, and get vaccinated.

The call to sacrifice

Contributing opinion writer, Margaret Renkl, reflected on this call to sacrifice in her piece, “We Were Called to Sacrifice as a Nation. We Didn’t Answer.” The article was published in The New York Times this past Memorial Day, a day we remember those who sacrificed all for the common good.

She likened the novel coronavirus to a deadly enemy — not unlike the fascists we confronted and defeated in World War II. My father and millions of men and women in his generation answered the call to join that fight. There was no question that he would go. It’s what that generation did. Our nation depended on those who were willing to sacrifice.

Renkl suggests this sense of national sacrifice was squandered in the Vietnam War. Not only were we misled by our government about the imagined progress of the war effort, but the sacrifice fell mainly on the poor and minorities who could not avoid the draft.

I was fortunate enough to attend college at that time and so was deferred from the draft. But I kept a constant eye on my draft status, wanting to avoid the fate of the others who died in our losing effort.

The false idol of personal freedom

Many feel the call to wear a mask or get a vaccine violates their personal freedom. Rep. Jim Jordan of Ohio put it this way in a congressional hearing in April, “‘Dr. Fauci, when is the time?’ Jordan kept asking. He wanted to know when it was ‘time to pull back on masking’ and ‘physical distancing.’ ‘When do Americans get their freedoms back?’” The Washington Post

Excuse me? We had (and still HAVE) the opportunity to save the lives of tens of thousands of our fellow citizens by wearing masks and getting vaccinated. Why wouldn’t we?

Many choose not to because of “freedom.” What is missed by so many who refuse these simple measures for the sake of freedom is that we do them mainly to protect others, not ourselves. To get to herd immunity, we must have enough of the herd answering the call to “sacrifice” by getting a shot or two.

Renkl’s article also touches on another huge issue of our time: climate change. The loss of a sense of the common good here has an even greater impact on our world. In this case, instead of the elderly and medically at-risk, the others we are protecting by addressing global warming are our grandchildren and great-grandchildren. Are our “personal freedoms” more important than they are?

There’s No Crying in Golf!

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I never thought I would tear up watching a golf tournament on TV. But I did.

I’m not a golfer, but I AM a sports fan. I was drawn to the possibility that a major golf tournament was about to be won by an almost 51-year-old Phil Mickelson. Such a feat would make him the oldest player ever to win one of the “Majors.” To put this in perspective, the ages of the last four winners of this event were 23, 29, 28, and 24.

So, I turned on the PGA Championship being played on The Ocean Course at Kiawah Island, SC. He was doing it.

Sensing something historic was about to happen, the gallery was getting raucous. As Mickelson walked up the 18th fairway, his brother as his caddy with him, victory now seemed likely. Yes, he still could have blown it. But he didn’t. His second shot, from just off the fairway, made it to the green.

The crowd could be held back no more. The huge throng pressed around him, covered the fairway and threatened to engulf the players and caddies. Security personnel barely regained control.

Seeing that press of humanity brought tears to my eyes.

But golf is so trivial

A golf tournament is so trivial in the grand scheme of things — even one of historical significance.

The days following the PGA Championship marked the first anniversary of George Floyd’s death and the 100th anniversary of the Tulsa race massacre, where hundreds of Black folks were killed by White mobs. These are tragedies that should bring tears to all our eyes.

Yet, sports provide a welcome distraction from the harsher aspects of life, such as what are (hopefully) the last days of this pandemic. For some, it is hockey playoffs or the NBA playoffs, both currently on TV. For me, those last few holes of golf provided some introspection as I thought about where my tears were coming from.

Was it grief?

Grief has a funny way of sneaking up on you when you least expect it. My thoughts did go to my wife’s mother, Sue, who died last year. She loved, loved, loved watching golf on TV. If we called while a tournament was on, she would pick up the phone and say, “I’m watching golf. Call me back later.” *Click*

She would have been glued to the TV watching Mickelson’s unbelievable win. But it was not primarily thoughts of Sue that brought a tear to my eye.

Look at the joy

My tears were also not so much about an older guy becoming an unlikely winner. It was the crowd. “Look at the joy,” I thought.

We have spent more than a year watching sporting events, concerts, church services, holiday events, and other celebrations with no crowds. Kiawah Island was the ideal venue for such a large gathering at the tail end of the pandemic — outdoors with 22-mile-an-hour winds. Widely available vaccinations couldn’t hurt, either.

If you asked those closing in on Mickelson on that 18th fairway why they broke the lines, they might say they wanted to be a part of golf history. But I think after a year of being held back from experiencing the pure joy of such events they just couldn’t hold back any longer.

The joy. That is what my tears were about.

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