Compassionate, informed advice about healthcare decision making

Archive for the ‘Emotional & Spiritual Issues’ Category

You Can’t “Prevent” Alzheimer’s! But You Can “Reduce the Risk!”

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She was the most unhappy, most angry, and most sad dying person I ever worked with as a hospice chaplain.

She thought she had done everything to prevent cancer. She was a “fitness nut.” She meditated. She did yoga. She read books on spiritual and self-help topics. She ate the healthiest of diets. She got cancer anyway.

Once diagnosed, she turned to alternative medicine to save her life. She had heard so much about those miracle cures and she wanted that, too. She doubled down on her lifestyle she had adopted to prevent the cancer in the first place.

She never got to acceptance. In my view, her biggest mistake was believing she could “prevent” cancer rather than just “reduce the risk.” Even nonsmokers can get lung cancer.

Reducing Risk vs. Preventing

I thought of this patient as I was rereading an article I had found helpful about reducing the risk of dementia. I was surprised how it was titled — “The SHIELD Plan to Prevent Dementia.” (I referenced this “plan” in a previous blog about Alzheimer’s.) As with cancer, you can’t totally prevent getting Alzheimer’s. But you can reduce the risk.

Below is Dr. Oz’s spin on the research of Dr. Rudolph Tanzi (I would drop the word “prevent” and call it  The SHIELD Plan to Reduce the Risk of Alzheimer’s):

Sleep — Aim for at least eight hours of sleep each night.

Handle Stress — Tanzi recommends a short, one-minute meditation practice.

Interact With Others — Loneliness can lead to additional stress. Talking with friends and family members requires the brain to pay attention and builds new neural pathways.

Exercise — Walk at least three times a week for 30-45 minutes.

Learn New Things — “Leaning new skills can build new nerve connections that maintain optimal brain health. Try adopting a new hobby, learning a new language, or playing a new musical instrument.”

Diet — Drs. Oz and Tanzi recommend The Mediterranean diet. “On the diet, you’ll eat more fruits and vegetables, nuts and olive oil and then cut back on red meat consumption.”

There you have it.

Collective Effervescence — Welcoming Back the Joy in Crowds

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Laughter is contagious.

Years ago, I was standing at the front of a church leading a bride and groom through their vows on their wedding day. At some point, the bride started to laugh (was it at “for richer or poorer”? I don’t remember). Of course, the groom chuckled, I laughed, and the laughter spread to the congregation. We couldn’t help ourselves.

These thoughts came back to me as I read a recent article in the New York Times, “There’s a Specific Kind of Joy We’ve Been Missing.” Contributor Adam Grant is referring to the joy of being in crowds; a joy we did not experience during the worst of the pandemic.

Grant found this joy at a concert with 15,000 other fans. The same kind of joy I saw in the crowd pressing around Phil Mickelson at the PGA Championship. I talked about getting back together, in person, with my men’s group in one of my short “Hank’s Deep Thoughts” videos.

Here is a little of what Grant had to say about “Collective Effervescence”:

“Research has found that people laugh five times as often when they’re with others than when they’re alone. Even exchanging pleasantries with a stranger on a train is enough to spark joy.… Peak happiness lies mostly in collective activity.

“We find our greatest bliss in moments of collective effervescence. It’s…the sense of energy and harmony people feel when they come together in a group around a shared purpose. Collective effervescence is the synchrony you feel when you slide into rhythm with strangers on a dance floor, colleagues in a brainstorming session, cousins at a religious service or teammates on a soccer field. And during this pandemic, it’s been largely absent from our lives.”

And I would add, it is the collective effervescence you feel while laughing with a congregation at a wedding…even though you don’t know what the bride thought was so funny.

During the lockdowns we discovered that, indeed, “peak happiness lies mostly in collective activity.” You can binge watch comedy specials on TV, but it is nothing like physically being in a comedy club. Same goes for watching a movie at home versus joining others in a movie theater. Or participating in a Zoom church service as opposed to being in a room with your fellow worshippers.

Think about that — the content of each of these events is exactly the same: same jokes; same movie; same sermon and songs. Yet, experiencing them “together” makes a world of difference.

(The skeptic in me says crowds can be misled by false prophets or corrupt leaders. History — including current events — is replete with examples of these charlatans. Humor me and assume we are attending fun, positive, non-controversial events devoid of those who might lead us astray.)

When this pandemic has had its run, it will be a relief to finally be able to enjoy the best of an event with fellow humans by our side. To absorb each other’s energy. To do what we do best, by making a whole that is greater than the sum of its parts.

Our lives are not just enriched by the content we experience. Another key part is that “collective effervescence.”

Can I Trust the Russians? — Absolutely

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Would you trust someone who contacts you by email, claims to be from Russia, and wants to publish your book in their country? This happened to my publisher and me almost two years ago. Can we trust them?

Trust, but verify

I am reminded of a Russian proverb that Ronald Reagan was fond of quoting as he negotiated arms treaties with what was then the Soviet Union, “Trust, but verify.”

Twice before this, I was contacted by foreign publishers out of the blue requesting the same thing. As a result, Hard Choices for Loving People is now available in Japan and Taiwan.

You know — I am so thankful these people contacted us. They could have stolen my copyrighted material and published it without us ever knowing it had happened. I am sure there are international agreements that supposedly protect authors like myself. But if they were to publish without contacting us, it would be highly unlikely we would find out — and very expensive to try to stop them if we did.

We live in a state of trust

Come to think about it, we all live much of our lives in a state of trust. I occasionally find myself on a rural Mississippi two-lane, and suddenly, it dawns on me I trust those people in the other lane will stay in their lane. Or trust that people are going to stop at a stoplight as I go through the green. Or that the bank is going to keep my money. Or that the building I am in is not going to collapse.

The Russian Hospice Charity Fund that requested to translate my book seems like people I want to trust. From their website:

Someone who can’t be cured can still be helped.

The mission of Hospice Charity Fund is to make sure that every terminally ill patient in Russia has access to quality hospice care and pain relief – regardless of their age, financial and social status or place of registration.

Regardless of the differences we may have with other countries, on an individual basis, human compassion is universal.

So is trust.

 

The Collapse of Hope

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Here we are again. This time a beachside condo building near Miami has collapsed. Distraught families are praying for a miracle — praying that someone they love will be found alive. Others are only hoping for the recovery of a body so that they can say properly their goodbyes.

I write this five days after the tragic event. Much can change by the time you read this.

This tragedy feels familiar. Mass casualties in a seemingly random occurrence, like 9/11, mass shootings, or airplane crashes.

I remember writing a piece around September 11, 2002, a year after the terrorist attacks killed over 3,000 people. While I acknowledged that those deaths had huge implications for national security and our nation’s foreign policy, I disagreed with those who believed there to be some special meaning to the individual deaths. Those 3,000+ deaths were not unlike other random, sudden deaths I had seen countless times in my years in the ministry.

I admit, when things like this happen, I look for reasons why I am exempt from such randomness. I don’t own a condo on the beach in Miami. I don’t fly on airplanes in Africa. I don’t go to gay night clubs in Orlando. No wonder I am still living, and those unfortunate souls are not.

This doesn’t happen here

Even the mayor of the town where the condo high-rise is located sought refuge in the “this-doesn’t-happen-here” mentality.

“‘It would be like a lightning strike happening,’ said Charles W. Burkett, the mayor of Surfside, Fla., where the collapse occurred. ‘It’s not at all a common occurrence to have a building fall down in America,’ he said. ‘There was something very, very wrong with this situation.’” (New York Times, June 27)

Mr. Mayor, it does happen here. It DID happen here. And in your town, on your watch. (By the way, on average, 26 people die in the U.S. of lightning strikes each year.)

No trite platitudes for these stunned families

If I were called on to offer pastoral care for these worried families, I would try to meet them, and be with them, where they are in the process. If they were still praying for that most unlikely miracle that someone they love is alive — I can pray with them for that. If they had moved to mourning without a recovered body — I can be with them, too.

What I would NOT do is try to offer “solace” with such platitudes like, “God never gives you more than you can handle,” or “With God, there are no accidents,” or the absolute WORST, “Everything happens for a reason.”

So, once again, we all stand vigil. Indeed, most of us truly empathize with these poor families. We will watch with interest how they get through these coming days. Most will move into a normal, sad grieving process. An added pressure on these families, that most of us will never experience, is that many of them will mourn on national television. God help them.

 

 

“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.”

“If I had a daughter, I wouldn’t be in this nursing home!”

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The old lady was stuck with three sons. And because of this — in her mind — she was stuck in a nursing home.

Her sons visited. They met with the nursing home staff to make sure their mother’s needs were met. They were as good of family caregivers as I had ever seen in my years as a nursing home chaplain. But, more than once, she said, “If I had a daughter, I wouldn’t be in this nursing home.” The notion seems a bit old-fashioned in today’s world, where gender equality is such an important issue.

Well, it turns out she might have been correct.

A study reported in the current issue of the Journal of the American Geriatrics Society (JAGS) found that a patient was more likely to die at home (as opposed to in a hospital or nursing home) if you had more family members… especially more daughters.

The burdens of a family caregiver

Being a family caregiver at home is a tremendous burden. In the JAGS study, the average number of caregiving hours in the last month of life provided by the family to someone who dies at home is 210. For those who die in a nursing home or hospice inpatient unit, it is 81.

Interestingly, the emotional burden for families is highest when the patient dies in a hospital and lowest when they die at home. Perhaps the transfer to the hospital in itself is a great emotional strain. Guilt about NOT being able to take care of the patient at home must also be a factor. And though providing hands-on care can be a physical burden, it may give the caregiver the self-satisfaction that they are doing their best. The caregiver feels more in control.

What about the daughters? Why does having daughters make it more likely to die at home? Unfortunately, the study did not tease out why, but we can guess.

Right or wrong, the cultural norm in our society is that nurturing and caring for the young and elderly are duties more often performed by women. Yet, I have witnessed so many men who admirably performed caregiving duties to their elderly parents that I know men can be great caregivers. But in these cases, the men usually stepped in because there were no women available.

Who’s going to take care of mother?

Hank’s mother, Charlotte, after her move to Colorado, with her namesake great-granddaughter, Lia Charlotte

I saw this “Who’s-going-take-care-of-mother?” question play out in my own family. Mom had lived for years independently in a retirement facility in Tampa before moving into assisted living. My brother, sister, and I took turns visiting our mother. I like to think we each took about the same amount of time away from our work and families to serve as long-distance caregivers.

As our mother’s dementia progressed, it became clear that we needed to move her to a facility closer to one of us. We each visited memory care units near our homes in Tallahassee, Boulder, and Northern Virginia. Each of us was willing and able to become “the caregiver.” We weighed the quality and cost of the facilities we had found.

After we all had done our due diligence, my sister declared, “I want to do this. I want mom to come to Colorado.”

I called Janice last week to see if my memory of this decision-making process was the same as hers. “Yes,” she said. “I knew you and Dennis were quite capable of caring for our mother, but I was her daughter. There is a special bond between mothers and their daughters.”

And that was that.

Life at Fifteen Miles an Hour

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Last week, I whined about how having breaking news always at our fingertips has left little room to reflect on that news. This reminded me of a piece I wrote in 1993 for the newsletter at the nursing home where I worked. It was about riding my bicycle on the Outer Banks, slowing down, and discovering what I missed at sixty miles an hour.

“From the Chaplain: Life at Fifteen Miles an Hour,” July 1993

The rain started just as I set out on the first of four days of bicycling that would carry me 185 miles up and down North Carolina’s Outer Banks. I had driven my car from our rented house on the northern end to Avon — 33 bike-miles from Ocracoke at the southern terminus of the Outer Banks. Just as I was unloading my bike, the rain started.

It was 7:00 AM, and I had come too far not to ride. It was also July, so I wasn’t worried about being too cold. But, how often do I get to Cape Hatteras? If I didn’t start on that day, then my goal of riding the length of Outer Banks would be in jeopardy.

Let it go

I put on my rain gear and headed south. I fought the urge to turn around (“This is so stupid!”). Within fifteen minutes, I was soaked through and through, rain gear or not. I found I was much more comfortable being drenched than fighting to stay dry.

It was one of those “let it go” experiences. I figured I might as well give in and enjoy the scenery.

After an hour, I took off my parka and rain pants and peddled in what had become a light drizzle. By the time I reached the ferry bound for Ocracoke Island, the rain had ceased. I still had the bulk of that day’s ride ahead of me.

The distances between points on the map have a feel to them when you go by bike. Each day brought new stretches of highway. The old cottages at Nags Head and new resorts at Duck. The long distances of the Cape Hatteras National Seashore. On that day heading to Ocracoke, I got to know each village (Buxton, Frisco, Hatteras) as I passed through at fifteen miles an hour.

Are we really better going so fast?

I had vacationed several other times on these islands. But, I had never “experienced” them before like I did biking the entire length. You see and hear and feel a lot from riding a bicycle at fifteen miles an hour.

I could read historical markers that are only a blur from a car. (Did you know the first musical notes over the radio were broadcast on Cape Hatteras?) You can look pedestrians in the eye and say hello. Try that at sixty miles an hour.

What else do I miss by not slowing down?

Living in the D.C. suburbs of Northern Virginia sure makes a slower pace difficult. Are we really better because we pack so much into our days? My bike told me, “No, not necessarily.”

 

A REAL Newspaper — How I Miss It

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I actually touched a REAL newspaper last week. We were staying at a hotel across the river from Washington, D.C., and they gave us a FREE Washington Post. I could smell the newsprint and ink. My fingers started to take on an inky hue. I miss that feel and smell.

Hank’s father, Hampton Dunn (R), looks over his AAA newspaper as it is being printed

I grew up in a newspaper family. My father, Hampton Dunn, referred to himself as “only a newspaper guy.” He dropped out of college because he got his dream job as a reporter for the Tampa Daily Times, Tampa’s evening paper. More on my dad in a moment.

I still read newspapers every day: My former hometown paper, The Washington Post, and The New York Times. I find it curious that sometimes, when my wife asks me what I am reading on my phone, I say, “Reading the paper.”

Paper? It’s glass and silicon and plastic — no paper in it. These newspapers are no longer limited to a “final” edition with all the news that happened overnight. Now they update events “live” in real time.

The death of the daily newspaper

Like all major cities in the 1950s, Tampa had a morning and evening paper, the Tampa Tribune and The Tampa Daily Times, respectively. People stopped reading the evening paper because they could get the day’s news on network television. So, the Tribune bought the Times and dad was out of work — and out of the daily newspaper business.

He eventually became public relations director for AAA in Tampa and published their monthly Florida Explorer.Although many motor clubs were going with a slick magazine format, dad insisted on his being a real newspaper — on newsprint in a tabloid format. I remember him telling me, “When people get a newspaper in their hands it just feels like you have to read it now. It is NEWS. Not so with a magazine.”

He didn’t live long enough to have a phone that effectively begs you to READ THIS NOW, THIS IS NEWS. Where once it was in the paper morning and evening, now the breaking news is constant. I miss the slower pace of news.

Are we better?

Am I better because I know news sooner? Have we lost the ability to ponder what we have read simply because there is ALWAYS something new? And what else could I be doing if I am not reading the latest on my phone? Reading a book? Praying? Meditating? Talking to my family or friends? Walking out of doors?

In 1854, Henry David Thoreau cast a critical eye on newspapers and news at the post office. He wrote, “We must learn to reawaken and keep ourselves awake, not by mechanical aids, but by an infinite expectation of the dawn, which does not forsake us in our soundest sleep.” And further, “Our inventions are wont to be pretty toys, which distract our attention from serious things.”

Poor guy. He didn’t have an iPhone.

Looking for a Sign… Calming Amidst Grief

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I had NEVER seen a street sign like it – “TRAFFIC CALMING AHEAD” – and I collect photos of unique street signs.

Like the one we saw driving home from the Memphis airport the other night: “THIS IS YOUR SIGN TO BUCKLE UP.” (The folks at the Department of Transportation do try to make us smile.)

Or the one I saw years ago when I was speaking in Boulder, Colorado. It was February. I went out one morning for a walk on a pedestrian path. I approached an underpass and could see some patches of ice in the shadows of the bridge.

Not to worry! This progressive, free-thinking university city put up a sign to warn me: “ICE MAY EXIST,” it read. I thought, “This is SO Boulder!”

The sign begged more questions. Ice may or may not exist, correct? Do I exist? If I do exist, how did I come into being? What is the nature of existence? What is the nature of non-being?? Goodness! I was just going out for a walk.

Obvious signs

It’s not just in Boulder that I pondered the meaning of life upon seeing a road sign. While driving home from church in Northern Virginia, I saw a sign that read, “ROUGH ROAD AHEAD.” Ya think? Here I imagined Buddhists writing the road signs with their idea that “life is suffering.”

Then there are the obvious signs. I saw a “WARNING — ALLIGATORS” sign as I put my kayak in the Hillsborough River outside Tampa. The authorities-that-be felt the need to put another sign right below: “NO SWIMMING.” Really? Who was thinking of swimming with the alligators? The people in Florida really are crazy.

 

I was a chaplain for a hospice in Ft. Pierce, Florida, which had a hospice house for patients to spend their last days. There were tables and benches on the grounds for patients, their families, and staff to take a break outdoors. Beside a nearby pond, there was a sign, “WARNING BEWARE OF VENOMOUS SNAKES.” Good Lord, these dying folks have enough to worry about.

Family calming ahead

The “TRAFFIC CALMING AHEAD” sign was on a quiet, tree-lined suburban street in Alexandria, Virginia. This sign was followed by one that said, “SPEED CUSHIONS AHEAD.” I’ve heard them called “speed bumps” or even “speed tables” but “cushions”?

My wife, Sally, and I were in town to attend a funeral for a friend who died after living with ALS for years. Sally had known his wife since before they were married. Over the weekend we twice visited the widow’s home — once the night before the funeral and then for a gathering afterward – and saw the signs.

As we drove to her home, the words on the sign morphed in my head to “FAMILY CALMING AHEAD.” Indeed, it was. The widow and her two college-age children welcomed mostly family into their home the night before the funeral. There was lots of hugging and laughter. The scene was repeated after the service with a larger gathering of friends, business colleagues, and more family.

The grief process can be a rough road for many, but these calming events in the first days are a good place to start the journey.

Randomness, Death, and Mystery… It’s Okay

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Do you ever do this while reading random obituaries?

I see some person, about my age, who died of cancer. I read on and see it was lung cancer. I’m relieved. Obviously, they smoked. I don’t smoke. I won’t die.

Then, I read, a healthy person about my age dies suddenly from an undiagnosed brain aneurysm. No warning. They just drop dead. A random chance occurrence like a victim of a mass shooting at a grocery store.

We humans look for patterns — for reasons “why.” Some find comfort in the idea (*SPOILER ALERT* — not me) that God is in control of everything and sends some people a quick, unexplained death.

There are no accidents… or not?

I conducted a graveside funeral service years ago as a hospice chaplain. A woman came up to me after the service and told me her story. “A couple of years ago, my eight-year-old son was playing on the swing set in our backyard,” she started. “He jumped off the swing, fell on his head, broke his neck and died instantly. In my grief someone sent me a card that said, ‘With God there are no accidents.’”

I thought (but didn’t say), What a horrible thing to tell a grieving mother. God killed your son. Before I responded, I studied her face to see if I could catch some glimpse of how she received this message. I didn’t have to guess. She told me, “Those words have been so helpful to me.”

I was almost speechless. This woman is a complete stranger and I have no pastoral relationship with her. I would never want to take away a word that was helpful to her. I must have said something like, “I am so thankful that was helpful to you. It must have been a horrible time.”

What do I know? The card may be right.

Everything happens for a reason?

Contrast this with best-selling author Kate Bowler and her book Everything Happens for A Reason: And Other Lies I’ve Loved. The book jacket describes her situation:

“At thirty-five, everything in her life seems to point toward ‘blessing.’ She is thriving in her job, married to her high school sweetheart, and loves life with her newborn son. Then she is diagnosed with stage IV colon cancer.”

Bowler is an academic who has studied the “prosperity gospel.” That would be the megachurch televangelists who teach that if you just believe hard enough (and make a contribution) only good things will come your way. In her research, she saw the downside of this belief is that when you’re thrown life’s random tragedies you are left feeling like a loser.

Do yourself a favor and watch her TED talk on YouTube. Over six million people have viewed this 15-minutes of wisdom. She has learned to live with mystery… with randomness… with not having a “reason.” And it is okay.

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