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Curious After Seven Decades Above Ground

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Hank and his sister Janice with their brother Dennis two weeks before he died

My birthday passed last week. Number 74. Now, a bitter-sweet day.

Bitter-sweet because I miss my younger brother, Dennis. He died on my birthday five years ago. When his wife called my sister to tell her Dennis had died, she said, “Don’t tell Hank. It will ruin his birthday.” She was right. My sister immediately called me, and it ruined my birthday.

The day now brings the appropriate mix of gratitude for another year of life and grief that my brother is no longer here to call me with birthday wishes. Bitter-sweet.

I find I’m getting more curious about myself as I settle into over seven decades above ground.  What am I curious about? About me. My thinking. My spiritual beliefs. I’m curious how can I still find new ways of thinking about and experiencing things spiritual. Curious how I find new ways of verbalizing these experiences.

An old man listening to books

Hank’s 74-year-old self

Last week, I told the story of an old man at the nursing home where I was the chaplain. I was in my 30s and he was in his 90s. The story was about his loveless marriage (according to his wife), but I mentioned that he listened to recorded books.

Every day, he’d be bent over in his wheelchair, leaning down, straining to hear history books being read on a record player. As a young man, I thought, “What is he doing? What is this 90-year-old man going to do with this new knowledge?” He talked very little. He was years past teaching children, or anyone for that matter. He just sat in his room and listened as the day crept slowly by. Now, I think, “I am the old man!”

You start dying slowly

Late last year I was introduced to the poem “You Start Dying Slowly” by Martha Medeiros. In Portuguese it is A Morte Devagar — “A slow death”. This poem meant so much to me that I printed it out and glued it to the inside of the journal I just started in November.

Here are a few lines:

You start dying slowly…
If you do not risk what is safe for the uncertain,
If you do not go after a dream,
If you do not allow yourself,
At least once in your lifetime,
To run away from sensible advice…

Referring to the poem, I wrote in the journal on November 21, 2021, “I am profoundly moved by this piece. I still marvel that, at my age, I am still wanting to make something of my life. I still struggle with taking risks.” Weeks later, on January 4th I wrote, “‘Who are you God and who am I?’ St. Francis said and I BOTH say. I am almost 74 and have not settled this.”

My 24-year-old self meets my 74-year-old self — it is not pretty

Hank’s 24-year-old self

Fifty years ago, if my 24-year-old self met my now 74-year-old self, he would have called me a heretic. I was so certain about things at 24. Now, being “right” is less important. Rather, following the teaching of Jesus, right action is more important that right theology.

Now, questions are more important than answers. Curiosity feels better than certainty. I am the old man listening to books. I listen not to know more but to be comfortable with not knowing. The mystics are my favorite guides. Thomas Merton summed up, for me, the mystery of knowing and not knowing God:

 

Thomas Merton

“Your brightness is my darkness. I know nothing of You and, by myself, I cannot even imagine how to go about knowing You. If I imagine You, I am mistaken. If I understand You, I am deluded. If I am conscious and certain I know You, I am crazy. The darkness is enough.”

 

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

My 2021 books on a Civil War that will not go away

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Sometimes a wound is so deep and unhealed that I can’t stop myself from trying to understand what it all means. One only has to look at the images of the Confederate flag being carried into the U.S. Capitol last January 6th to know this war has not gone away.

January 6, 2021, U.S. Capitol

“This war” is, of course, the American Civil War. In 2021, I again read books looking at “this mighty scourge,” as Lincoln called it in his second inaugural. I recorded a brief video at William Faulkner’s home. I quoted him, “For every Southern boy fourteen years old, not once but whenever he wants it, there is the instant when it’s still not yet two o’clock on that July afternoon in 1863” (Intruder in the Dust, 1948). I was that lad growing up in the Deep South. I knew Pickett’s charge on the third day at Gettysburg was the “high water mark” of the Confederate nation.

I started my review of my 2021 reading with spiritual books and then books on science. Here are my Civil War reads:

Grant (2017) By Ron Chernow

I listened to all 48 hours of this 900+ page book. It was worth every minute. Grant overcame so many setbacks to succeed as a general and President. Most significantly, according to Chernow, was his conquering his struggles with alcohol, a fact he does not mention in his own memoir. Had the Civil War never happened, history might not have known the name of U.S. Grant. It was his strategy to cut off the Southern states from beyond the Mississippi River with the fall of Vicksburg (July 1863), send Sherman through Georgia (1864), and capture Lee’s Army of Northern Virginia at Appomattox. There was no finer moment in his life than when he offered generous terms of surrender to Lee. He hoped to begin the healing of a fractured nation. Sadly, as President, he had to fight the South again as it rose in the K.K.K. We are fortunate, as a nation, that Grant and Lincoln rose to the top when we needed them.

Robert E. Lee and Me: A Southerner’s Reckoning with the Myth of the Lost Cause (2021) By Ty Seidule

Author Ty Seidule was born on July 3rd into a family culture steeped in the myth of righteous cause for which we Southerners fought. When people said, “too bad you weren’t born on the 4th,” he’d reply that he was glad to have been born on the day of Pickett’s charge (there it is again). Seidule rose through the ranks in the U.S. Army and taught at West Point. Through his academic research and soul-searching, he concluded that the “lost cause” myth of the South was wrong. According to Seidule, the Civil War was about slavery and the Confederate soldiers who took up arms against the U.S. government were traitors. He makes a compelling argument that we no longer need to honor these traitors with monuments or U.S. Army bases.

 

 

In the Hands of Providence: Joshua L. Chamberlain and the American Civil War (1992) By Alice Rains Trulock

Like most, I knew of Chamberlain for only a few hours of his life on July 2, 1863, at Gettysburg. He commanded the 20th Maine at the extreme end of the Union line on Little Round Top. His troops were under repeated assault and running out of ammunition. Had he failed in defending his position, the entire U.S. Army on the field could have been destroyed in a flanking maneuver by the advancing Confederates. He ordered his men to fix bayonets, and they charged downhill, capturing more than 100 Southerners and saving the day. Many books and movies have captured this one moment. He was a college professor before the war. He became a college president and served four years as governor after returning to Maine. One other moving scene in Chamberlain’s military career was the last day of the war. He was the commander in charge of the ceremony at Appomattox, where the defeated rebels would surrender their arms. In the spirit that Grant set in the terms of surrender, Chamberlain ordered his men to salute their defeated foes, now countrymen once again.

Baptized in Blood: The Religion of the Lost Cause, 1865-1920 (1980, 2009) By Charles Reagan Wilson

With all believing God is on their side in a war, it is especially hard for the losers to explain what happened. This presented an exceptional problem for the dominant version of Christianity in the South (evangelical Protestant). In their view, the Yankees were more secular, more liberal, more urban, and less devoted Christians. This book by Charles Wilson, a former professor at the University of Mississippi and fellow church member with me in Oxford, explains the mental and theological gymnastics my Southern ancestors went through to explain how God was on their side. God sided with the South because their cause was righteous, but the North’s industrial strength was too much even for God. Dr. Wilson recently gave three lectures on this topic at St. Peter’s Episcopal Church in Oxford, and they are on YouTube. If there is any doubt that Southerners saw their cause as God’s cause, you need to look no further than two blocks from where Dr. Wilson lectured at St. Peter’s. On the Confederate monument (1907) on the Square is the inscription “They gave their lives for a just and holy cause.”

Fighting to defend slavery was “A JUST AND HOLY CAUSE.” Monument on the Square, Oxford, Mississippi

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Hank’s 2021 Books on the Spiritual Side of Science

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When I explore the secrets revealed by science, I feel in the presence of something sacred. As I looked back on my 2021 books written by scientists, they all had a spiritual spin to them. I started my review of books last week. Here are my books on the Spiritual Side of Science, reads for the year:

Searching for Stars on an Island in Maine (2018) By Alan Lightman

“As a physicist, Alan Lightman has always held a purely scientific view of the world.… But one summer evening, while looking at the stars from a small boat at sea, Lightman was overcome by the overwhelming sensation that he was merging with something larger than himself — a grand and eternal unity, a hint of something absolute and immaterial.”

 

 

 

Almost Human: The Astonishing Tale of Homo Naledi and the Discovery That Changed Our Human Story (2017) By Lee Berger and John Hawks

My interest in human evolution stems from one of my core spiritual beliefs — that the self is an illusion. My work with the dying, my reading death and dying literature, my contemplation of the mystics, and my pondering of my own Christian beliefs led me down this path. I am curious about how we evolved from being animal-like with no sense of self to being self-aware. Genesis pinpoints the moment when Adam and Eve’s eyes opened, and they saw they were naked — they became self-aware. This book is just another piece of this puzzle looking into our human ancestors. “This is Lee Berger’s own take on finding Homo Naledi, an all-new species on the human family tree and one of the greatest discoveries of the 21st century.”

The Home Place: Memoirs of a Colored Man’s Love Affair with Nature (2016) By J. Drew Lanham (audio read by the author)

Lanham is a “birder” with a PhD from Clemson University, where he teaches. He touches on two themes close to my heart — love of the outdoors and growing up Southern. Lanham’s viewpoint is that of a Black man who descended from generations of family in South Carolina, whose professional field is almost entirely comprised of White scholars and birders. “By turns angry, funny, elegiac, and heartbreaking, The Home Place is a remarkable meditation on nature and belonging, at once a deeply moving memoir and riveting exploration of the contradictions of Black identity in the rural South — and in America today.”

 

Useful Delusions: The Power and Paradox of the Self-Deceiving Brain (2021) By Shankar Vedantam and Bill Mesler

I have long been fascinated by the placebo effect and reviewed this book in a previous blog about my experience with it. Our delusions are not only helpful in medicine but marriage, too. Here is a quote from the book: “The researchers found that the couples who had the most inflated views of their partners — the ones who saw their relationships with the greatest degree of self-deception — were the happiest. This is hardly a new idea: Benjamin Franklin once offered the advice, ‘Keep your eyes wide open before marriage — and half-shut afterward.’” Vedantam hosts a great podcast, “Hidden Brain.”

Illness as Metaphor (1978) and AIDS and Its Metaphors (1989) By Susan Sontag in one audio program

In the 1978 monograph, “Sontag shows how the metaphors and myths surrounding certain illnesses, especially cancer, add greatly to the suffering of patients and often inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is — just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is highly curable, if good treatment is followed.” She then expands on this regarding AIDS. The backstory of these two pieces is that she twice “beat” cancer with treatment. She died of the disease in 2004. Her son, David Rieff, wrote of the tragic (in my view) ending of her life in Swimming in a Sea of Death: A Son’s Memoir.

Blue Mind: The Surprising Science That Shows How Being near, in, on, or under Water Can Make You Happier, Healthier, More Connected, and Better at What You Do (2014) By Wallace J. Nichols

It is no secret that I get spiritual refreshment from paddling my kayak. I did a video while on a kayak trip in the Mississippi Delta where I mentioned this book. The subtitle says it all. We humans benefit spiritually by being near water.

 

 

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Our Struggle with Dying Starts When We’re Toddlers

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[Adapted from a chapter in Light in the Shadows by Hank.]

“This is where our struggle with dying starts,” was my first thought.

“Putting It Together”, J.D. Hillberry www.jdhillberry.com

Many summers ago, I was wandering through an arts festival in Crested Butte, Colorado, when I came across the works of an artist who made pencil drawings. I was fascinated by a sketch he had made of his two-year-old son, depicting him as an unfinished jigsaw puzzle.

The child is looking down at his hand, which appears to be emerging from the flat surface of the paper. There is a puzzle piece in his grasp. He is searching for the place where that piece of himself fits. The artist titled the picture “Putting It Together.”

This memory of that Colorado summer came as I am now, once again, hanging out with a toddler and his infant sibling. This is my third tour of duty caring for little humans. First, there were my children. Later, I provided daycare once a week for two of my grandchildren through their early years. Now, we occasionally watch a friend’s two sons, who are 18 months and four months old.

Toddlers and the “Denial of Death”

I was watching my two grands after reading Ernest Becker’s Pulitzer-Prize winning

Hank’s grandson learning control at the light switch

book, The Denial of Death. Now, under the influence of these two new little ones in my life, I am rereading Becker. His main thesis is that the prospect of death is THE driving force in human behavior. Both the building of our individual ego or self and our culture’s attempt to shield us from the horror of death’s finality. Here’s a sample:

“[A child] avoids [despair] by building defenses; and these defenses allow him to feel a basic sense of self-worth, of meaningfulness, of power. They allow him to feel that he controls his life and his death, that he really does live and act as a willful and free individual, that he has a unique and self-fashioned identity, that he is somebody.… We don’t want to admit that we are fundamentally dishonest about reality, that we do not really control our own lives.” (Ernest Becker, The Denial of Death. p 55.)

Play and learning to take control

The toddlers in my life have shown this behavior. I remember my grandson discovering the light switch. I would stand him on a chair, and he would play with the switch. He would flip it up and then jerk his head toward the ceiling to see the light appear. Then, down and the light goes off. His actions were affecting his environment.

Hank’s granddaughter and the “singing bowl”

Let a child play with a musical instrument. My grandchildren both loved to bang on the piano or hit my singing bowl with the mallet. Any noise accomplished their unconscious goal of finding out they could influence the world around them.

Even the delight I recently observed of our friend’s toddler playing with the garden hose in our backyard revealed a growing sense of self. He put his fingers in the nozzle and felt the water. He found he could direct the flow of water into the air or on me. He was gaining control.

Fortunately, gaining control of one’s life can be beneficial to everyone concerned. Eventually, the child learns that studying improves your grades. Exercise makes you feel better. Treating people kindly encourages them to return the kindness.

Even toward the end of life we can practice some control, choosing to seek a cure for a terminal disease or focus more on easing physical and spiritual pain.

Letting go of the illusions we created

Third tour of duty with little humans

Every child makes their own progress toward gaining a feeling of control. This positive self-image that gives us a sense of meaningfulness, safety, and stability, allows us to grow and thrive. What is truly happening is that WE are creating this ego with the material that is handed to us genetically and emotionally. If we do the job adequately, we can live a life enjoying emotional and spiritual health.

So why did the sketch of the child make me think, “This is where our struggle with dying starts”? One day, in the last phase of life, all this meticulously constructed personality we spent our whole lives creating is revealed for what it is — a mask. The root meaning of the words “person” and “personality” is from the Latin persona, a mask worn by actors in a play.

Last week I wrote about dying without illusions. Watch a toddler and see those illusions being created.

 

 

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.

My Birthday, Life Expectancy, and Regret Lists

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“The death of one man is a tragedy. The death of millions is a statistic.” ―Joseph Stalin

NEWS ITEM: “Life expectancy in the United States fell by a full year during the first half of 2020 [to 77.8 years], a staggering decline that reflects the toll of the COVID-19 pandemic as well as a rise in deaths from drug overdoses, heart attacks and diseases that accompanied the outbreak…” Washington Post, February 17, 2021

“The days of our years are threescore years and ten; and if by reason of strength they be fourscore years, yet is their strength labor and sorrow; for it is soon cut off, and we fly away.” ―Psalm 90:10

NEWS ITEM: Last week, Hank Dunn celebrated his birthday on Zoom with his family in Colorado, Virginia, North Carolina, and Mississippi. His age is north of the biblical “threescore and ten” and south of “fourscore.”

I tend to take life expectancy tables personally.

Here’s a sobering statistic — of every 100,000 people born in my birth year, only 73,246 are still living. CDC report “United States Life Tables.”

But wait…there’s more! Of those my age, our life expectancy is now about 14 years. That means in 14 years half of those my age who were alive in 2021 will be dead. So, it’s 50-50 I will make it to 2035.

Me with my sister, Janice, and my brother Dennis, 2017. Two weeks after this photo was taken, Dennis died on my birthday.

And looking at the stats closer to home is just as sobering. Of the six people in my family of origin (me, my parents, two brothers, and a sister) only two of us are still living. I hate to agree with Stalin. But the fact that 26,754 out of 100,000 people in my cohort are now dead is a statistic to me. But when my 64-year-old brother, Dennis, died on my birthday in 2017 — that was a tragedy.

Passing 70 and living under the threat that I could die abruptly from COVID-19 has gotten me thinking about legacy. What do I want to leave emotionally and spiritually to my children and grandchildren? And what about all this stuff I have written — some of it quite personal and self-revealing?

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” ―Samuel Johnson (d. 1784)

I have said to myself what I tell patients with a terminal diagnosis, “Keep your regret list short.” If I were to die, are there things I would have regretted leaving undone? Gathering my personal writings like a memoir has been on my list. Thinking about my own death is not depressing to me. In this moment of time, while I am healthy, I agree with Samuel Johnson — thinking about my death concentrates my mind wonderfully.

I have been organizing things I have written over the last 45 years or so, and they are legion. I have printed out almost 700 pages and gathered them in two-inch thick binders. In these pages I can trace my spiritual growth (or lack thereof) over those years. I wrote about family tragedies, joys, and hurts I sustained.

Do I expect all my children and grandchildren to read all this stuff? Hardly. I would rather make it available and they never be read than someday one of them wonder what my thoughts were about a family event and not have my spin on it.

Keep your regret list short.

Check.

End-of-Life Spiritual & Emotional Concerns

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“What has been the meaning of my life?”

“What happens to me after I die?”

“Please forgive me.… I forgive you.”

In my very first blog post almost ten years ago I told the story of a woman who was struggling with making an end-of-life treatment decision for her mother. She told me, “I think I’m feeling guilty because I haven’t visited mother enough.” That encounter became a metaphor for me. When making end-of-life decisions, patients and families are most often struggling with emotional and spiritual issues.

On February 4th I am giving a virtual talk for Mission Hospice titled, “Spiritual and Emotional Concerns at the End of Life.” (1:00 – 2:30 pm Pacific Time or 4:00-5:30 pm Eastern) You can register here.

Of course… I’m a chaplain. It’s my job to seek out emotional and spiritual concerns. My colleagues –  doctors, nurses and social workers – tend to agree with me. I have summarized these emotional and spiritual concerns in a brief list. Below is my list, which grew out of what I have observed in my patients, their families, in my own life, and by reading the writings of the mystics and “death-and-dying” literature.

Spiritual and Emotional Concerns at the End of Life

(I have provided links to previous posts on some topics.)

  • Answering the question, “What is the meaning of my life?” (I wrote about here.)
  • Seeking forgiveness and reconciliation
  • Gaining a sense that what is happening is okay: “Letting be”
  • Gaining a sense of being part of a greater whole, often expressed as living beyond death (see here and here).
  • Coming to terms with the denial of death (see here)
  • Letting go of all I have worked for over a lifetime: “The illusion of the self”
  • Coming to terms with the loss of control

Over the next two weeks heading toward my presentation, I will pick a couple of these and write about them.

I welcome your suggestions to add to my list. Please email me at [email protected].

 

Hard Choices for Loving People, Sixth Edition: “Competing Against Myself”

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This is the sixth post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the Sixth Edition.

“Why would I want to compete with myself?”

In 2014, Quality of Life Publishing Company requested permission to reprint the “artificial nutrition and hydration” chapter of Hard Choices for Loving People. They publish materials to help people facing the end of life, so they were trying to reach the same professionals I was.

When I was working with a rebranding consultant in 2012, I listed Quality as one of my competitors. “Why would I want to compete with myself?” was my first response. I had high regard for their work, but to allow them to publish my words and sell them to the same buyers seemed counterintuitive.

The truth was, I own the rights to my words but not the ideas. I got the sense they were going to write a pamphlet on artificial nutrition and hydration whether I was involved or not. This turned out to be a no-brainer. Of course, they could publish my work.

Fast forward to 2016. My wife and I were downsizing and moving from the D.C. suburbs to Florida. I was ready to retire from self-publishing. This time, I approached Quality. Long story short, they became the exclusive publisher of the Sixth Edition of Hard Choices for Loving People in April 2016.

I must give a shout-out to the entire team at Quality of Life Publishing for seeing the value in Hard Choices for Loving People and for the good work they do. They are led by Karla Wheeler who is the founder and editor-in-chief. A writer and editor by profession, she turned her own experience with grief toward helping others through the books, newsletters and pamphlets they produced. I owe it to CEO Gretchen Landolt for bringing her familiarity with my book over from her previous work at Avow Hospice. COO Kelly Brachle oversees the editing, design and layout and she does fabulous work.

I am grateful to now have a team behind me to offer feedback and handle the day-to-day business of publishing my books. Even better, they share my mission to help patients at the end of their lives and their families experience more peaceful deaths.

You can’t beat that!

Sixth Edition Statistics:

 

  • Subtitle: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness
  • Publication dates: 2016-Present
  • Sixth Edition books sold: 430,284+
  • Total books sold: 3,856,940+
  • Length: 80 pages (4 pages added)
  • Endnotes: 79

Key changes to the Sixth Edition:

  • Published by Quality of Life Publishing Company, ending 25 years of self-publishing.
  • Sections added on “Palliative Care,” “Pacemakers and Defibrillators” and “POLST” (Physician Orders on Life Sustaining Treatment)
  • Added a quote from Flannery O’Connor. “I have never been anywhere but sick. In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company; where nobody can follow. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.” The Habit of Being: Letters of Flannery O’Connor, 163.

 

Hard Choices for Loving People, Fifth Edition: “Letting Be”

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This is the fifth post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the Fifth Edition.

It actually hurt a little. One of the most well-known end-of-life experts in the country criticized my poem. Alas.… More on that below.

Hard Choices for Loving People came into its own during the Fourth Edition, between 2001 and 2009. We passed one million books sold in 2002 and two million in 2007. At one point, we were shipping over 4,000 books a week. In 2009, a Taiwanese publisher requested permission to translate the text into Chinese, even delaying publishing until the Fifth Edition was ready. Later, in 2013, a publisher in Tokyo requested permission for the Japanese translation.

So, why a Fifth Edition if things were going so well with the Fourth?

It was all about staying up to date.

In truth, not much had changed since 2001 in the medical literature about the end-of-life decisions I discuss in Hard Choices for Loving People. CPR still did not offer any survival hope for seriously ill, frail, failing patients. Feeding tubes still did not help advanced dementia patients. Hospice was still a wonderful benefit for dying patients. All my new research confirmed my previous conclusions.

I added to the endnotes. They took up five pages of fine print at the end of the book. I don’t think my lay readers cared so much about the “preponderance of evidence” I presented. They just needed help in sorting out end-of-life medical treatment decisions. I wanted to convince the healthcare professionals who would hand the book to patients and their families to have confidence in my words.

From “Letting Go” to “Letting Be”

In the Third Edition, I included a story about an AIDS patient who said, “I finally learned the difference between giving up and letting go.” In the Fourth Edition, I expanded his words into a poem. I sent one of the drafts of that edition to Dr. Joanne Lynn, a medical researcher at George Washington University in D.C. I had gotten to know Dr. Lynn while speaking together at local events. I am forever grateful for her feedback.

Excerpt from the original poem

Next to my poem about letting go, she wrote, “Hank, I have stopped using the term ‘letting go’ with my patients and talk more about ‘letting be.’” I was about to put the book on press and did not want to mess with my very popular poem, so it was printed it as I wrote it: “Giving Up and Letting Go.”

But I never forgot her words. Over the years, I, too, started talking more about “letting be” than “letting go.” It just seemed gentler. “Letting go” reminds people of a loss and that they are actively losing something — their life or someone they love. “Letting be” just reminds people to not resist what is happening. It’s okay. Just let things be. This was the only significant change in the Fifth Edition text: “Giving Up, Letting Go, and Letting Be.”

Fifth Edition Statistics:

 

  • Subtitle: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness
  • Publication dates: 2009-2015; now published in Japanese and Chinese
  • Fifth Edition books sold: 1,116,482
  • Total books sold: 3,456,666
  • Length: 76 pages (same as the Fourth)
  • Endnotes: 147 (up from 98 in the Fourth)

Key content introduced in the Fifth Edition:

  • Poem changed from “Giving Up and Letting Go” to “Giving Up, Letting Go, and Letting Be”

Hard Choices for Loving People, Fourth Edition: “It’s Time to Move This Up a Notch”

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This is the fourth post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the Fourth Edition.

From my journals:

November 29, 2000: “A case manager gave me some feedback about the book that she liked the ‘balanced approach.’ As I think of the rewrite of Hard Choices, I want to keep that feel to it.”

December 20, 2000: “I am looking forward to the rewrite of Hard Choices. I have a lot of ideas. I think I can improve it but need to keep the best elements of the current edition.”

January 14, 2001: “I fear tampering with Hard Choices. I want the knowledge and research to be woven with gentleness and spirituality.”

March 26, 2001: “My thoughts are often with my revision of Hard Choices. I think it is a good/great revision. I hope I can work with the Apertures people on the cover and improving the text. It is time to move this up a notch.”

The millennium turned. I moved from nursing home chaplain to hospice. My world of end-of-life care now included people my own age and children. Turns out, it wasn’t just the elderly who were dying. My book, Hard Choices for Loving People, had to keep up.

More Big Changes

There is a reason most of us die when we are old. We tend to gather multiple health problems which all add up and make us more frail.  We learn to live into advanced age with greater disabilities. Frailty with multiple medical problems can happen at any age. We just usually avoid death until we get old old.

So, I changed my subtitle in the 2001 Fourth Edition of Hard Choices for Loving People from “elderly patient” to “patient with a life-threatening illness.” I devoted several paragraphs to making treatment decisions for children. The grief surrounding these decisions for children is so much harder because it wasn’t supposed to be this way — for children to die before their parents.

Another big change in the Fourth Edition was reference to the research on feeding tubes for patients with advanced dementia like Alzheimer’s. Eating difficulties are common in later stages. In some cases, feeding tubes were inserted to keep the patient from “starving to death.” New research showed that feeding tubes did not help these patients, but actually did them harm. Since around the time I included those studies, feeding tube use for advanced dementia has been cut in half. I don’t know if Hard Choices for Loving People had anything to do with that, but I like to think it made a difference.

A Whole New Look

One reviewer of a draft of the first edition was a well-known Christian author, Elizabeth O’Connor (I wrote earlier about another influence she had on the book AND on my entire life.) The first thing she said was, “Hank, you need an editor.” I hired a copy editor for the Third Edition. For the Fourth, I got in touch with an old friend, Pat Gerkin, who not only corrected my copy, but offered substantive changes. (She, by the way, has since become quite a gifted artist.)

In one of life’s simple twists of fate, I stumbled into the industrial park office of Apertures in Herndon, Virginia. I was looking to have some slides processed for my lectures. (This was way back in the 1990s when “state-of-the-art” meant using a computer to generate 2X2-inch Kodak Carousel slides. If I have to explain to you what a Kodak Carousel slide projector is… sorry, we don’t have time.)

I met Paul Gormont, graphic designer, and Helmuth Humphrey, photographer. To make a long story very short, in 2001 they redesigned the cover and layout of each page. Their work still is seen in the current edition almost twenty years later.

The addition of a first-rate editor, graphic designer and photographer — “It is time to move this up a notch.”

Fourth Edition Statistics:

  • Subtitle: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness
  • Publication dates: 2001-2008
  • Fourth Edition books sold: 1,508,342
  • Total books sold: 2,340,184
  • Length: 76 pages (up from 44 in the Third)
  • Endnotes: 98 (up from 68)

 

Key content introduced in the Fourth Edition:

  • Discussion of goals of medical care given a prominent place in the introduction
  • Four new sections added: Ventilators; Dialysis; Antibiotics; and Pain Control
  • A new question to help with end-of-life decisions:
    1. What is the agreed-upon goal of medical care for the patient at this phase of life?
    2. What does the patient want?
    3. What is in the best interest of the patient?
    4. What are the prognosis and probable consequences if a certain treatment plan is followed?
    5. Can I let go?

 

 

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