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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?

 

 

Hard Choices for Loving People, Third Edition: “I Guess I Am Feeling Guilty…”

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

With tears in her eyes my friend said, “I have to make a life-and-death decision about my mother.” She didn’t know what to do. The mother was nonresponsive in the hospital and on dialysis. Her mom had said she never wanted to be on dialysis and the physicians caring for her said it was not doing any good.

I said to this distraught woman, “This is not a hard decision. Of course, you take her off dialysis for all the reasons you just gave me. What’s going on here that makes this so difficult?”

She replied, “I guess I am feeling guilty because I haven’t visited mom enough.”

I wrote of this story for the first time in the 1994 Third Edition of Hard Choices for Loving People. In the first two editions I had written just five paragraph about the emotional and spiritual struggles people encounter while making end-of-life decisions. In the third, I expanded this discussion to nine pages, about 20% of the book.

Spiritual and Emotional Concerns Became Important

In my very first blog post, I wrote about how this story became a metaphor for me. For patients and families end-of-life decisions are primarily emotional and spiritual. The expanded Third Edition reflected that new-found emphasis. I also added a fourth question to help with end-of-life decisions: “Can I let go?”

FULL DISCLOSURE HERE: I am a chaplain and tend to see spiritual issues in a lot of places.

A physician requested permission to use JUST the first chapter of my book to help him and his staff guide patients deciding about CPR. I asked him for specifics on how it would be used. He called back a few weeks later and said he no longer wanted to separate out that chapter. He explained, “I told the nurses what I wanted to do, and they said, ‘You can’t do that. You can’t talk about CPR without discussing the emotional and spiritual sides of these decisions.’”

This part of Hard Choices for Loving People has worked well. I was able to present the emotional and spiritual concerns in a way in which anyone could identify. All kinds of facilities have bought the book: Catholic, Baptist, Seventh Day Adventist, Jewish, Methodist, and Presbyterian hospitals and nonreligious organizations including VA-, academic-, and for-profit hospitals.

On the Road Speaking and Moving to Hospice

The wide distribution of Hard Choices for Loving People brought me invitations to go on the road to speak. I presented mostly to professional groups about helping patients and families with end-of-life decisions.

I also made a job change in 1996, leaving the nursing home and becoming a homecare chaplain with the Hospice of Northern Virginia. I hesitated in taking the job at first. I was concerned that by leaving the nursing home and going to hospice I might lose some authenticity in promoting how to have a peaceful death. I was worried that being a hospice chaplain people might say, “Of course he recommends that patients receive less aggressive care at the end of life — he’s a HOSPICE chaplain. What did you expect?”

I made the move anyway and I am so glad I did. I cannot say enough good things about my experience as a hospice chaplain. You get to visit with patients and families in their own homes. The team I worked with was the best. Although facing death is still very difficult, just being in hospice made patients and families so much more open to preparing for this last phase of life… and they let me be part of that.

Third Edition Statistics:

 

  • Subtitle: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient
  • Publication dates: 1994-2001
  • Third Edition books sold: 589,163
  • Total books sold: 831,842
  • Length: 44 pages
  • Endnotes: 68

 

Key content introduced in the Third Edition:

  • A fourth question to help with end-of-life decisions
    1. What does the patient want?
    2. What is in the best interest of the patient?
    3. What are the prognosis and probable consequences if a certain treatment plan is followed?
    4. Can I let go? If the answers to the first three questions point to withholding or withdrawing treatment, then this is the most difficult question.
  • New chapter on “Hospice and the ‘Comfort Measures Only’ Order” to help people make a decision regarding hospice and palliative care.
  • A list of three possible goals of medical care: 1) Cure; 2) Stabilization of functioning; 3) Preparing for a comfortable and dignified death.
  • A section discussing hospitalization for frail, failing, elderly patients.
  • Endnotes for healthcare professionals to have confidence that Hard Choices for Loving People was backed up by solid research in medical literature.

Hard Choices for Loving People, 2nd Edition: “The Story Becomes Front and Center”

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This is the second post in a series of articles about the writing and distribution of Hard Choices for Loving People. This piece covers the Second (or Revised) Edition.

This Revised Edition came just 19 months after the First. Below are the first lines of the 1992 edition of Hard Choices for Loving People. This story is repeated as the opening words in each of the editions to follow including the current edition (Sixth, 2016):

“On the occasion of her 102nd birthday, I went into Mable’s room at the nursing home to ask her about the secret to a long life. I expected some niceties like ‘clean living’ or ‘just trust God,’ since she was a minister’s wife. But she was too wise for that. ‘Mable, how do you live to be 102?’ Without hesitation she responded, ‘Just keep breathing!’

“I wish it were so simple. If we want to stay alive, we ‘just keep breathing.’ Or when there is no hope of recovery from an illness, we could ‘just stop breathing.’ Real life is not so simple for elderly in hospitals or nursing homes.”

I love this story.  I often tell Mable’s story at the beginning of a lecture. She always gets a good laugh.

From the very beginning, I told personal stories about my encounters with patients and their families. Opening with Mable’s story brought storytelling front and center. Stories became a powerful part of Hard Choices for Loving People.  Readers connected with the real people and events. I can’t tell you the number of times people came up to me after a lecture and said, “Your stories really got to me.”

Why a NEW edition of the booklet less than two years from when it first appeared? Two reasons…

First, Nancy Cruzan and her case continued to make news. I mentioned her in my last blog. Talk about a moving story. She was a young woman in a vegetative state in Missouri and her family requested that the artificial feeding be stopped so she could die peacefully. The U.S. Supreme Court said the state could require “clear and convincing evidence” that Ms. Cruzan would have wanted this withdrawal of treatment. After their request was denied, new witnesses came forward to tell of conversations they had  with Nancy when she said, in effect, “If I am ever nonresponsive, I would not want to live like that.” A new trial judge ruled this was “clear and convincing” and he allowed the removal of the feeding tube. She died on December 26, 1990.

Second, a new edition seemed warranted because of who was buying these books. Surprisingly, even though “Nursing Home Resident” was in the subtitle, hospitals and hospice programs were buying them. Community Hospice Care, based in California, bought 10,000 copies in one purchase. So I changed the words in the subtitle to “Elderly Patient” and revised the text to broaden the application to any frail, elderly person — not just nursing home residents.

Not too much else was changed: The text went from 30 to 32 pages and we hired a graphic designer to update the cover. I repeated the same three questions I introduced in the First Edition. I also repeated the same five paragraphs on the spiritual and emotional concerns at the end of life.

The self-publishing journey begins…

Because of the success of the Second Edition, I started a publishing company.

A & A Publishers, Inc. was born in June 1993, named for my kids, Aaron and Ashley. Ashley, still in high school, became the first employee. Our one-car garage was taken over with pallets of books. UPS came every day. I got a PO Box, a business phone and a fax line. There was no internet and we did not take credit cards. People sent us money and we sent them books.

It had all started out of a desire to help the two hundred residents and their families at one nursing home. It was gratifying to know that my stories were now helping thousands of people have a more peaceful death.

 


Second Edition Statistics:

  • Subtitle: CPR, Artificial Feeding and the Elderly Patient
  • Publication dates: 1992-1994
  • Second Edition books sold: 148,700
  • Total books sold: 242,679
  • Length: 32 pages

 

Key content introduced in the Second Edition:

New research on CPR in nursing homes was added.

Hard Choices for Loving People, 1st Edition: “Don’t Put It in Writing!” — I DID

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

They told me not to write down the information about how some treatments, like CPR, lack benefit for or may even harm nursing home residents. “They” were The Ethics Committee.

The fact that I was even sitting on a medical ethics committee was curious. I was facing unemployment in the summer of 1983. My wife and I were supporting a family with kids aged seven and nine. I needed a job. A pastor friend of mine, Gordon Cosby, gave my name to the owners of Fairfax Nursing Center in the Virginia suburbs of DC. They were just looking for a part-time chaplain. Anybody would do, really.

My work experience since seminary included five years as a youth minister, one year as a carpenter and four years directing an inner-city ministry to help hard-to-employ people. Nothing indicated I was fit to be a nursing home chaplain. I said I would give it a try.

And I found my calling

The nursing home owners, Robert and Charmaine Bainum, were unusual for wanting to attend to the spiritual needs of the residents, families and the staff. Chaplains were not required by regulation. The Bainums, of course, wanted to make a profit but their philosophy was that people will pay extra for the best quality care. They felt spiritual care was an important piece of the best care. It turned out that I loved the work. I asked if we could make the position full-time after just six months on the job. They said, “Yes.” And I found my calling.

Virginia passed a Natural Death Act in 1983. For the first time residents of the state had a standard “living will” form and a process for making end-of-life decisions for those who did NOT have this piece of paper. We formed an ethics committee and asked the question, “What are we going to do about this new law?” Our answer, “We are going to tell all 200 residents and their families about their right to refuse treatment and their right to an advance directive.”

“Oh…and Hank? We want YOU to tell everybody.”

I took a crash course on CPR and feeding tubes

I had just been given twenty more hours each week. I guess they thought, since I had all this time, I should be the one. But perhaps they intuitively knew that these decisions were, at their core, emotional and spiritual.

So I took a crash course in an effort to understand CPR and feeding tubes and the ethics surrounding them. I read medical journals. Mostly I was taught by the Director of Nursing Beth Kleb, RN; Administrator Pat Smith, RN; and dozens of staff nurses. To start, I reviewed all 200 patient charts and found only about 20 had any sort of record of advance care planning. There were very few living wills and very few “No CPR” orders.

After a couple of years of talking to residents and families I suggested to the ethics committee that I write a booklet about making end-of-life decisions. To a person, they responded, “Don’t put it in writing! We like what you are doing… talking to everyone. Just don’t write it down.”

Okay.

Then, in 1988, I saw a study in the latest issue of the Journal of the American Medical Association (JAMA) about the use of CPR at the V.A. hospital in Houston. Very few patients who received resuscitation attempts survived to be discharged and ZERO patients over age 70 survived. I went to my office and started writing the first draft of what was to become Hard Choices for Loving People.  I thought, “We have GOT to get this word out.”

Easier to get forgiveness than permission

It was the classic case of it being easier to get forgiveness than permission. Now, the ethics committee said of my draft, “This is great! Let’s publish it.”

I delayed.

There was one more piece of information I was waiting for. The case of Nancy Cruzan was making its way to the U.S. Supreme Court. Nancy was a young woman in a vegetative state in a Missouri state hospital being kept alive on a feeding tube. Her family had requested the artificial feedings be stopped knowing that is what she would have wanted. The state fought the family all the way up the court system. On June 25, 1990, the SCOTUS sided with the state saying it could require “clear and convincing evidence” that this withdrawal of treatment is what she would have wanted. They went on to say that IF there were such evidence (like a living will or verbal statements) then it was okay to withdraw artificial feeding and let her die.

I had the final pieces to tell my story. CPR doesn’t work for nursing home residents and if the patient chooses, it is okay to withdraw a feeding tube.

The First Edition of Hard Choices for Loving People (1990) had the subtitle of CPR, Artificial Feeding Tubes and the Nursing Home Resident. I wrote one chapter on CPR, one on feeding tubes and a chapter with practical suggestions like completing an advance directive. After an early draft was criticized for being both too willful in trying to manipulate the reader to do what I wanted AND too vague in stating what I truly thought about these treatments, I added a final chapter offering clarity about my opinion. Being clear about my opinion, I cleaned up the earlier text to encourage readers to make up their own minds about these treatment decisions. I closed with some words about the emotional and spiritual concerns at the end of life.

Lightning struck

My goal was to help the residents of this one nursing home have more peaceful deaths. As an afterthought, I suggested to the administration that we send out sample booklets to 100 nursing homes in Virginia to see if we could sell some. Out of that 100 we sold about 4,000 copies. Then lightning struck.

One direct result of the Cruzan case was that congress passed and the president signed the Patient Self-Determination Act. This law required all facilities that received federal funds (Medicare and Medicaid) had to inform patients of their right to accept or refuse treatment and their right to an advance directive. BINGO. We started renting mailing lists and sent a copy of Hard Choices to every nursing home in the country. 1991 saw sales take off. Facilities needed to fulfill the law and my booklet did just that.

I actually was surprised and quite humbled by the response. Selling the book to others was just an afterthought.


First Edition Statistics:

  • Subtitle: CPR, Artificial Feeding Tubes and the Nursing Home Resident
  • Publication dates: 1990-1992
  • Total books sold: 93,979
  • Length: 30 pages

 

Key content introduced in the First Edition:

Three questions to help with end-of-life decisions

  1. What does the resident want?
  2. What is in the best interest of the resident?
  3. What is the prognosis if a certain treatment plan is followed?
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