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Archive for November, 2020

Hard Choices for Loving People: “Actually, Just One Hard Choice”

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This is the seventh and last post in a series of articles about the writing and distribution of Hard Choices for Loving People.

Article featuring the 1st edition and its subtitle, “CPR, Artificial Feeding Tubes, and The Nursing Home Resident”

What is in a name? …or title? …or subtitle?

Over 30 years, Hard Choices for Loving People has been the title of the book. But the subtitle has morphed, most notably in the audience to whom the book is addressed. It began with “the nursing home resident,” then changed to “the elderly patient.” Next was “the patient with a terminal illness,” then, “the patient with a life-threatening illness,” and finally “the patient with a serious illness.”

I wanted to welcome as many people as possible into reading my book. My constant worry was that I would turn people off or scare them away or that they would think “this book is not for me.” When I had “terminal illness” in the subtitle, readers might resist facing this fact until a few days, or even hours, before death. They need to read the book long before that time. So I replaced “terminal” with “life-threatening.”

I have now settled on “serious illness” for several reasons. First, it is the language you find in medical journals. Second, there is a standard definition for what a serious illness is; essentially, an illness with a high probability that it will end in death and which causes burdens on the patient and their caregivers. Third, people know if they have a hard time getting out of a chair or are in constant pain something is “serious.”

I didn’t want to scare people off

Where did the book title come from? To tell the truth, I can’t remember exactly how I came up with the name Hard Choices for Loving People. As I said, I did not want to scare people off, so I avoided words like “preparing for death,” or “let go.” If people are struggling with accepting a terminal diagnosis, they certainly did not want to read a book to help prepare them for death.

The double entendre was intentional. These were hard choices as people are figuring out the loving thing to do. AND loving people have to make these hard choices.

I’ll close this series of articles with an excerpt from the book where I address these choices, or, rather, a single choice:

“The truth is that we will die whether we give up, let go, or let be. We are making a choice about the nature of our dying or the dying of one we love. We can choose to die in trust and grace or in fear and struggle.

“Perhaps I titled my book improperly. We are not faced with many hard choices. We are faced with one hard choice: Can we let go and live life out of grace or must we hold on out of fear? Can we just let things be? That is really what we are talking about. To withhold or withdraw artificial and mechanical devices is just returning the patient to a natural state. We are accepting what is. We have come to accept that the patient is dying and we will just let be.” (Hard Choices for Loving People, p. 73)

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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www.QOLpublishing.com

Copyright 2021, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

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