Compassionate, informed advice about healthcare decision making

Archive for August, 2023

Dementia? I’d Rather Not

Posted by

I often think about spending my last years of life in memory loss.

Hank’s extended family of origin, 1960. All but one of the adults in this photo died with dementia

One photo says it all. 1960. I am twelve. My mother’s family of origin gathered with our various aunts, uncles, and cousins surrounding my grandmother. Seven adults and seven children. Six of the seven adults died with dementia. Aunt Martha was the only one spared, and she was not a blood relative of mine.

My mother, who probably had Alzheimer’s, died at age 92. Dad got a double-whammy of Parkinson’s and multi-infarct dementia (a series of small strokes). He was 85 at death. Both spent their final years in a nursing home or a memory care unit.

What I can control

Hank with his mother at her memory care unit.

There are no cures for the various forms of dementia that could befall me. Yet, there are actions I can take to reduce the risk or delay the onset of cognitive impairment.

I have written before about reducing the risk of dementia and how my hearing loss is a risk factor that could lead to cognitive decline.

Recently, I read an article in JAMA titled “Lifestyle Enrichment in Later Life and Its Association With Dementia Risk.” Here is part of the summary of the research:

“[M]ore frequent engagement in adult literacy activities (e.g., writing letters or journaling, using a computer, and taking education classes) and in active mental activities (e.g., playing games, cards, or chess and doing crosswords or puzzles) was associated with an 11.0%… and a 9.0%… lower risk of dementia, respectively.”

Author event with Ann Patchett at Square Books, Oxford, Miss.

Keeping my mind active

I read articles like this recent one and wonder, “Am I reducing my risk?” I like to say, “Yes, I am.”

Looking back at my previous blogs about reducing the risk of memory loss, I can check several boxes. I work at vigorous physical activity and try to get enough sleep. Several times a week, I journal and often am on my computer (maybe too often?). Almost weekly, I attend an author event at Square Books or a lecture at the university’s Overby Center for Southern Journalism and Politics or at the Center for the Study of Southern Culture.

All the advice includes staying engaged socially to keep the mind active. Besides church activities, I attend two weekly men’s groups. One is here in Oxford, where we sit around and mostly talk about politics. The other is on Zoom with the group I have been in since 1992.

I like to think I would be doing all this active-mind stuff even if there were no evidence of health benefits. I just enjoy all the activities I mentioned above.

Even my father’s active mind suffered cognitive decline

Hank with his nursing home resident father

All the advice is about REDUCING the risk of dementia, not PREVENTING it. A good case in point is my father. He was a lifelong reader and writer. He authored almost a score of books. Even while in the nursing home, he tried to write a weekly column for publication.

Mom told me that as it became more difficult for Dad to compose a few paragraphs, she suggested they stop making the effort. Dad responded like a typical child of the Depression, “We need the money.” They didn’t need the money, and he eventually gave up on writing.

Even though Dad kept an active mind, he did not “check all the boxes.” He never participated in vigorous physical activity and was a heavy smoker for probably thirty years.

There are enough examples of public figures who ended their days with cognitive impairment, like Ronald Reagan and Pat Summitt. The mental exertion necessary to be President for eight years or to win eight national basketball championships did not prevent memory loss in the end.

My preparing for the worst

Knowing that memory loss could likely be in my future, I have made a few preparations. Like my parents, I have purchased long-term care insurance. They both used every bit of the four years of benefit that paid for their institutional care.

I also recently added an addendum to my living will, instructing my family to withhold hand-feeding if I reach stage 6 or 7 on the Functional Assessment Staging Tool. I have used the addendum put out by End of Life Choices, New York, which is in line with my right to refuse medical treatment. I discussed this Voluntary Stopping Eating and Drinking (VSED) in a previous blog.

Whew! That’s a lot. I think I’ll take a nap — also one of the boxes to check.


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 or on Amazon.

Lessons from Jimmy Carter’s Six Months in Hospice

Posted by

Former President Jimmy Carter continues to teach us how to age with grace and meaning. I blogged previously about his going on hospice back in February. Now, six months later, he is still alive and receiving hospice care at home.

Three lessons we can take away from this phase in his life:

  1. Hospice care can continue longer than six months

To qualify for hospice under the Medicare benefit, a physician has to say, “This patient has, at most, six months to live if the disease runs its normal course.” What happens if the prognosis is wrong and the patient is still alive after six months?

Note the caveat, “if the disease runs its normal course.” Some patients do live longer than is expected. In these cases, the hospice can re-certify that the patient still appears to have six months or less to live.

Some diagnoses are very difficult to guestimate the number of months a patient may have left. For instance, cancers are easier to give a prognosis than dementias. Doctors just do the best they can.

50% of hospice patients are on hospice care for 18 days or less.* 25% receive care for just five days or less. But there are outliers on the long end, with 10% on service for more than nine months. So, Jimmy Carter’s six months does happen more often than you might think.

  1. Hospice care is primarily delivered in the place of residence

Carter home in Plains, Georgia. Photo: Library of Congress

Many people think hospice is a place you go to die. Not true. Hospice is a concept of care. 98% of hospice care is delivered in the patient’s residence, whether that is a private home, an assisted living facility, or a nursing home.

A recent Washington Post article gave a window into life in the Carter home now.

“Jimmy Carter is often out of bed first, waiting in his recliner for his wife to emerge. ‘Rosalynn comes in the room and makes a beeline for this chair and bends over and kisses him,’ said Jill Stuckey, a close friend. They spend many hours sitting side by side.”

  1. Families usually provide most of the caregiving for hospice patients

Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

Many families are surprised that hospice does NOT routinely provide round-the-clock care. The family must provide the bulk of the care. Only 1% of hospice dollars go to what is known as “continuous care,” meaning round-the-clock.

Of course, the Carters have the resources to get the best care at home. They have other perks too. The Secret Service gave the couple a ride to watch the Fourth of July fireworks in their hometown.

Interestingly, Rosalyn Carter has had a passion for providing support for family caregivers. When The Carter Center announced that Mrs. Carter was diagnosed with dementia, they commented, “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Thank you for your service

The Post asked people who knew them what makes the Carters keep going. “Gerald Rafshoon, who was Carter’s White House spokesman, and others believe a key reason the Carters keep going is that neither wants to leave the other.”

The Carters have lived a life of service and continue to provide an example of how to approach the last days. Thank you, Jimmy and Rosalyn!


*Statistics in this blog came from the National Hospice and Palliative Care Organization’s “Facts and Figures, 2022 Edition.”


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 or on Amazon.

A Death Expert on His Own Deathbed: “Joy and Hope and Trust”

Posted by

Two months after he died, Ernest Becker won the 1974 Pulitzer Prize for General Nonfiction for his book The Denial of Death. I guess, since he was dead, he was not a winner, but his book was.

I’ve been thinking lately about Becker and his book and the profound influence they both have had on my life. I referenced his thoughts in a previous blog titled, “Our Struggle with Dying Starts When We’re Toddlers.

Best-selling author, Mark Manson* includes The Denial of Death as one of “7 Books That Will Change How You See the World.” In Manson’s playful way he writes:

If This Book Could Be Summarized in An Image, That Image Would Be: The grim reaper silently laughing to himself watching you build an elaborate Lego set called “Life,” and you turning around and saying, “Stop laughing, this is important!”

The Denial of Death 

I’ll get to Becker’s deathbed below but first a few quotes from his classic. Note that Becker wrote in 1973 just as we were becoming aware that we no longer refer to all humans as “man.” I know better now but I will let his original words stand.

  • “The main thesis of this book is…: the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity—activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.” (p. ix)
  • “The irony of man’s condition is that the deepest need is to be free of the anxiety of death and annihilation; but it is life itself which awakens it, and so we must shrink from being fully alive. (p. 66)
  • “In the prison of one’s character one can pretend and feel that he is somebody, that the world is manageable.” (p. 87)
  • “Modern man is drinking and drugging himself out of awareness, or he spends his time shopping, which is the same thing.” (p. 284)

You may argue, “I DON’T spend any of my time thinking about my certain death.” I think Becker would say, “You just proved my point.”

 Psychology Today and the deathbed conversation

Soon after The Denial of Death arrived in late 1973, Sam Keen, one of the editors at the prestigious Psychology Today magazine, called Becker’s home hoping to set up an interview. Keen explained how the deathbed interview came about: “I called his home in Vancouver to see if he would be willing to tape a conversation. His wife Marie informed me that he had just been taken to the hospital and was in the terminal stage of cancer. The next day she called to say that Ernest would very much like to do the conversation if I could get there while he still had strength and clarity. So I went to Vancouver with speed and trembling, knowing that the only thing more presumptuous than intruding into the private world of the dying would be to refuse the invitation.”

Here are a few quotes from THE expert on death as he lay dying:

  • “Each of us constructs a personality, a style of life or, as Reich said, a character armor in a vain effort to deny the fundamental fact of our animality. We don’t want to admit that we stand alone.
  • “We do anything to keep ourselves from the knowledge that there is nothing we can do.… Well, this is the control aspect of character armor which is so vital to the human being.”
  • “Joy and hope and trust are things one achieves after one has been through the forlornness.”

Keen noticed that Becker kept referring to “God” when divine transcendence had not previously been part of Becker’s writings. The dying man responded:

  • “I don’t feel more religious because I am dying. I would want to insist that my wakening to the divine had to do with the loss of character armor.
  • “At the very highest point of faith there is joy because one understands that it is God’s world, and since everything is in His hands what right have we to be sad—the sin of sadness. But it is very hard to live that.”

Ernest Becker died in March 1974 at age 49. Two months later his book was awarded the Pulitzer Prize.

*Manson is author of The Subtle Art of Not Giving a F*ck, over 8 million books sold.


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 or on Amazon.

The First Stage is “Denial”

Posted by

“Denial is a protective device, a shock absorber for the soul. It prevents us from acknowledging reality until we feel prepared to cope with that particular reality.…  We do not let go of our need to deny by beating ourselves into acceptance; we let go of our need to deny by allowing ourselves to become safe and strong enough to cope with the truth.”  Melody Beattie, The Language of Letting Go

“Denial is a sacred place. Denial allows us to stay in control. It is a ledge we sit on above a cliff. Sometimes we need to stay there a little longer.” Chaplain Rev. John, quoted in “Finding Faith Through Listening,” by Andrea L. Merrill, MD, JAMA Online, July 13, 2023

Denial can cut off meaningful conversations

We were told to take off our hospice name tags before entering the home because the wife didn’t want her husband to know he was dying. On my one and only visit into the home, the man appeared yellow because of the progression of liver cancer. Even his eyes were yellow, and it turned out he was within days of dying.

When I first walked into the home, I sat alone with the wife in the living room. She was very comfortable talking about her husband’s impending death. I asked her, “What is all this about not wearing our pins or talking about death? Does your husband know he is dying?” She said, “Oh, yes, he knows he is dying.” I asked, “How do you know he knows?” She responded, “Because he asked me.” I asked how she responded to him and she had told him, “Not while I’m around.”

I suggested, “What if you had said, ‘Yes, you are dying and I’m going to miss you. We have had a wonderful marriage and I love you.’” She said, “I couldn’t do that. That would be too painful.”

Living in the shadow of a life-threatening illness is difficult. Worse yet, when it becomes clear that there is going to be no recovery, we naturally resist any thought of what really lies ahead. Understandably, this wife wanted to avoid such a painful discussion. That is why we have such a strong urge to deny the reality of the incurable nature of the disease. We want to avoid the emotional pain of saying good-bye. The man died while his wife was at the grocery store—remember she said, “Not while I’m around.”

Denial is normal

Photo by Ben White on Unsplash

Denying the reality of the terminal phase of a disease is normal, expected, and perhaps even necessary. It gets us through the initial shock of such a fate. Acknowledging the truth may cause anger and depression, which are, again, normal responses.

The father of a twenty-nine-year-old son who died of leukemia told me, “I lived in denial of the certainty of my son’s death to the very end. I was completely surprised when he died. I feel so guilty about that denial.” I thought guilt was a strange feeling for such a natural response as denial, so I asked him about that. He said, “I felt guilty because if I had accepted that he was dying, there were so many other things I would have said to him, but I lost that opportunity.”

[This blog post was adapted from my Light in the Shadows: Meditations While Living with a Life-Threating Illness.]


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 or on Amazon.

Words Matter: “Want” and “Need”

Posted by

The ethics committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I was just six months into a part-time chaplain’s position for which I had no training. The arc of my career was set for the next forty years in this one assignment.

Four decades later, I am still learning our words matter.

“Need” implies you have no choice

I read a recent JAMA Online article titled “Reconsidering the Language of Serious Illness,” which illustrates that when healthcare professionals use the word “need,” aggressive treatment is often the result. Example statements from the article:

  • “If her breathing gets any worse, she will need to be intubated.”
  • “He needs a central line, a special IV catheter in his neck, so we can give him blood pressure medicines.”
  • “If she doesn’t make any urine soon, she will need dialysis.”
  • “If she can’t be extubated soon, she will need a trach.”

The article’s authors argue that once you say the word “need,” it implies that the family has no choice but to proceed with the treatment. Who would deny their mother what she NEEDS?

“To need is to lack something essential”

From the article: To need is to lack something essential. As clinicians, we regularly use the word need to think about and describe the condition of patients with acute serious illness. These patients lack something essential for survival, and clinicians have the technologies and therapies to sustain their lives. So need rolls off our tongues as a shorthand to convey our clinical assessments of patients with acute life-threatening illness.”

Their suggestion for changing the language: When a patient is facing a life-threatening illness, instead of saying she ‘needs to be intubated,’ we suggest that clinicians say, ‘Her illness is getting worse. I would like to talk with you about what this means and what to do next.’”

This language change opens the conversation up to more options than just “the need to be intubated.” What does the patient think about their current situation? What are her preferences about being kept alive on a machine? What are her chances that she will ever get off the vent? Intubation is one possible choice, but others are equally possible, including shifting the focus from cure to comfort.

Changing “What does the patient WANT?” to “What does the patient THINK…”

Six years ago, I made a significant change in the language in one sentence in my Hard Choices for Loving People book. Once again, a medical journal article convinced me to change a question I had used for almost three decades. I wrote about this in a previous blog, “You Can’t Get What You Want.

Since the first edition of Hard Choices in 1990, I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. In 2017, I changed it to: “What does the patient think about their current and probable future condition?”

A career using language to help with end-of-life decisions

Soon after I became a part-time nursing home chaplain in 1983, our administration formed an ethics committee. Virginia had just passed a “Natural Death Act,” which gave patients a right in the code to refuse treatment and provided a form (e.g., “living will”) to express their treatment preferences.

The committee included the director of nursing, the medical director, a lawyer, an administrator, and me. In response to the new law, our plan was to inform all patients and their families about advance directives and the option of a “No CPR” order. But who would deliver the information?

The committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I had no healthcare experience and had yet to take basic chaplain training. So, I learned how to talk to patients and families…by talking to patients and families

Over the next year, we went from less than 10% of our patients having an advance directive and/or “No CPR” order to over 80%. And I learned the importance of using my words to help the process along.

We published the first edition of Hard Choices for Loving People seven years later.

[Cover Photo by Kampus Production via Pexels]


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 or on Amazon.

Quality of Life Publishing Logo

Quality of Life Publishing Co. is the proud publisher of Hank’s books, as well as other branded educational materials for health care & end-of-life care.

Copyright 2024, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

Volume Discounts for Branded Book Orders

Minimum quantity for branded books is 100. English and Spanish branded books are sold separately. Click here for more information or contact us with questions.


  • 100 to 249 copies: $4.50 each
  • 250 to 499 copies: $3.50 each
  • 500 to 999 copies: $3.00 each
  • 1000 to 1499 copies: $2.25 each
  • 1500 to 1999 copies: $1.75 each
  • 2000 to 3999 copies: $1.60 each
  • 4000+ copies: $1.45 each


  • 100 to 249 copies: $7.00 each
  • 250 to 499 copies: $4.50 each
  • 500 to 999 copies: $3.50 each
  • 1000 to 1499 copies: $2.50 each
  • 1500 to 1999 copies: $2.00 each
  • 2000 to 3999 copies: $1.85 each
  • 4000+ copies: $1.70 each

Volume Discounts for Unbranded Book Orders

Each title/language sold separately.

  • 1 to 9 copies: $8.00 each
  • 10 to 24 copies: $5.75 each
  • 25 to 49 copies: $4.50 each
  • 50 to 99 copies: $4.00 each
  • 100 to 249 copies: $3.50 each
  • 250 to 499 copies: $3.00 each
  • 500 to 999 copies: $2.50 each
  • 1000 to 1499 copies: $2.00 each
  • 1500 to 1999 copies: $1.50 each
  • 2000 to 3999 copies: $1.35 each
  • 4000+ copies: $1.20 each