Compassionate, informed advice about healthcare decision making

Archive for the ‘Death & Dying’ Category

“Can I do this again?” — Men, Aging, and Performance

Posted by

“They” say men of a certain age are concerned about performance. Last week, while hiking the Big Schloss in 97-degree heat, this crossed my mind as I asked myself, “Can I do this again?”

Sundown on the Big Schloss

My bladder cancer surgery in May canceled a long-planned trip to see my adult children and my teenaged grands. I missed my grandson’s high school graduation and my youngest daughter’s engagement party. Unfortunately, those events can never be duplicated, but I hoped this trip would compensate for lost time.

In the last two weeks, I made the delayed trip to the D.C. suburbs of Virginia, my home from 1978 to 2017. Just like when I traveled the country speaking, once I had a destination, I looked into how I could spend some time in the great outdoors — preferably including wilderness travel.

“Grandpa, how did you get into hiking and backpacking?”

Hank & grands on 2016 hike

I used to take my three grands on overnight backpacking or car camping trips. They have slept with bugs, spiders, mice, snakes, and other inconveniences and even encountered a bear. They were always good sports at the time but have declined invitations to repeat any of these adventures in recent years.

So now on my trips to visit family, I try to plan a meal with just my grandkids and me to get some quality time and have an “ask-me-anything” session. This time, we went to Chili’s right after I returned from an overnight in the woods.

Out to eat with the grands.

Over hamburgers and fries, my grandson asked, “Grandpa, how did you get into hiking and backpacking?” I thought back. It was actually a chance reading of a Redbook magazine article. In 1971, while I was in seminary, I had taken their grandmother to the doctor’s office. This was back before we could occupy ourselves with phones when waiting rooms were piled with old magazines.

Hank, left, and Charles. First backpack trip, 1974

The Redbook article was about a five-day backpacking trip into the backcountry of Yellowstone National Park. The writer was in one of the most visited parks in the country, and they never encountered another human during the whole trip. I said to myself, “I want that.”

Thus, my love of wilderness camping was born in the waiting room of a doctor’s office. It took a while, but my first overnight carry-everything-on-my-back-away-from-roads-and-the-grid trip was on March 1, 1974.

My most recent trip was July 16, 2024.

“Can I do this again?”

As I mentioned, while planning this last trip, I wanted to add a night in the woods amid visits to family and friends. The Big Schloss was an ideal choice, less than a two-hour drive from Northern Virginia. “Schloss” is the German word for castle, and the rocks on the summit indeed look like a castle from below.

No tent, just a tarp, priceless

It is only a two-mile hike and 850 feet of elevation gain to the campsite near the summit. I have probably slept on this mountain thirty times since my first trip there in 1980, when I introduced my then-six-year-old son to backpacking.

While I was a hospice chaplain, I even figured out a way to hike the Big Schloss on a workday in the summer. Because of the long daylight hours, I could leave my last patient at 5 PM, arrive at the trailhead by 7, and set camp by sundown around 9. Then, I would wake at first light in the morning, pack up, drive home, shower, and be at work by 10.

I invited my future son-in-law, Will, to join me on last week’s trip. Though he never backpacked or spent much time in the woods, he said yes. So, we left the trailhead and headed up the mountain together. The first half mile is all uphill, about 600 feet. Next, an up-and-down walk along the ridge that forms the Virginia and West Virginia border. Finally, the last quarter of a mile is all uphill, about 200 feet.

The 97-degree heat, the incline, and the 35 pounds on my back all made this a brutal hike. We made it, but to be honest, it took me several hours to recover. While recovering, we set up our tarps to sleep under and cooked dinner. After dinner we had an enjoyable campfire with some “deep thoughts” conversation.

Who was I trying to convince, “Yes, I CAN do this again”? Will, who is a strong twentysomething? You, who are reading this blog? Myself? The Universe? All the above?

A surprise test

Hank & Will, on the way down from the Big Schloss

It is not just my bladder cancer but my age that thrusts this question upon me. I will NOT be able to do this forever. Stroke, heart failure, or cancer could disable or kill me. Did I just take my last backpacking trip? Perhaps.

I don’t want to make this sound morbid. Au contraire, this is a moment to be thankful for all those wilderness outings, particularly for this most recent one.

Before returning to Arlington, Will and I stopped for breakfast at a diner on Route 11 in Woodstock, Virginia. I congratulated him over coffee, eggs, sausage, biscuits, and grits. “Will, you passed the test. You can marry my daughter.”

Surprised, he said, “TEST? I didn’t know this backpacking trip was a test!”

Oh yeah. It was. For both of us.

[NOTE: I did a short video while backpacking, talking all this. CLICK HERE]

__________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Cancer and Things Done and Things Left Undone

Posted by

Since my bladder cancer diagnosis in May, I have found myself clearing my calendar to allow the next steps in my care to unfold. I am trying to prioritize what I need to do and what can be left undone.

Photo by National Cancer Institute on Unsplash

We met with the doctor last week, reviewed my current situation, and mapped out the next steps in treatment. He is still optimistic that he got all the cancer in the first surgery, even though a second surgery is required to make sure.

Along with the surgery comes weeks of recovery tethered to a catheter and its bag o’ urine. Then, there will be six weekly treatments with more scopes and tests.

In the grand scheme of things, these burdens do not seem too great when I think of patients I have cared for over the years as their hospice chaplain. I am not complaining, nor do I feel life is treating me unfairly. This is all part of life.

Things Left Undone

This newfound status as a cancer patient makes me think of some things that really can be left UNDONE.

I canceled a routine appointment with my optometrist last week. My glasses and “readers” both work fine, even though I occasionally rely on a magnifying glass. I do need to look into having cataract surgery, but that will have to be left UNDONE for now.

I’ve already had my last colonoscopy a couple of years ago. Even before my cancer, I had accepted the guidelines that there was no need to screen for something that would not kill me before my life expectancy of ten years. And… oh yeah… that was my life expectancy before my cancer diagnosis. A colonoscopy can be left UNDONE.

As an aside, I found a GeriPal podcast that discusses stopping mammography somewhere between 70 and 75 because there is no benefit for a woman who has no history of breast cancer and who is not expected to live another 10 years.

Things Done

On the other hand, after being diagnosed with bladder cancer, I started a list titled, “Hope for the best, plan for the worst.” I can still work on these items to render them things DONE.

In the immediate future, I will take a road trip to visit my three children and four grands. I have made this trek two or three times a year for several years. I love driving long distances; this one is over 3,000 miles round trip. I will listen to books and podcasts, see my people, and visit friends, some of them going back to the 1970s. I will also visit places that will bring back so many memories. I want to get this DONE.

What will I listen to on this trip? The Emperor of All Maladies: A Biography of Cancer by Siddartha Mukherjee. I heard of the 2015 book just this week. I probably would not have been interested in 2015 BC — Before Cancer.

I started a project before Christmas and got stuck. My wife had asked for a bound book of photos chronicling our daughter’s life. I have sorted through hundreds of pictures, but many more remain. This needs to be moved onto the DONE list.

Finally, another kernel of an idea floating in my head is a “life story” in pictures. I wrote a previous blog about the “spiritual autobiography” I gave my family on my 75th birthday last year. So, this would expand the autobiography and incorporate photos I have going back my early days. Get ‘er DONE.

“By what we have done, and by what we have left undone”

These words are familiar to Episcopalians. We recite them every Sunday as part of our confession. It goes, “…we confess that we have sinned against thee in thought, word, and deed, by what we have done, and by what we have left undone.”

Full disclosure: I am more of an “original blessing” guy than “original sin” guy. I give little thought to sin and much appreciation for my blessings. Nonetheless, I borrowed the wording of things “done” and things “left undone” to help me incorporate my cancer diagnosis into the living of these days.

This blog is DONE.

[I explored this same content on a video I posted yesterday on YouTube.]

___________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Book Review: Nothing to Fear: Demystifying Death to Live More Fully by @hospicenursejulie

Posted by

Perhaps Hospice Nurse Julie’s book should come with a TRIGGER WARNING: Do not read this book if you do not like the words “Clean, Safe, and Comfortable.” More on that in a minute.

Nothing to Fear: Demystifying Death to Live More by Julie McFadden, RN, is the latest in a long line of books showing the way to a more peaceful and more meaningful dying experience. Why another death and dying book? Why not? Sitting at #8 on the New York Times “Advice” best-seller list, Nothing to Fear is full of advice about navigating the last six months of life under hospice care.

McFadden is better known as @hospicenursejulie to her followers on Instagram (357K), YouTube (432K) and TikTok (1.5M). An influencer with numbers like that has a ready-made public to drive her book sales. It works the other way too. In a way, her fans helped write the book. She often refers to questions she received from followers or experiences they shared with her. Here’s an example:

“Some people ask me, ‘Why is it so important for people to know that they’re going to die?’ It’s a great question. When people choose to learn about their particular illness and what their death might look like, their fears often are eased as they acknowledge what’s happening. The people who are willing to discuss end-of-life issues and to accept that they’re going to die seem to carry about them a certain type of freedom, and they truly live their last days well. Their fear tends to decrease, and they tend to be freer and more full of life, even though they’re dying.”

I listened to McFadden read the text on Audible my first time through. She comes across as the same nurse Julie we know on social media. I don’t think any actress could have captured the conviction, empathy, and compassion we hear in Julie’s own voice. Typical of me, I liked this book so much I bought it a second time in print form. There were too many quotes I JUST HAD to have.

A Very Practical Book

At bottom, Nothing to Fear is a very practical book — a sort of “how to” guide to a peaceful death on hospice. It is user-friendly with lots of lists with numbers or bullets. Here’s one of my favorites from the “Grief” chapter:

THINGS NOT TO SAY WHEN SOMEONE IS GRIEVING

  • “At least she had a long life.”
  • “God needed her in heaven more than we needed her here.”
  • “Everything works together for good for those who love God.”
  • “He’s in a better place.”
  • “There’s a reason for everything.”

Three Themes Stand Out

  1. @hospicenursejulie

    Is the patient “clean, safe, and comfortable”? The answers to this question are always on minds of those on the hospice team. Julie reminds family members to strive to always make sure the patient is clean, safe, and comfortable.

  2. Dying peacefully can be like the process of childbirth. Nurse Julie is not the first to make this comparison. The hospice movement grew out of the same mindset as the “natural childbirth” revolution in the 1960s. Probably the first book to start us thinking about death positively, Elisabeth Kübler-Ross’s On Death and Dying, came out in 1969. Just like a baby “knows” how to be born, the dying body knows how to die. “Listen to the body” we read often in these pages. Again, from nurse Julie:

 

“After years as a hospice nurse, I can share this strange but true fact: our bodies are biologically built to die.

  1. We need to talk about death and dying for a peaceful death to occur. The quote above about why it is important for people to know they are going to die comes from the chapter titled, “Death Is Not a Dirty Word.” In another chapter titled “Advice for the Dying” we find:

 

“When you look death in the face, it loses its power to bully you. If your death has not yet been part of the conversation in your family or in your home, then your loved ones may not know it’s okay to talk about it with you. Bring it up first, so they know you’re okay with it, and when you do, don’t sanitize it. Use all the d-words: dying, death, dead, died.”

Spirituality in Nothing to Fear

As a hospice chaplain, I am always on the lookout for how an author handles things spiritual. Nurse Julie seems to be so typical of the scores of hospice nurses I have worked with. It varies widely, but 25% to 75% of hospice patients decline visits from the hospice chaplain. Therefore, often patients and their families get spiritual support from the nurse.

Throughout Nothing to Fear we see nurse Julie addressing spiritual concerns of her patients and their families. She devotes a whole chapter, “Deathbed Phenomena,” to stories about patients having visions of long dead relatives. Here’s her understanding of these experiences returning to her theme of the metaphor of birth:

“As much as we’d like to, we simply don’t understand everything about these encounters. They’re mysteries. For my part, I can say that my own few experiences have given me nothing but confidence that a better world awaits us. I do believe that there’s an afterlife because of experiences like these.… In many ways, it feels a lot like the wonder of birth. When I get to see a baby being born, I weep from joy. I look at that baby and wonder, ‘Where did you come from?’ When someone dies, I have that same feeling I get when babies are born. It’s a feeling of home. Of comfort.”

In the chapter titled “What the Dying Process Looks Like,” Julie encourages families to pause just after their person dies and allow this “sacred” moment to sink in. In a section headed, “Death Is Not an Emergency,” we find this:

“Whether you’re with your loved one when they die or you discover that they have died after the fact, there is nothing you have to do immediately. Simply notice that what has happened is sacred. Death is a natural part of life, and you have, in whatever way, participated in your loved one’s journey toward this sacred moment.”

This Book Is Just That Good

I place Nothing to Fear up there with Dr. Ira Byock’s Dying Well (1998), Dr. Atul Gawande’s Being Mortal (2017), and Katy Butler’s The Art of Dying Well (2020). This book is just that good. Nurse Julie combines the powerful bedside stories of Ira Byock and the boatloads of practical advice of Katy Butler.

Even with all these wonderful books, we still see a lot of unnecessary suffering at the end of life. Hopefully by exposing the TikTok generation to a more peaceful way of dying, Nurse Julie can help relieve more of that suffering.

___________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

I Have the Same Cancer That My Father Survived, But It Killed My Brother

Posted by

In early March, I noticed blood in my urine. “That’s curious,” I thought. It happened twice in one week, so I went to urgent care. They ran a urinalysis and confirmed, “Yep. You have blood in your urine.” The PA went on to list the possibilities of what could cause this: kidney stones, prostate problems, bladder cancer, or it could be nothing.

I told her my father was treated successfully for bladder cancer at about my age (76), and my brother died from it at age 64. Her first response when I told her about my brother’s early death was, “I’m so sorry.” I took it to mean she was sorry about me losing my brother. That moment of empathy has meant so much to me. She could have gotten all clinical on me, saying bladder cancer does run in families. But she first said, “I’m so sorry.”

I have entered the land of cancer patients.

Visiting my father at the nursing home three years before he died

By the time my father got bladder cancer he was already diagnosed with Parkinson’s and had had a couple of small strokes. He had mobility problems and depended on Mom for much of his daily care. His mind was still sharp, and he continued to write professionally, dictating a history column to Mom each week. He couldn’t type anymore. His cancer was removed from the bladder with surgery followed by flushing with medications. As far as we knew, he never had another problem with it.

But his other conditions forced him into a nursing home at age 81, and he finally died soon after his 85thbirthday. He was demented, incontinent of bowel and bladder, unable to recognize family or interact meaningfully to the world around him.

At the time of his bladder cancer diagnosis, we never discussed the possibility of NOT treating it, given that it was caught early, and the treatment was not burdensome. But surviving cancer allowed his slow decline of nine years toward a merciful death. I am sure, if my father were asked, he would have absolutely wanted to treat the cancer. Even if he could have been told about what his next nine years would look like, I think he would want to be cured of cancer.

My brother, Dennis, at a horseshoeing competition

My brother’s bladder cancer was quite advanced when he was diagnosed. He did seek a cure, but the cancer continued to spread, and he was gone ten months after blood showed up in his urine. Three years ago, I wrote a previous blog where I mentioned Dennis’ death.

Dennis was a robust 63-year-old when diagnosed. He was a farrier by profession, a demanding job shoeing horses. He was constantly inhaling fumes from the forge which probably led to his death. Smoking and exposure to smoke are risk factors that can lead to bladder cancer. My dad was a heavy smoker for half of his adult life.

And me?

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

I’ve joined a group I did not choose. At this point I do not know if I will be my father or my brother. That is, a journey of 9 years from my dad’s diagnosis of cancer to his death by other killers at age 85 or a 10-month, painful journey my brother took from diagnosis to death. Of course, I won’t be Dennis in that I am already 12 years past the age he died.

I am guessing I am like other newly-diagnosed cancer patients, and I entertain the possibility that I could die sooner rather than later. Going to that place does not make me sad — at least, it doesn’t today. According to the National Vital Statistics Reports, 44% of White males born in the U.S. in my birth year, 1948, have already died. We are just two years away from it being 50%. If my end comes in two years, I would be just average.

No reason to begrudge living an “average” lifespan. As a matter of fact, I should be thankful since half my cohort will have already died.

Grateful indeed!

___________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Ambivalent? Please, Make Up Your Mind! Or Not!

Posted by

The old man had come to our nursing home from the hospital in declining health with late-stage dementia. Almost immediately upon arrival, he had a medical crisis. Because he was a “full code” (everything should be done to save his life in a medical emergency), the nursing staff called 911, and he was off to the hospital again. I rode with him in the ambulance.

While waiting for the daughter’s arrival, the ER doc asked me, “What is his code status?” I told him.

Part of my role as the nursing home chaplain was to talk to all new patients and/or their families about advance directives and the possibility of a “No CPR” order. This resident was so new to us that I had no time to contact the daughter, the decision-maker in this case.

Explaining the need for a “No CPR” order

Photo by Kier in Sight Archives on Unsplash

The daughter arrived at the ER and went directly to her father’s side. He was responsive and not actively dying (though he would indeed die within a week). With her permission, I offered a prayer. I then asked her to come into the hallway so we could talk.

She was still dressed in business attire, having rushed over from a corporate or government office in the D.C. metro area. She seemed well-informed, intelligent, caring and involved. An ideal audience for my “No CPR” discussion.

I explained CPR and its lack of success in saving patients in her father’s condition. She seemed to understand and said she wanted her dad to be comfortable, knowing the end was near. I told her she would need to request a “No CPR” order from the physician.

Surprise indecision

Photo by SHVETS production

A few days later, the man returned to the nursing home. To my surprise, he was still a “full code.” I thought, “Didn’t she listen to me? She seemed to want comfort only and no CPR.” I called her and went through my standard spiel about the lack of benefits of CPR.

The daughter stopped me mid-spiel. She said, “I know CPR will not save my father’s life. I want him to die peacefully. But it is just so hard letting go.”

I wrote her off as “ambivalent.” I didn’t think she could make up her mind. Turns out, it was the emotional act of calling the doctor to request a “No CPR” order that symbolized her holding on — not letting go. She was trapped in ambivalence; she didn’t want her father to die…but she wanted him to have a peaceful death.

Frustration with ambivalent patients/families among providers

This story about this patient and his daughter came to mind as I listened to a recent GeriPal podcast, “Ambivalence in Decision-Making.” The two physician hosts discuss the topic with three bioethicists and a doctor. You can listen to the podcast, watch it on YouTube, or read a transcript. Dr. Josh Briscoe discusses this thoroughly in a substack post, “Ambivalence in Clinical Decision-Making: Or, Having Your Cake and Eating it Too.”

Healthcare providers — doctors, nurses, social workers, and chaplains — see this all the time. We can feel frustrated that people can’t make up their minds. Did I not explain it well enough? Do they need more information?

One of the guests on the podcast note, “Ambivalence should be a flag that something’s going on here, something’s important, and we should slow down and pay attention to that.”

They then go on to reframe this indecision as a good thing, saying that ambivalent decision makers “are really sitting with their options and sitting in that tension. And that for us, felt almost like [it was] a good thing. Look how seriously someone’s taking this decision, right? They really want to make sure they get it right and that it’s a choice they can live with.”

At the end of my story, the daughter did request the “No CPR” order. Her dad died a few days later, peacefully.

_____________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Guest on “Seeing Death Clearly” Podcast

Posted by

I am the guest this week on the “Seeing Death Clearly” Podcast with host Jill McClennen. We talk about making end-of-life decisions and my Hard Choices for Loving People book.

Here is the link to the podcast on Jill’s website: https://www.endoflifeclarity.com/seeing-death-clearly-podcast

Listen on Apple Podcasts: https://podcasts.apple.com/us/podcast/seeing-death-clearly/id1661355352?i=1000652400832

Listen on Spotify: https://open.spotify.com/show/6BxGAdDYkkfcXKue3RUQca

_____________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

The “Comfort” of Nothingness

Posted by

“When I’m dead, I’m dead.… and I just sail off into nothingness, and that brings me a lot of comfort. That doesn’t bring everyone comfort but it brings me comfort.”  —Caitlin Doughty, author of Smoke Get in Your Eyes, from an interview on the documentary “Into The Night: Portraits of Life and Death.”

Some people are okay with death being the end.

Their dead father sent a snowstorm

I haven’t run into too many people like that because I have spent so much of my life around folks who believe just the opposite. Many, if not most people, both religious and nonreligious, have some sense that their lives will continue in some form after death. I even had one family insist their dead father sent a snowstorm.

Photo by Ethan Hu on Unsplash

This family had asked me to conduct the funeral service for this man who was one of our hospice patients. I had never met the man nor his family before, since they all claimed they were not religious and did not want a visit from the chaplain. So, he dies and they have no relationship with any church but needed someone to lead the service. Happens a lot in hospice. I was glad to help out.

Through a phone conversation with family members I planned the service which was to take place at the funeral home. They described the recently departed man as very shy and private. He was also a giving and generous man who loved his family dearly.

The night before the scheduled service we had a major snowstorm. I felt I could make it to the funeral home, as did the family, so the service was held as planned. No burial was needed since the man had been cremated.

Only one person showed up for the service besides the few family members.

This lack of turnout did not bother the family in the least. They said, “It’s just like Dad. He was so private that he sent a snowstorm to keep people away.”

“Okay,” I thought.

What do I know? Maybe the recently departed do have the power to send snowstorms. My point is that the belief in living beyond the grave is pervasive whether or not it has a religious aspect to it.

Yet, in my years at the bedsides of the dying and their families, I have gathered enough evidence that some people can be okay with the idea that the last breath is the end. I have seen scores of people face their deaths peacefully even while they have no belief that they are “going to a better place” or are going to be reunited with departed family members.

Many people agree with Caitlin Doughty that death is the end. But, I did find her use of the word “comfort” something I have not heard a lot from those who accept that there is nothingness after death.

I do hear “comfort” from those expecting to see deceased relatives or to be in the presence of God. I can’t tell you the number of times I sat with a family around the bed of a dying relative and someone says, “I don’t know how people do this without faith in God?” Caitlin seems to have an answer to that question.

How is the thought of nothingness “comforting”?

Another way of asking that question is, “How is the thought of nothingness ‘comforting’?”

Photo by Ankit Sood on Unsplash

We know humans, at some point, became conscious beings in our prehistoric past. A major hint of this emerging consciousness is the fact that we buried our dead with tools and other items to help the departed in the next life. This becomes a sign of consciousness because we know our ancient ancestors had the brain capacity to understand that they were going to die and they had figured out a way to deal with it.

Religions grew and flourished as they offered an answer to the mystery of death. What happens to us when we die? The religious answers of life after death do offer many people great comfort.

Let me suggest a two ways that, perhaps, the thought of nothingness is comforting:

  1. For Caitlin Doughty to say that knowing there is nothing after death, “brings me a lot of comfort,” first shows that she, too, has found an answer to this mystery of death and its meaning. There is comfort in settling the question in one’s own mind and heart. Mystery solved. Of course, it is different than a more traditional religious answer but having the question settled is comforting nonetheless.
  2. The second way nothingness after death is comforting grows out of that first reason. If there is nothing after death, that means this life is all there is. And if this is all there is then that makes this life all the more meaningful. This is it. This is not preparation for another life. Therefore, we must live this life abundantly. Enjoy it to the fullest and help our fellow humans by relieving their suffering and contributing to their joy. After all, this is all there is, they say. The incredible wonder and joy of living this one life brings the comfort.

 

As Doughty points out, “That doesn’t bring everyone comfort but it brings me comfort.” I have to take her at her word.

________________________

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.

Photo by Greg Rakozy on Unsplash

A Cave, A Deathbed, and “How You Made Them Feel”

Posted by

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” —Maya Angelou

1975 – Vineville Baptist, Macon, GA, youth group on retreat at Toccoa, GA. Photo by Hank Dunn

My theory about what matters most in the ministry is based directly on Angelou’s quote: It wasn’t so much what I said or did during my 50 years in the ministry. It was more about that certain “something” that made the people I worked with feel a particular way.

I was a youth minister for the first five years after seminary. I loved the work and loved “my kids.” We keep in touch in a Facebook group. I asked the group about our ministry and the Angelou quote.

Interestingly, a few noted specific things I said or some teaching from the books we read. Okay, so maybe people DO remember the things you say. One fellow, who eventually became a teacher and hospice chaplain, commented, “I don’t see it as an either/or but a combination.”

1977 – High school student on a backpacking trip into the Shining Rock Wilderness, NC. Photo by Hank Dunn

Others confirmed my theory that how people felt was most important. Another one of my kids (who also went into the ministry and travels the world training substance abuse counselors) commented:

“Absolutely. Experiences of pleasure, pain, joy, and shame have the biggest impact on the wiring of our brains and, therefore, how our souls interpret and interact with the world. Hank, you created a safe space where we could experience the joy of God and His love for us in nature, community, and individually.”

Sitting alone in a dark cave

I would sometimes take the teenagers into the wilderness as a place of ministry. We rafted on the Chattooga River, where the movie Deliverance was shot. We backpacked all over the north Georgia and western North Carolina mountains. We paddled and camped for three days in the Okefenokee Swamp. And, my favorite, we explored caves.

Part of every caving experience always included time for silent introspection. I would separate the kids along a passageway, take their lights, and have them sit alone in the darkness for 30 minutes. Recently, a participant on one of those trips shared with me the journal he kept at the time. The now-retired pharmacist wrote in 1975:

“I was really nervous before entering the cave. I never really liked the idea from the start. But when all lights were put out, I felt one of the greatest feelings of inner peacefulness and calm.”

1977 – “The Squeeze” in Johnson Crook Cave, AL. Photo by Hank Dunn

Here’s part of a report I wrote about another caving trip with junior high kids, also in 1975:

“There was one girl who was very much afraid to sit alone. I sat her down at the end of the line, where I would be close to her. After approximately five minutes in the dark, she began crying and eventually called me. I went to her, comforted her, told her I was near, and asked her to continue to sit, think, and pray as she remained in her place. She calmed down and completed the half-hour in darkness. She later revealed that it was not so much that she was afraid of the darkness but afraid to face up some of the own things in her life.”

“…people will never forget how you made them feel.”

A deathbed and the gift of presence

1990 – Fairfax Nursing Center. Photo by Hank Dunn

Fast forward 25 years, when I was a hospice chaplain. I was called to the home of a woman dying of cancer. I had made several attempts to schedule a time to see her and her family, but they were always busy and put off letting me in. Now, she was in her last hours. It was time to let the chaplain in.

When I arrived, a family friend sat with me in the living room and explained what was happening. We then went into the bedroom where the woman lay dying. Her husband sat beside her, and a nurse was not far away. I said very few words. There was little to say. I asked the husband if I could offer a prayer. He said, “Please do.” I finished my prayer, and he asked, “Can we say the Lord’s Prayer?” “Of course,” I replied, and we all prayed.

I left the bedside, and the friend followed me to the living room. I stopped to say goodbye, and this woman threw her arms around me, hugged my neck, and said, “You are so wonderful. That is just what we needed.” My first thought was, “Boy, is this job easy.” Anyone who could recite the Lord’s Prayer could have done what I did in that room. But then, I was so grateful to be invited into this moment in this family’s life.

I think Maya Angelou and I are on to something. People always remember how you made them feel.

________________________

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.

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 hankdunn.com 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 hankdunn.com 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.

www.QOLpublishing.com

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.

Black

  • 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

Color

  • 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