Compassionate, informed advice about healthcare decision making

Archive for the ‘Death & Dying’ Category

The Patient Wanted “Peace” — His Wife Wanted “Cure” — What Is a Good Death?

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“I pray for peace,” said the man with advanced cancer. He was a new in-home hospice patient I was visiting for the first time. Turns out, I knew his wife as a coworker at the nursing home from years before — she was a nurse, and I was the chaplain.

We were sitting in the upstairs bedroom of their suburban home. He was in a wheelchair, and I was sitting in front of him. His wife was in a chair on the other side of the room. I often ask patients, “Do you pray?” And like most everyone else, this man replied, “Yes.”

“What do you pray for?” was, of course, my next question. “I pray for peace,” he immediately responded. Across the room, out of sight of my patient, his wife was shaking her head, as if to say, “That’s not what I pray for.”

As we walked down the stairs on my way out, she confided, “I pray for a cure.” That was totally understandable.

This scene came to mind as I listened to a recent GeriPal Podcast titled, “What Makes a Good Death?” I have also explored this topic in a previous blog, “Can a POW Have a Good Death Hundreds of Miles from Home.”

Peace is more important to patients than doctors imagine

Photo by Raphael Nogueira on Unsplash

The “GeriPal” podcast focuses on geriatrics and palliative care. Each week, they feature the latest research on a variety of topics. Last week, they were revisiting the idea of a good death from the perspectives of patients, families, doctors, and other healthcare professionals. They also discussed a new paper comparing and contrasting the idea of a good death as found in Brazil versus the United Kingdom.

One of the surprises in the research is that although patients felt being at peace was important, physicians did not believe that it was that important for a “good death.” Another curious finding was that doctors rated being pain-free higher than patients did. Perhaps that was related to the finding that patients rated being mentally aware as more important and doctors not so much.

Control in Brazil v. the UK

Photo by Marcin Nowak on Unsplash

Another interesting finding was the idea of being in control of the dying process. Folks in the United Kingdom ranked being in control as very important. Responses from Brazil were essentially, “What do you mean by ‘control?’ God is in control.” This, of course, reflects the more religious leanings in Brazil compared to the more secular UK.

The bottom line — listen to patients

Researchers concluded by warning all of us not to make assumptions about a particular patient or their family. Yes, there are often common ideas about what constitutes a “good death.” But this particular patient might not agree. So, we need to stay curious — and ask.

The whole podcast episode is worth a listen or, at least, read the transcript.

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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

Grief and Joy at the Same Time?

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Photo by Chris F, Pexels

Have you ever laughed at a funeral? It might happen more often than you think. I’ve joked that laughing at a funeral is to be expected. After all, what are the first three letters of “funeral?”

Of course, I wouldn’t say this to a grieving family. But when I am sitting vigil with a family in the last hours or days of their person’s life, or when I’m preparing for a funeral, I make sure to ask, “Tell me a funny story about your dad.” Or “Did your mother have a favorite joke?”

Almost always, when a family member gives a eulogy, they include some humor. Even in the saddest of times, people want to remember the laughter.

These thoughts came to mind on a recent camping trip as I was reading Margaret Renkl’s book, The Comfort of Crows: A Backyard Year.

Camping and Reading

Camping and reading

Full disclosure here: Renkl’s book has been on my nightstand for at least six months, maybe for 18, since the Christmas I received it as a gift. I read books more when I am out of cell phone range, where there is no wi-fi, and I am by myself in the woods. So I decided to pack it.

Margaret Renkl is a regular columnist for the New York Times. Her Crows book is a gathering of essays about the natural world she observes in her own backyard near Nashville, Tennessee. Occasionally, she expresses concern about the negative effects of climate change that she can see before her very eyes.

“We are creatures built for joy”

The following paragraphs come on the heels of her expressing her concerns about the world:

“We are creatures built for joy. At the very saddest funerals, we can hear a funny story about our lost beloved, and, God help us, we laugh. We can stagger out of an appointment where a person in a white coat has given us the news we think we cannot bear to hear, and still we smile at the baby in the checkout line clapping her chubby hands at the balloons by the cash register or kicking her feet in pleasure at the sight of a stranger’s smile.

“This is who we are. The very best of who we are.”

You can see why my “grief and joy” antennae perked up upon reading this. Renkl concludes,

Margaret Renal

“The world is burning, and there is no time to put down the water buckets. For just an hour, put down the water buckets anyway. Take your cue from the bluebirds, who have no faith in the future but who build the future nevertheless, leaf by leaf and straw by straw, shaping them into the roundness of the world.

“Turn your face up to the sky. Listen. The world is trembling into possibility. The world is reminding us that this is what the world does best. New life. Rebirth. The greenness that rises out of ashes.”

Margaret Renkl, The Comfort of Crows, p. 57

Photo: Kevin Blanzy, Pexels

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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

Michael Bolton DOESN’T Want to Know His Prognosis

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Why not?

Why wouldn’t you want to know your prognosis if you had an aggressive disease? Wouldn’t it help in choosing treatment options and planning for the future?

These questions came to mind as I read recent stories about 72-year-old pop singer Michael Bolton’s life with a glioblastoma. Although this type of brain cancer is often fatal, Bolton has told his physicians that he does NOT want to know his prognosis.

From a recent article in People magazine:

“Today Bolton is in what his doctors call a ‘survivorship stage.’ He has purposely not been given a prognosis—and his family is choosing to remain hopeful in the face of daunting statistics. The five-year survival rate for glioblastoma patients is just 6.9 percent, and the average length of survival is eight months, per the Glioblastoma Foundation. Still, ‘our doctor told us that he has patients with glio that he has had for 10 years.’ [Bolton’s daughter] Holly says, ‘In my mind that’s my dad.’”

Could this be DENIAL?

In some cases, not wanting to know a prognosis (or flat-out refusing to accept a fatal diagnosis) could be a form of denial.

Once, on my first meeting with a new hospice patient with metastatic cancer, the husband told me, “God has told me my wife is not going to die, so I don’t want any talk about ‘death’ or ‘dying.’ Only positive thoughts.”

I said to him, “I will honor that, but I do have two concerns. I have had some families say to me, ‘We are hopeful and don’t want any opioids because we are afraid of addiction and hastening death.’ So, one concern is about adequate pain control. The other concern is that if you don’t allow death as a possibility you may miss some very important conversations.”

Both the patient and her husband assured me that she would get whatever pain medications she needed and that they have talked about those important things. I believed them on both counts.

Initially, I had the same concerns reading this story. There is no indication that Bolton is not getting the pain meds he may need. But, in choosing not to know his prognosis, is he living in denial of the gravity of his situation? Reading further, I think not.

Bolton said, “It’s a reality of mortality. Suddenly, a new light has gone on that raises questions, including ‘Am I doing the best that I can do with my time?’” This sounds like a man getting ready to die while enjoying what time he might have left (but also not wanting to talk about the amount of time he has left).

The difficulty of making “how-much-time” predictions

I can understand that a person may not want to know their prognosis because predicting how much time a patient has is so difficult. A Facebook friend recently posted, “One year ago (May 23), I was told I had 6 months to live. I’m still here.”

My “real” friend, Tom, was diagnosed with stage 3 esophageal cancer in 2009. He was 51. He did want to know his prognosis and was told the 5-year survival rate was 15-20%. He called me at the time and asked if I would be a pallbearer. “Of course,” I said. He’s still here.

On the other side of this are the patients who enroll in hospice and die just days after admission. Sometimes, the problem is that the doctor waits until the last minute to tell patients the truth, “You are dying.” Then, some patients and families have been told the truth but want to be hopeful and choose not to go on hospice.

Physicians are now encouraged to ask themselves the “surprise question:” Would you be surprised if you heard that this patient had died in the next six months? If the answer is “No. I would not be surprised,” then it is time to make that hospice referral.

@hospicenursepenny’s thoughts on the importance of talking about it

Penny Hawking Smith, R.N. has a great chapter on this topic, “The Need to Know,” in her book Influencing Death. This is what she has to say about getting the “bad news” out there:

“Truthfully, a dying person’s prognosis is often the elephant in the room.… Families don’t want to bring it up to the dying person because there’s a common fear it will take away their person’s hope, making them die faster; I’m here to call bull**** on that. On the other hand, the dying person sometimes doesn’t want to bring it up to their family and bum them out, which, of course, it will. My advice? You’re dying, so they’re going to be bummed either way. At least getting the subject on the table will allow for meaningful conversations that might not happen otherwise.”

Having “hope” while preparing to die

Michael Bolton may indeed have a prognosis longer than six months. I wish this for him and his family. They say they want to remain “hopeful” and not know the prognosis. I say there are other things to hope for besides not dying. Hope that pain is under control. Hope that he can feel comfortable enough to enjoy his family. Hope that, when the time comes, he will enter hospice in a timely manner.

Meanwhile — he’s still here.

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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: “Influencing Death: Reframing Dying for Better Living”

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275K followers on YouTube, 432K on Instagram, and 919K on TikTok. With numbers like these, @hospicenursepenny is an INFLUENCER.

Penny Hawkins Smith, RN, educates and entertains (yes, entertains) her followers with short videos (okay, “reels”) based on her experience as a hospice nurse. She now has brought her earthy take on death, dying, and hospice to written form in her book, Influencing Death: Reframing Dying for Better Living.

Spare me a moment of shameful self-promotion — my Hard Choices for Loving People is one of just four books she recommends in her “Resources” section…I digress.

Like many of us in hospice work, Nurse Penny has learned how to live a better life as she watched her patients and their families navigate the journey unto death. In her words, “Being present with the dying and those they love has brought me joy, happiness, meaning, and purpose.”

HelpMeLeaveMyHusband.com

This outlook did not come easy for her. This book is, in part, a memoir about how a troubled young mother survived her own addictions and reckless living. Her life story is woven into the fabric of a book to help people have a better death and, she hopes, have a better life.

It turns out that Smith was an internet sensation long before TikTok and Instagram. With her first marriage dissolving and having child-rearing and nursing school expenses, she set up a website (no longer active), HelpMeLeaveMyHusband.com. This led to national publicity, including an interview on “The View” and a mention in Time magazine. Who knew?

Practical advice on having a “good death”

The real power in this book comes from the stories of her patients, their families, and her own journey with death in her family. Because of her large platform, Nurse Penny has a good read on what people currently think about death, fear of it, and how to prepare for it.

Questions and comments from Smith’s social media followers appear in Influencing Death, allowing segues to practical end-of-life advice. Here are just a few nuggets of Penny’s wisdom found in these pages:

  • “The earliest signs [that death is near] are eating less, sleeping more, and socially withdrawing.”
  • “[T]he reality is that thinking about our inevitable demise, accepting it, and planning for it are the best ways to have a good death.”
  • “People seem to think that saying words like ‘death,’ ‘dying,’ ‘died,’ or ‘dead’ will cause it to happen. Death is what it is, and calling it by another name won’t change that outcome.”
  • “No, they don’t need to eat. They’re dying, and they aren’t dying because they’re not eating. They’re not eating because they’re dying!”
  • “He, like many, many family members of hospice patients, was worried that he would cause her to die faster by giving her morphine. I’ll reiterate for the people in the back that this couldn’t be further from the truth.”
  • “Being present with the dying and those they love has brought me forgiveness—forgiveness for the people who hurt me and, more importantly, forgiveness for myself.”

“Is there an afterlife?”

When I started work as a hospice chaplain in 1996, two nurses at our agency had authored what became a very popular book, Final Gifts. Maggie Callanan and Patricia Kelley told stories of patients having deathbed visions or telling family members they were going to “take a trip.” It is still selling 33 years later.

Photo by Aamir Suhail on Unsplash

Fast forward to now, when Penny Smith (and two other social-media-influencer-hospice-nurses-turned-authors) address these fascinating phenomena and delve into the question, “Is there an afterlife?” Smith recounts many of these stories in a chapter titled “The Woo-Woo Stuff.”

All these influencer-nurse-authors tell similar stories of dying patients having visions or dreams of dead relatives coming to visit them. These visions are very comforting to patients, although sometimes discomforting to their families. Nurse Penny adds her own experience… read the book to find out how that goes.

Penny is very clear that she does not believe in God, nor does she practice religion. At the same time, she is also clear that observing these deathbed visions and having had her own experience, she believes that we do still exist after death.

Are these visions “real?” That’s not even a good question. They are “real” to the people who experience them. That should be the bottom line.

Thank you, Sergeant

Penny’s story takes us through some very dark places of her addiction journey, including when she spent a night in jail. The next morning, the police sergeant told her, “You are not the same person who came in here last night. You seem very bright. Why are you here? I really hope you can get on the right track because it seems like it would be such a waste if you didn’t.”

I was touched to see him listed with others in the “Acknowledgments” at the end of the book: “The sergeant at the police station, I’m sure I will never see you again, but I do hope if by chance you read this book, you will know how ultimately life-changing your words were.”

I, too, thank the sergeant.

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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

 

Hank on “Death Happens” podcast

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I had a great conversation with Hospice Nurse Penny and Halley Hospice Social Worker  on their great podcast “Death Happens.” You can find it wherever you get your podcasts.

Here is the link to the podcast  on YouTube:

 

 

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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

 

Is This Suicide?

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“If I do this, will it be considered suicide?” This question was posed to me 34 years ago while I was the chaplain at the Fairfax Nursing Center in the D.C. suburbs of Virginia. It came to mind as I read a recent article in The New York Times.

Source: National Inst. of Health

“Dialysis May Prolong Life for Older Patients. But Not by Much,” by Paula Span unpacks the results of a recent medical research study published in the Annals of Internal Medicine. The researchers compared the length of life and quality of life of two groups of elderly patients with advanced kidney disease. One group started dialysis to manage their disease, and another group declined dialysis.

But the group that declined dialysis didn’t just DO NOTHING. Here’s how the NY Times article put it:

“The alternative to dialysis goes by various names — medical management, conservative kidney managementsupportive kidney care. In this scenario, nephrologists monitor their patients’ health, educating them about behavioral approaches, prescribing anti-nausea drugs like Zofran and diuretics like Lasix to reduce fluid retention, and adjusting their doses as needed.”

I contacted my nephrologist friend, Dr. Alvin Moss, at the West Virginia University School of Medicine. He has long been an advocate for treating kidney failure in elderly patients without resorting to dialysis. He said his patients like to call this approach, “active medical care without dialysis!”

I wrote about this topic in a blog post three years ago. Also, if you want to watch a humorous spin on the very serious subject of the for-profit dialysis business go to Dialysis: Last Week Tonight with John Oliver.

Longer life with worse quality of life

It is true that those on dialysis lived longer, on average, about 25 months, where the group receiving active medical care without dialysis lived about 23 months. But the quality of life for the dialysis patients was worse.

The dialysis group spent about two weeks less at home (in a hospital or nursing home) than those getting supportive care. Almost all the dialysis patients had to travel to a center three times a week to be hooked up to a machine for several hours each visit. Yes, they lived 2 months longer, but with greater burdens.

Photo by Harry cao on Unsplash

Here is one patient’s approach to the dialysis decision from the NY Times article:

“Even before Georgia Outlaw met her new nephrologist, she had made her decision: Although her kidneys were failing, she didn’t want to begin dialysis.

“Ms. Outlaw, 77, a retired social worker and pastor in Williamston, N.C., knew many relatives and friends with advanced kidney disease. She watched them travel to dialysis centers three times a week, month after month, to spend hours having waste and excess fluids flushed from their blood.

“‘They’d come home weak and tired and go to bed,’ she said. ‘It’s a day until they feel back to normal, and then it’s time to go back to dialysis again. I didn’t want that regimen.’

“She told her doctors, ‘I’m not going to spend my days bound to some procedure that’s not going to extend my life or help me in any way.’”

Nursing home patient stopped dialysis

 What happened to the patient worried about suicide?

That patient who asked me about suicide? You guessed it. He was on dialysis and had had enough. He wanted to stop the treatment and die peacefully in the nursing home. He was also a very devout Catholic and wanted assurance that stopping dialysis was not suicide.

“Of course not,” I told him. “You will be dying from kidney failure. It will be a very natural death.” He got that peaceful death he wanted.

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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

A Divorce and the Mountain of Grief — Priceless

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How can one mountain hold so much grief and give back so much new life?

A flood of memories came back to answer that question.

“Schloss” is German for “castle”

In my blog and the video I posted last week, I talked about my recent backpacking trip to the summit of The Big Schloss with my future son-in-law. As I shared this story at my weekly men’s group meeting, one of the guys, who has known me for over 30 years, said, “Hank, didn’t you throw your wedding ring off that mountain?”

Well…yes. But there’s a bigger story.

In June 1996, my wife moved out the day after our 26th wedding anniversary. In the following months, I went through all the stages of dying or grief I have witnessed in my patients and their families while I was serving as their hospice chaplain. In the face of an unwanted divorce, I experienced denial, anger, and depression, along with a layer of a sense of betrayal and rejection. And like those families, I was waiting for the last breath, or in this case, a “Final Decree of Divorce” granted by a Fairfax County judge.

I imagined I would stand before a judge in a courtroom and hear them say, “It’s over.” But it didn’t happen that way.

My wife called me two days before the court date to let me know it was happening and asked if I wanted to be there. I said, “Not particularly, but do you have a preference?” She said she would rather I not be there, and it was so.

The court date was October 2nd, 1997. Months before, I had made plans with one of my best friends, James, to go on a one-night backpacking trip starting on October 1st. Destination? You guessed it: The Big Schloss.

A day for an ending and beginning

James had traveled from Atlanta to attend a workshop at the Lost River Retreat Center in West Virginia, only a few miles from the Schloss. I picked him up and drove to the trailhead. We walked the two miles up the mountain and set up camp near the summit.

An excerpt from a piece I wrote about this at the time:

“The end came with a suddenness that did not allow me to plan how I wanted the day to go. What happened was better than anything I could have scripted.… What better way to start the last day of my marriage than with a good friend on a mountaintop, drinking coffee and watching the sunrise.  

“We hiked the two miles into our campsite yesterday and set up camp near the summit. Last night, we sat by the fire and braced ourselves against the cold wind. We talked for hours. James slept in the tent, and I stayed outside so I could keep watching the stars all night long.

James at sunrise

“I woke up at first light and put a pot of coffee on the stove. James soon joined me, sitting on the rock on the edge of a cliff which drops perhaps a hundred feet to the ground below. The darkness was being weakened as the light grew. We sipped our coffee and ate pop-tarts…. This place, the Big Schloss, was home to me.

“James knew what this day meant to me. He mentioned it. We discussed it briefly. He read a Celtic prayer and a scripture. As the judge and my soon-to-be ex-wife were each preparing for their days, we were walking down the mountain. Someone to walk with me. What a wonderful metaphor! Too often, over these past sixteen months since she moved out, I have had a great sense of someone walking with me. Sometimes there was nobody with me, but I was not alone. Now James walked with me on the first day of a new life.”

The Ring Toss

Photo by eyestetix on unsplash

Fast-forward nineteen months to May 1999, and I prepared for yet another trip up the Schloss — this time with another friend who was attending the same workshop at the Lost River Retreat Center. She had told me about a ritual she did to help her process her own sense of grief and anger. She threw her wedding band from her failed marriage into the water off a ferry at the Outer Banks. Hmmm?

Yet again, I wrote of what happened next, this time in June 1999:

“A couple weeks ago, I had a little ritual to symbolize my moving on from my marriage. I was camping with a friend on my favorite close-to-home campsite, the Big Schloss, a rock outcrop on the Virginia-West Virginia border.…

Ritual site for the day of divorce and ring toss

“The air was so clear I didn’t even bring a tent, and we slept under the stars. I brought my wedding band, anticipating a ‘ring toss’ ceremony. After arising in the crisp May air, I took the ring out of my pack. This is the ring my wife had inscribed with the scripture reference for the passage ‘Wherever you go, I will go. Your people will be my people.…’

“I stood on the edge of the cliff, looking down at the trees and rocks below. I held the ring. I was surprised that I felt as emotional as I did. I thought this would be a mere formality, tossing the ring into the wilderness. But I threw it. Another little piece of letting go. It landed somewhere on the floor of an old-growth hardwood forest. The fall leaves will cover it in October, and the winter snows will pack it down further. Next spring, perhaps the dogwoods or redbud will bloom nearby. It’s going to be there for a long time to come.

“I was surprised by the tinge of sadness I felt at the prospect of tossing away this symbol of my marriage. I have been so happy in my alone life. I have a normalcy in the living of my days. I have no desire to be reunited with my ex-wife. So, what was the grief about?

These mountains absorb grief

“I have concluded that everyone experiences a certain amount of sadness and grief in response to any loss. If we have not completed our quota of grief, it will come out at a future date, and almost anything can set if off. So, I held this ring in my hand and got a little more of the sadness out. I won’t have that same exact piece of grief to do over again…that feels better.”

A quarter century has passed since those two events on the Big Schloss. The mountain is still giving me its gifts. I even put up a recent short video about how special this piece of God’s green earth is to me. This place has quite easily absorbed my grief. I’ll be back.

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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

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

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“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

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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

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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

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