June, 2024 | Hank Dunn

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

Posted June 27, 2024 by [email protected]

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

@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.
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.”

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).

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

Posted June 20, 2024 by [email protected]

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 85^thbirthday. 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!