Photo by Tim Mossholder on Unspalash

#5 Hang out with OLD, SICK, and/or DYING people.

                  Volunteer with a hospice or nursing home. Better yet, visit seriously ill relatives. You will learn a few things about the end of life, and it will mean a lot to someone else.

#4 PUT IT IN WRITING, resolve to do those advance directives you’ve been putting off.

                  Go to caringinfo.org to download an advance directive for your state. The MOST IMPORTANT piece of paper is the “healthcare durable power of attorney.”

#3 Consider a “DEMENTIA advance directive” addendum.

                  I did this in 2024. For me, it was a Voluntary Stopping Eating and Drinking or VSED addendum to my already existing advance directive. My instructions are that hand feeding be withheld if I progress into severe advanced dementia.

#2 TALK to your family about your end-of-life values.

                  For example, tell your family if it is more important to you to be kept alive on machines no matter the quality of life or, conversely, if you would rather not have your life prolonged artificially if you have a serious illness with little chance of recovery.

#1 Assume a NONJUDGEMENTAL stance

                  This is for all areas of life but in the area of end-of-life decisions, if you have been putting off completing an advance directive, don’t feel guilty that you delayed. Just do it without judgement. Or, if have regrets about a decision you made on behalf of someone you love, be gentle on yourself. WE ALL ARE DOING THE BEST WE CAN. This is a mindfulness practice for all of life — being nonjudgemental about events, people, and the things people do.

HAPPY NEW YEAR!

__________________

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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The Square, Oxford, Mississippi

A PUBLIC SERVICE ANNOUNCEMENT

During the holidays, not everyone is all joyful, all the time. We may sing, “Joy to the World,” but some hearts are heavy.

Maybe your person has died this year, and this is the first Christmas without them. Maybe they died 25 years ago and every Christmas since brings a sadness.

Maybe you can’t be with the one you love. Your heart is in another city. [For those of a certain age, complete the song lyrics, “love the one you’re with.” I digress.]

The message we get from our “friends” social media and TV commercials and “holiday specials” streaming our way is that everyone is happy, even joyful. What’s wrong with you?

My message?

If you are feeling joyful, by all means, enjoy yourself. Spread your joy. God knows we need it.

At the same time, keep in mind, there is a lot of grief and sadness out there. Comfort the broken-hearted. Give space to those who need some. Even the Messiah in the Hebrew scriptures was thought to be “a man of sorrows and acquainted with grief.”

The post Happy Holidays? Joy and Grief Collide first appeared on Hank Dunn.

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.

__________________

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 post The Patient Wanted “Peace” — His Wife Wanted “Cure” — What Is a Good Death? first appeared on Hank Dunn.

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

__________________

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 post Grief and Joy at the Same Time? first appeared on Hank Dunn.

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.

__________________

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 post Michael Bolton DOESN’T Want to Know His Prognosis first appeared on Hank Dunn.

I was 40ish, he was 90ish, and for the life of me I could not understand what the old man was doing.

It was not totally out of the ordinary for men to do strange things at the nursing home where I was chaplain. One man got out on the roof from the second floor, threatening to jump to his freedom. A nurse crawled out, at great risk to herself, and talked him back in. Another wanted to marry a female resident, much to the consternation of both families. There was no wedding, but the romance continued.

What’s the point?

So, the 90ish-year-old man who gave me pause was quite innocent compared to all this. His wife of over 60 years said he was somewhat boring. She was 19 when they married, he 29. They had one son. It was during the Depression, and he had a good job. He was a schoolteacher all his working life. She confided to me as we planned his funeral, “I don’t think I ever loved him.” I found that so sad.

Photo by Jace & Afsoon on Unsplash

When I would pass the old man’s room he was often bent over a record player, listening to books on vinyl from The Library of Congress, which sends these to the blind and infirmed. I remember he liked listening to history books.

“Why?” I asked myself. “What’s the point?” (Yes, horrible ageist thoughts.) His productive working life had long since passed. He was not part of a book club. He would be dead in months or, at most, the next two years. Why was he doing this?

The future of books on vinyl

Fast forward to me at 70ish – 77, to be exact. I started listening to books on Audible or those I can download for free from our public library. A couple times a year I visit my kids and grands in D.C. All that driving time has help me “read” twelve books already this year.

Some of these books are professionally oriented to my work, like Death Is But a Dream, by Dr. Christopher Kerr and @hospicenursepenny’s Influencing Death (I actually read the paperback version so I could write this book review). I suppose there is still a purpose for some of my reading.

Most of my reading falls in the pleasure category, which includes some of my favorite authors: Recollections of My Non-Existence by Rebecca Solnit and Unsolaced: Along the Way to All That Is by Gretel Ehrlich. Then some “freebies” from the library: My Southern Journey: True Stories from the Heart of the South by Rick Bragg and a classic, Travels with Charley: In Search of America by John Steinback.

So, what is the difference between me and the old man? I am able-bodied, he was not. I can tell others about what I am reading, he kept it inside because no one seemed to care. But now I can see we’re more similar than 40ish-year-old me would like to admit.

Decades later, that old man is showing me things that are so fascinating about our human existence. We don’t need a purpose or reason to seek intellectual stimulation. For better or worse, nowadays we often to turn to social media or television to satisfy this hunger. He turned to books.

I am the old man at the record player

Photo by Alex Boyd on Unsplash

The technology has changed. There are no more record players. I listen to my books transmitted from my phone directly into my brain through a surgically implanted cochlear hearing device. At 77, I am still curious about the world and my place in it. I hope this never ends.

My ageism toward the old man bent over the record player still nags at me. I wish I had been kinder to him. I wish I had made the effort to engage him in conversation about what he was “reading.” His hearing loss made dialogue difficult. He was just curious about the world. He wanted to feed his mind.

Now, I am the old man at the record player… and I like books on history, too.

__________________

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 post I Am the Old Man at the Record Player first appeared on Hank Dunn.

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.

__________________

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 post Book Review: “Influencing Death: Reframing Dying for Better Living” first appeared on Hank Dunn.

I discussed VSED in a previous blog post here.

Here is the link to the podcast on Jill’s website.

Here is the link to Apple Podcasts

__________________

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 post New Podcast with Hank — “Seeing Death Clearly” on nutrition and hydration first appeared on Hank Dunn.

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:

__________________

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 post Hank on “Death Happens” podcast first appeared on Hank Dunn.

Hand feeding on the memory care unit

It was lunchtime on the memory care unit of the nursing home where I was chaplain. I was always looking for ways to minister to these poor souls who were losing their minds. What might work for more oriented patients, like a Bible study, was no good here.

Over my years there, I learned to feed the dementia residents who couldn’t or wouldn’t feed themselves. After all, Jesus did say, “I was hungry, and you gave me food; I was thirsty, and you gave me something to drink.” Although I did prefer patients who were not prone to choke or spit their food at me.

Voluntarily Stopping Eating and Drinking

The beginning of Hank’s “Dementia” addendum to his Advance Directive.

I previously wrote about hastening death by voluntarily stopping eating and drinking (VSED), titled She Fasted to Hasten Death. It was the story of a patient with decisional capacity who chose to end her life sooner rather than live with what she felt were too great of burdens.

But what of advanced dementia patients, who all need help with feeding and can no longer “choose” to hasten their death? I wrote another blog, VSED by Advance Directive — an Alternative to Prolonged Dying, about how to write an advanced directive (AD) indicating to your caregivers to stop hand feeding when you get to the last stages of the disease. I personally have such an advance directive.

Problems with VSED by Advance Directive

It sounds so simple: I want a peaceful death not dragged out over multiple years. So, I wrote instructions to stop hand feeding if I decline to the last stages of dementia. But there could be problems following my instructions:

1. State regulations require addressing weight loss. If I am in a facility and am losing weight because hand feeding has been stopped, the administration might worry state regulators would not look too kindly at that.
2. Caregivers might refuse to carry out my wishes. My family or professional caregivers might feel uneasy withholding feeding when I still open my mouth to eat and drink.
3. Honoring wishes. I wrote the advance directive when I was healthy and of sound mind. I know when I get to end-stage dementia, I will not remember my desire to hasten my death. So, demented Hank is still willing to eat and drink. Who do you honor? Competent previous Hank or demented current Hank?

Minimal Comfort Feeding

Screenshot

A recent article in the Journal of Pain and Symptom Management reports on “minimal comfort feeding” as an alternative to VSED by AD. Titled “‘Mr. Smith Has No Mealtimes’: Minimal Comfort Feeding for Patients with Advanced Dementia,” The article is available for free.

The authors identified three possible approaches to advanced dementia regarding feeding:

1. Comfort Feeding Only. Attempt to feed the patient on a regular basis but give no more food and liquid than is comfortable. Advanced dementia patients can live for years with this approach.
2. Minimal Comfort Feeding (MCF). Provide the patient only as much food and liquid as necessary to avoid discomfort. With this approach a patient might live just weeks to a few months.
3. Stopping Eating and Drinking by Advance Directive. No food or liquid at all. The patient will live just days.

The second option would be especially appropriate for the “patient with advanced dementia who previously expressed a wish to avoid living with advanced dementia.” MCF also addresses the problems with VSED by AD I listed above. The case study patient in the journal article did not put his expressed desire to avoid prolonged hand feeding in an advanced dementia condition in an advance directive.

Withholding ALL food and fluid does have uncomfortable symptoms like a sense of thirst and hunger. MCF addresses these symptoms by only giving enough food and fluid to avoid discomfort but not so much to sustain life for what could be years with comfort feeding.

There are morally acceptable ways to avoid prolonged dying, perhaps for years, by pursuing “voluntarily stopping eating and drinking by advance directive” or by “minimal comfort feeding.”

I feel good about the prospects for my last days should it come by dementia.

__________________

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 post Do we honor Competent Hank or Demented Hank? first appeared on Hank Dunn.