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!

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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

The post Top Five New Year’s RESOLUTIONS To Prepare for the END OF YOUR LIFE 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

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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

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

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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

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

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!

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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

The post I Have the Same Cancer That My Father Survived, But It Killed My Brother first appeared on Hank Dunn.

Credit: Boston Scientific

More than 200,000 pacemakers are implanted each year in the U.S. 70% go to patients over age 65, many of whom see improved quality of life and probably have their lives extended.

Recently, someone contacted me because she has a friend “who is struggling with the decision for her 93-year-old mother who has dementia regarding the insertion of a pacemaker.”

I am not a doctor and do not like to give medical advice, but I do have some questions for the family to ponder as they make this decision.

Questions:

• Did the patient ever indicate her feelings about life-prolonging medical procedures in the condition she now finds herself?
• How did the patient feel about her dementia?
• Is she happy with the state she finds herself in?
• What would you want if you were her?
• What would the patient think about living longer, knowing she will lose more of her mind and become more and more feeble?
• Has the family considered enrolling the patient in hospice and focusing on the comfort of the patient?
• Would the patient rather die than continue to decline into more memory loss?

Care of dementia patients at the end of life is personal for me

Hank and his mother at her memory care facility

I blogged previously about my parents’ deaths in “How Did Your Mom Feel About Her Dementia?” and “A Tale of Two Docs.”

Both of my parents died with dementia. We were always looking for procedures we could NOT do to allow a peaceful and sooner death. For example, we decided if either came down with pneumonia, we would not seek a cure but would keep them comfortable. My brother, sister, and I felt we handled their ends how THEY would have wanted.

Hank with his nursing home resident father

After a year and a half in a memory care unit, my mother fell and fractured her pelvis. This is a known death sentence for a dementia patient. We didn’t even have her sent to the emergency room. The hospice doc ordered pain medication, and I flew from Virginia to Colorado to be with her.

After more than four years in a nursing home, declining from Parkinson’s and strokes, my father could no longer be hand-fed. There was NO discussion about a feeding tube. I flew to Tampa to be with him, where he died six days after his last intake of food or water.

Sometimes, questions are better than answers.

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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.

The post A Pacemaker for a 93-Year-Old with Dementia — I Have Some Questions first appeared on Hank Dunn.

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

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

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

What I can control

Hank with his mother at her memory care unit.

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

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

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

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

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

Keeping my mind active

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

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

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

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

Even my father’s active mind suffered cognitive decline

Hank with his nursing home resident father

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

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

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

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

My preparing for the worst

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

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

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

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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.

The post Dementia? I’d Rather Not first appeared on Hank Dunn.

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.

2. 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.”

3. 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!

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

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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.

The post Lessons from Jimmy Carter’s Six Months in Hospice first appeared on Hank Dunn.

But, I do think of “things to do”. They come to mind, and I say to myself, “I really need to do this before I get so disabled or demented that I can’t finish them.”

For what it’s worth, here are some of mine.

• Update our wills. It has been years since we last did this. We’ve moved to a new state—TWICE—Florida and now Mississippi. We’ve launched our daughter out from under our roof (never out of our hearts). There have been many other changes in our situation that make this update necessary.
• Update our advance directives. I wrote a blog recently about Voluntary Stopping Eating and Drinking (VSED) by advance directive. I want to add instructions on when to stop hand feeding me if I have advanced dementia. Putting this in writing can be very easy to do with samples I linked in the blog. Then, of course, we need to have two friends over to witness my signature.
• Review beneficiaries on retirement accounts. This one we have done recently but I’ll check again just to make sure they say what I want them to say.
• Continue to gather my “memoir” for my kids and grands. I wrote a blog around my birthday in 2021 about “keeping your regret list short.” It was kind of a “bucket list” thingy and I mentioned the notebooks I had gathered for my children and their children. Well, I have written more since then, so I need to keep on gathering. I also print my favorite quotable-quotes file (36 pages long). Interestingly, I found among dad’s papers, a notebook he kept of his favorite quotes, probably dating from the 1950s. When I started my own compilation of quotes, I had no idea he had done the same.
• Finish my “spiritual autobiography.” I am in a small group at church, and we all are writing a spiritual autobiography to share with the group. I have a draft and will continue of refine it. I want to get it in a form suitable to give a copy to each child and grandchild. My spiritual life is so central to who I am, and I want to let those who love me know what is bubbling up inside. I don’t think they have any idea.

These are all doable items — and so important to me.

What about you? What’s bubbling inside on your important “things-to-do” list.

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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.

The post New, New Year’s Bucket List first appeared on Hank Dunn.

Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

• Require around-the-clock assistance with daily personal care.

• Lose awareness of recent experiences as well as of their surroundings.
• Experience changes in physical abilities, including walking, sitting, and — eventually —  swallowing.
• Have difficulty communicating.
• Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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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.

The post VSED by Advance Directive — An Alternative to Prolonged Dying first appeared on Hank Dunn.

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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.

The post I’m On a Podcast This Week first appeared on Hank Dunn.