Compassionate, informed advice about healthcare decision making

Archive for March, 2022

She Moved Her Hand to my Thigh — THAT was far enough

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Music engaged dementia patients

She put her hand on my knee. I fed her a few more bites of lunch. Then, she moved her hand to my thigh. I placed it in her lap and said, “Eleonor, let’s keep our hands to ourselves.” She looked at me and said, “I didn’t mean anything by that.”

It was just another day in the memory care unit of the nursing home where I was chaplain for twelve years. I had found a way to minister to those who have dementia. Bible studies did not work because these poor souls could not track such a discussion. I could also bring my guitar and sing gospel songs with them.

Hand-feeding became a ministry tool. My mind went back 30 years to my lunchtimes at the nursing home as I listened to a recent GeriPal podcast titled, Understanding the Variability in Care of Nursing Home Residents with Advanced Dementia.

Avoiding Tube Feeding and Hospitalizations for Advanced Dementia Patients

Artificial feeding tube

In their typical entertaining style, the hosts and guests on the podcast discussed the latest research on caring for advanced dementia patients in nursing homes. The researchers wanted to find out the difference between nursing homes that had poor outcomes in the care of the patients and those that did not. The specific outcomes they were looking for were feeding tube use and multiple hospitalizations for advanced dementia patients.

I have written previous blogs about the harmful effects of feeding tube use in advanced dementia patients hereand here. A decline in eating and weight loss is expected in advanced dementia patients. Putting in a feeding tube does not make them live longer and makes their lives so much more miserable.

Likewise, multiple trips to the hospital are a tremendous burden on these patients and do not extend their lives. I previously wrote about my friend whose family refused hospitalization as his dementia advanced. I quoted his wife as the title of my blog, “We didn’t want to put him through that again.”

Good and Bad Outcomes in Nursing Homes

The question for these researchers was, “What are the characteristics of nursing homes that have low feeding tube use and fewer hospital transfers of advanced dementia patients?” They found four differences in the cultures of the facilities with good outcomes as opposed to poor outcomes:

Careful hand feeding

  1. We found their physical environment was drastically different; where those with low feeding tube rates had really a rather beautiful physical environment. The other nursing home had wallpaper peeling off the walls and a strong smell of urine.… Every day, they had a different cooking contest so that there was food throughout the facility, and all day long.”
    2. “We also saw the decision-making processes were different. Whereas the home with the low rate of feeding tube use involved families in decision making. We didn’t see that in the high rate nursing home.”
    3. “We also saw care processes were different. You think the number of staff available to feed people; feeding for people with advanced dementia is very time consuming and takes a lot of hands and a lot of time.”
    4. “Then finally, we saw that their implicit values were different. We saw that the nursing home with a low rate of feeding tube use really valued comfort and valued keeping people in the facility.… Whereas the nursing home with the high rate of feeding tube use were more concerned with regulations, making sure that they didn’t get any dings on their surveys, and were really concerned about maintaining people’s weight.”

 

In my years at the nursing home, I would often go to the memory care unit at lunch and tell the nurses I would like to help feed patients. I clarified, “I don’t want any spitters or chokers.” It became a ministry for me. It turns out, thinking of this podcast, I was helping reduce the use of feeding tubes.

Eleonor was the only flirt I encountered in my years feeding patients. She and all the others deserved just a little time for hand feeding. I was glad to be part of such a caring culture.

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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.

 

“God has a lot of explaining to do.”

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The daughter started her eulogy, “I am so angry. God has a lot of explaining to do….” I sat there, stunned, now wondering how in the world I could follow such a performance.

I’ve had the opportunity to officiate many funerals over the years. This was supposed to be one of the “easy” ones. The dead man’s family had a relative who once was a member of my church in Vienna, Virginia, back in the day. None of the family attended that church now — or any church. So, when the man died suddenly of a heart attack at 64, they turned to us for a minister to conduct the service — kind of a rent-a-preacher.

Our pastor was out of town, and it fell to me to fill in. It sounded straightforward enough. They just needed me to be an emcee, so to speak. The daughter would do a eulogy, and we would open the floor for others to give tribute to the recently departed.

As I met with the daughter and granddaughter to plan the funeral, they made it clear that this family was not religious and did not want a lot of God-talk. They agreed to a prayer and Psalm 23. That was that. No sermon. Little religion. I would just show up at the funeral home, conduct the service, get paid, and go home.

I walked into a whole new world

When I entered the funeral home before the service, I walked into a whole new world (for me, at least). At the front of the chapel, a NASCAR flag draped the casket. The deceased’s helmet sat on top — a tribute to his years as a driver on the small-town racing circuit. Scores of people milled around, some laughed, some cried.

Vince Gill

Overhead speakers pumped in country music. Vince Gill sang, “I know your life on earth was troubled / And only you could know the pain… Go rest high on that mountain / Son, your work on earth is done.”

People took their seats in the pews, and I started the service with a few opening remarks. Then it was the daughter’s turn. “I am so angry. God has a lot of explaining to do. My father was a good man. He had no enemies. He loved his children and grandkids. He worked hard and provided for us. God has a lot of explaining to do.”

This was no time for theological argument

As she spoke, I sat there running through my mind things to say to offer another view of her father’s sudden, unexpected death. I thought about referencing Rabbi Kushner’s When Bad Things Happen to Good People. Kushner believed some things, including some deaths of people we love, just happen at random — a belief I share. But obviously, this was not the time nor place to get in a theological argument.

Then the wisdom of Fr. Seamus O’Reilly came to mind. As he talked to his parishioners about the AIDS epidemic in the 1980s, which some Catholics believed was punishment for sin, the wise priest said:

“God always forgives.
“Humans sometimes forgive.
“Nature never forgives.”

The man had died from a malfunction of his heart. Nature requires that our hearts pump life-giving blood in our veins. This man died of natural causes. “Nature never forgives”? No, that wouldn’t do.

Bless her heart — she was deeply grieving

The daughter’s angry tone did soften partway through her speech. It was clear she was an adoring daughter. She gave a touching and loving tribute to her father, as good a eulogy as I had ever heard from a family member. But she ended where she began, “God has a lot of explaining to do.”

When my turn came, I know I started with, “Death is always a mystery…” and kept it brief. I was speechless after witnessing this woman’s pain. I think everyone else was speechless, too, because few spoke when I opened the floor.

I’m always amazed when those who claim not to be religious will often blame God for tragedy. The funeral could have been a wonderful opportunity to be thankful for the great gift of the time she had with her father. But, bless her heart, she was deeply grieving the loss of her beloved father. I felt so sorry for her that her hurt had turned to anger.

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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.

Having a “Happy Death” — How weird is THAT?

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Recently, Roman Catholic Pope Francis referred to Saint Joseph as the “patron of a happy death.” Here’s the problem: I usually associate happiness with smiles, laughter, and a sense of the lightness of life. “Happy” and “death” are hard for me to connect.

The Pope stood before a General Audience and introduced the phrase “happy death” in the first words he spoke about Joseph (you know, Joseph, the husband of Mary and earthly father of Jesus). He never again used the word “happy” in his brief remarks.

What is it about the word “happy”? Why is it so hard to associate it with death and dying?

I want to drop off a “happy”

Three years ago, we moved to the Deep South in the hill country of Oxford, Mississippi. Here we might get a call from a friend, “Y’all going to be home? I want to drop off a happy.” That means she’s going to bring over a gift. It might be fresh-made pimento cheese or a potted plant. Let me tell you — in Oxford, if you tell someone you are feeling sick, you will get more hospitality than you can imagine. People will be dropping off happys all day.

Then, of course, “happy” is enshrined in the Declaration of Independence with the words, “inalienable rights of life, liberty and the pursuit of happiness.” An earlier draft had the words “pursuit of property.” Even today, many people assume accumulating worldly treasures and wealth will make you happy. From surveys, we find out the very wealthy are not any happier than those of more modest means. Once you move out of poverty into a stable financial situation, you are as happy as you will get.

Jesus and Mary as the “hospice team”

So how did Pope Francis associate Joseph with a happy death? As far as we know, he died while Jesus still lived at home before starting his ministry. The assumption is that the dying Joseph was cared for by Jesus and Mary. They were on his “hospice team,” so to speak. I guess you could also assume you’d have a happy death having Jesus and Mary as your caregivers.

Then Pope Francis goes on to discourage prolonging dying with overtreatment. He encourages relieving suffering with pain medications and mentions palliative care. These are elements of what we today call a “good death.”

Maybe not a “happy” death but a “good” death

Recently, I wrote a blog and shot a brief video where I explored the components of a good death in the 19thcentury. For obvious reasons, the elements of a good death in first-century Palestine, on an American Civil War battlefield, and today in a hospital have changed. We may have more tools now to control pain, but at the same time, dying can be unnecessarily prolonged by being hooked up to machines.

It doesn’t matter whether you call it “happy death” or “good death.” The hope is that we can have the best death we could imagine. Most likely, that will involve having family gathered around, being free of pain, and in a place of our choosing.

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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.

Ending Cancer Screenings at MY Age

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I have entered a medical-screening twilight zone. When I was in my 60s, I always got colon and prostate cancer screenings. Now, at 74, I am thinking about stopping the screenings.

Photo by Hush Naidoo Jade Photography on Unsplash

JAMA Internal Medicine recently published a research letter — “Comparison of US Cancer Center Recommendations for Prostate Cancer Screening With Evidence-Based Guidelines.” The guidelines recommend that all men 50–70 years old have an annual screening, regardless of their risk factors for prostate cancer. They suggest the patient and clinician share the decision to do this screening.

The clinician should also inform the patient of both the risks and benefits of the screening. There are downsides to prostate cancer screenings at any age — false positives, misdiagnoses, and overtreatment. Treatment can cause urinary, bowel, or sexual function problems — things I would rather avoid.

Why stop at 70? Turns out, the research shows that annual screenings of men with no other risk factors for prostate cancer do NOT reduce their chance of dying of all causes. In other words, both men who did and did not get screened lived about the same number of years.

My greatest fear is dementia

My greatest fear is that I spend my last years with Alzheimer’s, fully demented and a great burden to my family. Once I get that diagnosis, I would welcome an earlier death by cancer.

Years ago, I heard the story of a woman in a nursing home who no longer recognized her family because of dementia, and she had a mastectomy. They saved her life so she could get more demented.

I did not know this woman and her family well enough to hear about their decision-making process. Perhaps, the patient had stated before losing her mind that she wanted everything done to keep her alive. Maybe, her physicians told the family they had to do the surgery and gave them little choice.

I do not judge this family and their decisions. I take it as a warning for my family and me.

In my case, let the cancer grow

If I live to my 90s but am confined to a wheelchair in a memory-care unit, I do NOT want to be checked for cancer. We do not allow euthanasia in this country, but we do respect a patient’s right to refuse treatment. For me, in the presence of dementia, I would want cancer to run its course. Perhaps this could save my family years of heartaches.

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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.

When a Wartime Death Brings Complicated Grief

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FORT BLAKELEY, ALA. March 1, 2022: What if your teenage son went off to war — fought in one battle — died in that battle — and then you find out his death was actually after the war had ended — AND your side lost the war? Today, we would say parents of these dead soldiers would have complicated grief. Indeed.

Alabama built a state park surrounding the site of the Battle of Fort Blakeley. Tonight, while camping, I will be sleeping in that park on the earth that received the blood of hundreds of dead and wounded Americans. That was in April, 1865, and this fort was the last line of defense for the vital port city of Mobile.

“Boy Brigade”

Display at battlefield

Late in the war, the Confederate States expanded the draft to include younger and older men. So, men in their forties and fifties were conscripted next to teenagers. There were so many teens in two Alabama infantries that some referred to them as the “Boy Brigade.”

Outnumbered 16,000 to 4,000, the Southern troops, including the Boy Brigade, built breastworks still visible today. April 9th was the first – and last – day of combat many young soldiers faced.

The final assault of the U.S. Army on the fort began at 5:30 PM on April 9th. But the Civil War effectively ended about two hours earlier when Lee surrendered to Grant at Appomattox in Virginia. News traveled slower then, and those poor souls fought a battle that had nothing to do with the outcome of the Civil War.

Complicated Grief

Many factors can complicate grief. Even in today’s world, many ponder the meaning of the death of someone they loved. Deaths by suicide, murder, drunk driving, or other accidents complicate the grief process that is painful even in the most “normal” circumstances.

Then there are the deaths of people with whom we have a conflicted relationship. The passing of a physically abusive father, a sexually exploitive uncle, or a verbally abusive mother can make the grief process most difficult.

I remember the daughter of a patient once said, “My mother never said, ‘I love you’ to me.” She told me that as we were making preparations for the mother’s funeral. Any chance of hearing, “I love you,” also died. We truly don’t know what goes into another’s grief.

All of a sudden, her story made sense

Another family comes to mind when I think about complicated grief. I was sitting vigil at a nursing home patient’s bedside with her daughter. The patient seemed like so many of these sweet old ladies who came to us with advanced dementia. Over the months that the patient was with us, I gathered her daughter’s story on her daily visits.

Photo by Ben White on Unsplash

At age 16, fifty years earlier, the daughter and her husband-to-be eloped under cover of darkness. She hid a packed suitcase under the front porch as she made her plans. Her younger brother happened upon the suitcase but kept the secret.

In the silence of our vigil, the daughter blurted out, “God. She was a hard woman.” Immediately, I thought to myself, “Now, I understand. The woman was abusive. THAT explains everything.”

When the daughter broke the silence as we sat by her mother, this story finally made sense. She was abused. The brother knew it. He conspired to help his sister make her escape. Yet fifty years later, here she was, sitting beside her mother as she lay dying. Complicated.

My mind comes back to those Confederate parents whose teenage sons went off to war, fought in one battle, and died in that battle after the war was over…and their side lost. Talk about complicated grief.

Grief can be complicated, indeed.

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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.

 

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