Advance Care Planning

Compassionate, informed advice about healthcare decision making

Archive for the ‘Advance Care Planning’ Category

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

Posted July 26, 2024 by [email protected]

“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

Posted July 12, 2024 by [email protected]

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 75^th 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

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!

___________________

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

Ambivalent? Please, Make Up Your Mind! Or Not!

Posted May 3, 2024 by [email protected]

The old man had come to our nursing home from the hospital in declining health with late-stage dementia. Almost immediately upon arrival, he had a medical crisis. Because he was a “full code” (everything should be done to save his life in a medical emergency), the nursing staff called 911, and he was off to the hospital again. I rode with him in the ambulance.

While waiting for the daughter’s arrival, the ER doc asked me, “What is his code status?” I told him.

Part of my role as the nursing home chaplain was to talk to all new patients and/or their families about advance directives and the possibility of a “No CPR” order. This resident was so new to us that I had no time to contact the daughter, the decision-maker in this case.

Explaining the need for a “No CPR” order

Photo by Kier in Sight Archives on Unsplash

The daughter arrived at the ER and went directly to her father’s side. He was responsive and not actively dying (though he would indeed die within a week). With her permission, I offered a prayer. I then asked her to come into the hallway so we could talk.

She was still dressed in business attire, having rushed over from a corporate or government office in the D.C. metro area. She seemed well-informed, intelligent, caring and involved. An ideal audience for my “No CPR” discussion.

I explained CPR and its lack of success in saving patients in her father’s condition. She seemed to understand and said she wanted her dad to be comfortable, knowing the end was near. I told her she would need to request a “No CPR” order from the physician.

Surprise indecision

Photo by SHVETS production

A few days later, the man returned to the nursing home. To my surprise, he was still a “full code.” I thought, “Didn’t she listen to me? She seemed to want comfort only and no CPR.” I called her and went through my standard spiel about the lack of benefits of CPR.

The daughter stopped me mid-spiel. She said, “I know CPR will not save my father’s life. I want him to die peacefully. But it is just so hard letting go.”

I wrote her off as “ambivalent.” I didn’t think she could make up her mind. Turns out, it was the emotional act of calling the doctor to request a “No CPR” order that symbolized her holding on — not letting go. She was trapped in ambivalence; she didn’t want her father to die…but she wanted him to have a peaceful death.

Frustration with ambivalent patients/families among providers

This story about this patient and his daughter came to mind as I listened to a recent GeriPal podcast, “Ambivalence in Decision-Making.” The two physician hosts discuss the topic with three bioethicists and a doctor. You can listen to the podcast, watch it on YouTube, or read a transcript. Dr. Josh Briscoe discusses this thoroughly in a substack post, “Ambivalence in Clinical Decision-Making: Or, Having Your Cake and Eating it Too.”

Healthcare providers — doctors, nurses, social workers, and chaplains — see this all the time. We can feel frustrated that people can’t make up their minds. Did I not explain it well enough? Do they need more information?

One of the guests on the podcast note, “Ambivalence should be a flag that something’s going on here, something’s important, and we should slow down and pay attention to that.”

They then go on to reframe this indecision as a good thing, saying that ambivalent decision makers “are really sitting with their options and sitting in that tension. And that for us, felt almost like [it was] a good thing. Look how seriously someone’s taking this decision, right? They really want to make sure they get it right and that it’s a choice they can live with.”

At the end of my story, the daughter did request the “No CPR” order. Her dad died a few days later, peacefully.

_____________________

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

Guest on “Seeing Death Clearly” Podcast

Posted April 15, 2024 by [email protected]

I am the guest this week on the “Seeing Death Clearly” Podcast with host Jill McClennen. We talk about making end-of-life decisions and my Hard Choices for Loving People book.

Here is the link to the podcast on Jill’s website: https://www.endoflifeclarity.com/seeing-death-clearly-podcast

Listen on Apple Podcasts: https://podcasts.apple.com/us/podcast/seeing-death-clearly/id1661355352?i=1000652400832

Listen on Spotify: https://open.spotify.com/show/6BxGAdDYkkfcXKue3RUQca

_____________________

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

Toby Keith Quit Chemo

Posted February 27, 2024 by [email protected]

“I quit chemo…and it probably did more damage to me than the cancer did….” This was Toby Keith’s feelings about chemotherapy, according to his friend Brett Favre.

So, is the takeaway to never do chemo? Absolutely NOT.

Photo by Hiroshi Tsubono on Unsplash

Country singer Toby Keith was diagnosed with stomach cancer in 2021. About six months later, he announced to his fans on social media that he was receiving chemotherapy, radiation, and surgery.

“So far, so good,” Mr. Keith wrote in a June 2022 statement on multiple social media platforms. “I need time to breathe, recover, and relax. I am looking forward to spending this time with my family. But I will see the fans sooner than later. I can’t wait.”

Keith’s last concert in Las Vegas, (TobyKeith.com)

Indeed, he got back out there and played a series of shows in Las Vegas less than two months prior to his death a few weeks ago. In an interview right before he died, he said, “Cancer is a roller coaster. You just sit here and wait on it to go away — it may not ever go away.”

“[Keith] handled it with grace and faith and family and stood up to the cancer as good as you can,” said the former Green Bay Packers quarterback. “[But] I think in the end he was just tired,” Favre added.

We can hardly base treatment decisions on one man’s experience. Mr. Keith, diagnosed at age 60, made his decision based on the type of cancer he had and his own unique goals of care at that stage in the disease.

I am guessing if, during that last phone call, Favre asked, “Do you regret getting the chemo?” Keith might have responded, “Not at all.” Perhaps it bought him some time. Maybe, earlier in the treatment, he did not think it was causing “more damage… than the cancer.”

In my years as a hospice chaplain, I got to see patients after they had stopped treatments that were meant to cure the disease. Heck, you can’t get into hospice unless you stop curative treatments. Many expressed similar sentiments as Toby Keith. In medical-speak, “the burdens outweighed the benefits.” There, perhaps, was a time when the benefits were greater, but no more.

Or, to paraphrase Ecclesiastes in the Hebrew Bible, “There is a time for chemo and a time for no chemo.”

Let go and let be.

_____________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving Peopleand Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Long-distance Caregiving is Difficult: Listen to Podcast

Posted January 22, 2024 by [email protected]

I am the guest this week on “The Clarity Podcast” with Aaron Santmyire. Aaron is a missionary in Africa and started the podcast to help other missionaries with issues related to their work overseas. We talk about the unique difficulties of long-distance caregiving for family members with a serious and terminal illness. We cover the end-of-life decisions I have written about in my book, “Hard Choices for Loving People.”

Here is the link to the podcast:

https://player.captivate.fm/episode/386e2924-4d3a-4759-af07-97c58ebb7461

_____________________

Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving Peopleand Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

A Pacemaker for a 93-Year-Old with Dementia — I Have Some Questions

Posted September 28, 2023 by [email protected]

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.

________________________

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.

Dementia? I’d Rather Not

Posted August 31, 2023 by [email protected]

I often think about spending my last years of life in memory loss.

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.

________________________

Words Matter: “Want” and “Need”

Posted August 3, 2023 by [email protected]

The ethics committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I was just six months into a part-time chaplain’s position for which I had no training. The arc of my career was set for the next forty years in this one assignment.

Four decades later, I am still learning our words matter.

“Need” implies you have no choice

I read a recent JAMA Online article titled “Reconsidering the Language of Serious Illness,” which illustrates that when healthcare professionals use the word “need,” aggressive treatment is often the result. Example statements from the article:

“If her breathing gets any worse, she will need to be intubated.”
“He needs a central line, a special IV catheter in his neck, so we can give him blood pressure medicines.”
“If she doesn’t make any urine soon, she will need dialysis.”
“If she can’t be extubated soon, she will need a trach.”

The article’s authors argue that once you say the word “need,” it implies that the family has no choice but to proceed with the treatment. Who would deny their mother what she NEEDS?

“To need is to lack something essential”

From the article: “To need is to lack something essential. As clinicians, we regularly use the word need to think about and describe the condition of patients with acute serious illness. These patients lack something essential for survival, and clinicians have the technologies and therapies to sustain their lives. So need rolls off our tongues as a shorthand to convey our clinical assessments of patients with acute life-threatening illness.”

Their suggestion for changing the language: “When a patient is facing a life-threatening illness, instead of saying she ‘needs to be intubated,’ we suggest that clinicians say, ‘Her illness is getting worse. I would like to talk with you about what this means and what to do next.’”

This language change opens the conversation up to more options than just “the need to be intubated.” What does the patient think about their current situation? What are her preferences about being kept alive on a machine? What are her chances that she will ever get off the vent? Intubation is one possible choice, but others are equally possible, including shifting the focus from cure to comfort.

Changing “What does the patient WANT?” to “What does the patient THINK…”

Six years ago, I made a significant change in the language in one sentence in my Hard Choices for Loving People book. Once again, a medical journal article convinced me to change a question I had used for almost three decades. I wrote about this in a previous blog, “You Can’t Get What You Want.”

Since the first edition of Hard Choices in 1990, I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. In 2017, I changed it to: “What does the patient think about their current and probable future condition?”

A career using language to help with end-of-life decisions

Soon after I became a part-time nursing home chaplain in 1983, our administration formed an ethics committee. Virginia had just passed a “Natural Death Act,” which gave patients a right in the code to refuse treatment and provided a form (e.g., “living will”) to express their treatment preferences.

The committee included the director of nursing, the medical director, a lawyer, an administrator, and me. In response to the new law, our plan was to inform all patients and their families about advance directives and the option of a “No CPR” order. But who would deliver the information?

The committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I had no healthcare experience and had yet to take basic chaplain training. So, I learned how to talk to patients and families…by talking to patients and families

Over the next year, we went from less than 10% of our patients having an advance directive and/or “No CPR” order to over 80%. And I learned the importance of using my words to help the process along.

We published the first edition of Hard Choices for Loving People seven years later.

[Cover Photo by Kampus Production via Pexels]

________________________

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.

Archive for the ‘Advance Care Planning’ Category

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

“Grandpa, how did you get into hiking and backpacking?”

“Can I do this again?”

A surprise test

Cancer and Things Done and Things Left Undone

Things Left Undone

Things Done

“By what we have done, and by what we have left undone”

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

I have entered the land of cancer patients.

And me?

Grateful indeed!

Ambivalent? Please, Make Up Your Mind! Or Not!

Explaining the need for a “No CPR” order

Surprise indecision

Frustration with ambivalent patients/families among providers

Guest on “Seeing Death Clearly” Podcast

Toby Keith Quit Chemo

Long-distance Caregiving is Difficult: Listen to Podcast

A Pacemaker for a 93-Year-Old with Dementia — I Have Some Questions

Questions:

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

Dementia? I’d Rather Not

What I can control

Keeping my mind active

Even my father’s active mind suffered cognitive decline

My preparing for the worst

Words Matter: “Want” and “Need”

“Need” implies you have no choice

“To need is to lack something essential”

Changing “What does the patient WANT?” to “What does the patient THINK…”

A career using language to help with end-of-life decisions

Volume Discounts for Branded Book Orders

Black

Color

Volume Discounts for Unbranded Book Orders