Compassionate, informed advice about healthcare decision making

Archive for the ‘Withdrawing Life Support’ Category

Is This Suicide?

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“If I do this, will it be considered suicide?” This question was posed to me 34 years ago while I was the chaplain at the Fairfax Nursing Center in the D.C. suburbs of Virginia. It came to mind as I read a recent article in The New York Times.

Source: National Inst. of Health

“Dialysis May Prolong Life for Older Patients. But Not by Much,” by Paula Span unpacks the results of a recent medical research study published in the Annals of Internal Medicine. The researchers compared the length of life and quality of life of two groups of elderly patients with advanced kidney disease. One group started dialysis to manage their disease, and another group declined dialysis.

But the group that declined dialysis didn’t just DO NOTHING. Here’s how the NY Times article put it:

“The alternative to dialysis goes by various names — medical management, conservative kidney managementsupportive kidney care. In this scenario, nephrologists monitor their patients’ health, educating them about behavioral approaches, prescribing anti-nausea drugs like Zofran and diuretics like Lasix to reduce fluid retention, and adjusting their doses as needed.”

I contacted my nephrologist friend, Dr. Alvin Moss, at the West Virginia University School of Medicine. He has long been an advocate for treating kidney failure in elderly patients without resorting to dialysis. He said his patients like to call this approach, “active medical care without dialysis!”

I wrote about this topic in a blog post three years ago. Also, if you want to watch a humorous spin on the very serious subject of the for-profit dialysis business go to Dialysis: Last Week Tonight with John Oliver.

Longer life with worse quality of life

It is true that those on dialysis lived longer, on average, about 25 months, where the group receiving active medical care without dialysis lived about 23 months. But the quality of life for the dialysis patients was worse.

The dialysis group spent about two weeks less at home (in a hospital or nursing home) than those getting supportive care. Almost all the dialysis patients had to travel to a center three times a week to be hooked up to a machine for several hours each visit. Yes, they lived 2 months longer, but with greater burdens.

Photo by Harry cao on Unsplash

Here is one patient’s approach to the dialysis decision from the NY Times article:

“Even before Georgia Outlaw met her new nephrologist, she had made her decision: Although her kidneys were failing, she didn’t want to begin dialysis.

“Ms. Outlaw, 77, a retired social worker and pastor in Williamston, N.C., knew many relatives and friends with advanced kidney disease. She watched them travel to dialysis centers three times a week, month after month, to spend hours having waste and excess fluids flushed from their blood.

“‘They’d come home weak and tired and go to bed,’ she said. ‘It’s a day until they feel back to normal, and then it’s time to go back to dialysis again. I didn’t want that regimen.’

“She told her doctors, ‘I’m not going to spend my days bound to some procedure that’s not going to extend my life or help me in any way.’”

Nursing home patient stopped dialysis

 What happened to the patient worried about suicide?

That patient who asked me about suicide? You guessed it. He was on dialysis and had had enough. He wanted to stop the treatment and die peacefully in the nursing home. He was also a very devout Catholic and wanted assurance that stopping dialysis was not suicide.

“Of course not,” I told him. “You will be dying from kidney failure. It will be a very natural death.” He got that peaceful death he wanted.

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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

Tomatoes, No Free Will, and End-of-Life Decisions

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My wife does not like tomatoes, but I married her anyway. She can’t help herself. I don’t recall that our preference for or against tomatoes came up when we were dating. Does anyone think of such things to ask a potential life partner? I think not.

I recently posted a video of me eating a tomato sandwich, just bread, mayonnaise, and thick, juicy, farm-fresh tomatoes. I closed the reel commenting that there is no free will in whether we like tomatoes, “Perhaps there are more things we think we are making choices about, but we really aren’t.”

NOT ONE of the many comments on the post picked up on the lack of free will. Everyone wanted to talk about their love of tomatoes and all the different ways to eat them. Our love (or dislike) of tomatoes is an easy example of how we lack free will.

A lot goes into acquiring a taste for a food: where you grew up, what your family ate in your childhood, textures you like or dislike, or how a particular food settles in your stomach. You don’t “choose” to like a tomato, you either do or don’t based on many factors outside of your control.

Judgement or pride have no place when you accept that there is no free will in a liking for tomatoes. There is no judgement by us tomato lovers toward those who dislike them. Heck, more are available for me if a certain portion of the population dislikes them. Conversely, there is no sense of pride or achievement by those of us who have attained such a refined palate to appreciate a fine tomato. We are just the lucky ones.

Free will and “choice” in end-of-life decisions

I have made a career of helping patients and families with end-of-life decisions as a healthcare chaplain and author of Hard Choices for Loving People, which has sold over 4 million copies. The first chapter on CPR discusses the “choice” a caregiver may need to make to put a frail or elderly patient through a resuscitation attempt.

I remember the scores of patients and families I helped make end-of-life decisions as a nursing home chaplain. Most often, once I explained that only about 1% of nursing home patients survive the event that led to CPR and survivors are in much worse shape than before, the families would say, “No CPR. Let her go in peace.”

But occasionally, they would say, “Life is precious no matter how poor, and a 1% chance IS a chance. We love grandma and don’t want her to die,” and then the patient remained a full code.

Did these families exercise their free will in making these choices? What if the “choice” was not consciously made by the caregiver but resulted from a series of factors and information leading up to the decision?

Determined: A Science of Life without Free Will

Last year, Robert M. Sapolsky started making the media rounds, including a New York Times interview and a guest appearance on Sam Harris’ Making Sense podcast. He has a new book, Determined: A Science of Life without Free Will. Yes, THAT free will.

Sapolsky presents a credible argument that we are not making “choices” the way we think we are, based on the science of our brains. Here’s an excerpt of his argument:

“Once you work with the notion that every aspect of behavior has deterministic, prior causes, you observe a behavior and can answer why it occurred: because of the action of neurons in this or that part of your brain in the preceding second. And in the seconds to minutes before, those neurons were activated by a thought, a memory, an emotion, or sensory stimuli.…We are nothing more or less than the cumulative biological and environmental luck, over which we had no control, that has brought us to any moment.”*(see his full 4-paragraph summary below)

What about that family who “chose” a full code for their frail, failing, nursing home patient? Maybe they watched Rescue 911 on TV, where 100% of patients getting CPR survived (see my previous blog about CPR on TV). Perhaps this previous exposure to all of the CPR successes on TV makes them say, “Yes, do everything,” without even thinking about it.

Why present a choice if there is no free will?

So why would I take the time to explain CPR and present a “choice” to use it or not, if there is no free will to make that choice? Maybe they did not know about the 1% survival rate. This new information might connect to millions of bits of data previously registered in the family’s brains, activating an assessment that Grandma would likely not survive.

I’d also have these conversations because I can’t help myself. I am compelled by forces within my brain, formed over years of experience, for which I have no control: Talking about end-of-life decisions was part of my job, family values instilled in me from my youth was to do your duty on the job, the long line of nurses in my family fostered a natural compassion for these patients and families.

I believe the scientific evidence Sapolsky presents that we have no free will is quite compelling. Most people may disagree, citing religious and spiritual arguments over whether or not we have free will.

Humor me on this one. If there is no free will, we must be less judgmental of those who “choose” a path we feel is wrong. If they’re basing that decision on information spanning generations, they couldn’t help themselves. Conversely, I can’t take credit if my actions led to more compassionate end-of-life care for a patient. I had nothing to do with all that went into their family’s “choices.”

In this brief blog, I cannot begin to cover what it took Sapolsky over 500 pages to say, but I added a larger excerpt of his book below.

Now I’ve got to go back to the farmer’s market because I am out of tomatoes. I can’t help myself.

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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

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*Below is the summary of the basic thesis by Robert M. Sapolsky in his book, Determined: A Science of Life without Free Will, pages 3-4

“Once you work with the notion that every aspect of behavior has deterministic, prior causes, you observe a behavior and can answer why it occurred: as just noted, because of the action of neurons in this or that part of your brain in the preceding second. And in the seconds to minutes before, those neurons were activated by a thought, a memory, an emotion, or sensory stimuli. And in the hours to days before that behavior occurred, the hormones in your circulation shaped those thoughts, memories, and emotions and altered how sensitive your brain was to particular environmental stimuli. And in the preceding months to years, experience and environment changed how those neurons function, causing some to sprout new connections and become more excitable, and causing the opposite in others.

“And from there, we hurtle back decades in identifying antecedent causes. Explaining why that behavior occurred requires recognizing how during your adolescence a key brain region was still being constructed, shaped by socialization and acculturation. Further back, there’s childhood experience shaping the construction of your brain, with the same then applying to your fetal environment. Moving further back, we have to factor in the genes you inherited and their effects on behavior.

“But we’re not done yet. That’s because everything in your childhood, starting with how you were mothered within minutes of birth, was influenced by culture, which means as well by the centuries of ecological factors that influenced what kind of culture your ancestors invented, and by the evolutionary pressures that molded the species you belong to. Why did that behavior occur? Because of biological and environmental interactions, all the way down?

“As a central point of this book, those are all variables that you had little or no control over. You cannot decide all the sensory stimuli in your environment, your hormone levels this morning, whether something traumatic happened to you in the past, the socioeconomic status of your parents, your fetal environment, your genes, whether your ancestors were farmers or herders. Let me state this most broadly, probably at this point too broadly for most readers: we are nothing more or less than the cumulative biological and environmental luck, over which we had no control, that has brought us to any moment.”

Toby Keith Quit Chemo

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“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.

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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

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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

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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

Dementia? I’d Rather Not

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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.

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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.

Words Matter: “Want” and “Need”

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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]

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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.

“He coded, but God brought him back to us!”

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Can we “know” what God wants?

His last days were filled with great suffering, played out publicly on social media and in the national news from March until his death on May 19th. Here are the descriptions of the patient’s condition in the last weeks of life:

  • April 26th, GoFundMe post: “He has now lost 80 pounds and subsequently continues to struggle with extreme weakness.He’s on strong IV antibiotics three times a day.… He has intermittently also suffered [from] kidney issues and [has] been on dialysis. In addition to this, he is having heart and lung concerns, sores from being in bed for 4 months and depression.”
  • April 30th, Facebook post: “He was admitted to the hospital tonight with acute kidney failure and dehydration.”
  • May 9th, Facebook post: “He will be having emergency surgery tomorrow. Still in ICU fighting the infection and organ failure.”

Later, his wife refused to withdraw life support, claiming on Facebook, “He’s a fighter, and his will is strong even if his body isn’t. God is our hope.”

What does God want in a VERY serious illness?

Can we know what God wants? I was drawn to this story reading the pleas for people of faith to pray for a miracle when one could read between the lines and understand that this man was dying.

Let me be clear: If I were the chaplain in this story, I would approach this patient and his family compassionately and without judgment. As their chaplain, my role would be to meet this family where they are, not where I want them to be.

But I was not their chaplain and now have the luxury of pondering this situation from afar after it ended.

Is God ONLY for saving a life?

I find many things curious about the language and theology expressed publicly.

  • Let’s start with an earlier GoFundMe post from March: “He coded, but God decided that it was not his time to go and brought him back to us.” Evidently, the patient’s heart failed, yet he continued to live after the intervention of CPR.

The family saw this as a sign of God’s intervention. The skeptic might say, “God did not decide the patient should not die during that code. Human intervention went against what seemed to be God’s plan.”

Who am I to say God did or did not intervene? I stopped speaking for God years ago.

I believe it is a slippery slope to claim that God is saving the life of someone in multiple system failure when the death expectancy rate for all of us is 100%.

Perhaps “God called him home?” Acceptance or crisis of faith?

There is another way people of faith might approach such circumstances. Other families I have ministered to chose to forgo heroic medical interventions. When the patient died, they said, “God called them home.”

I am guessing that this patient’s wife probably accepted “God’s timing” when her husband finally died. I hope that is true. People who feel God is in control of everything can often shift to acceptance when death eventually occurs.

But for some who expect a miracle, death can cause a crisis of faith. I wrote about this in a previous blog, “God has a lot of explaining to do.”

What is keeping this patient alive? The machines or God?

  • May 7th, Update! “The doctors are continuing to try and prepare me for the worst. And I continue to explain to them that [we] are people of faith and that our God has the final say. I am not in denial about what’s happening to him or blind to what the medical reports say…. I just know that the God I serve is greater than any infection and more powerful than any organ failure.”

There would have been a time long ago when death was not optional. Antibiotics and other medical interventions can now cure many who would have died in another time and place.

These same modern medical treatments can also prolong the dying process, sometimes at the cost of great pain and suffering for the patient.

Other hopes besides “not dying”

I try to help families see that there are other outcomes to hope for other than “not dying.” Having a peaceful death, being pain-free, or spending quality time with family. This is what I did with the man who told me, “God has told me my wife is not going to die.”

I don’t know how the end came for this man. I only saw the announcement of his death and an obituary in the New York Times, after which the Facebook and GoFundMe pages went silent.

Hopefully, all involved, living and dead, are now at peace.

[Cover photo by Richard Catabay on Unsplash]

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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.

How Come so Much Aggressive End-of-Life Care?

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Photo by Vidal Balielo Jr. via Pexels.com

The man was riddled with cancer. The paramedics continued CPR as they wheeled him out of his nursing home room. I drove his wife to the emergency room. This is what the family wanted, although I am not sure the patient would have chosen it. When the doc came to the waiting room to tell the family he died, they congratulated themselves on “trying everything.”

Sadly, aggressive care in the last days of life is all too common. Perhaps, my experience with this patient was an extreme example. Aggressive care can include an ICU stay, surgery, chemotherapy or radiotherapy. New research shows that about 60% of elderly Americans with metastatic cancer receive some sort of aggressive care in the last 30 days of life.

60% of elderly, advanced cancer patients receive aggressive life-saving attempts in the last month of life

Photo by Matej via Pexels.com

This research was recently published in JAMA Network Open and looked at the last 30 days in the lives of 146,329 people who were over 65 and had a diagnosis of metastatic cancer, in other words, very sick, frail elderly folks with an average age of 78.2 years.

I was put onto this research by a great article from Paula Span in the New York Times. She writes a regular piece called, “The New Old Age,” and this was one in her series. What is not clear from the research is “Why?” Why are so many, obviously dying old folks being dragged through more treatments which are normally reserved for those seeking cure?

Some may want this treatment, but I doubt it

Photo by Kampus Production via Pexels.com

It is true that some of these aggressive treatments can be considered palliative, for example, radiation to reduce the size of a tumor and hopefully reduce pain. It is also true, that some of this aggressive treatment is actually what the patient wanted. Perhaps, they were made fully aware of their grave condition but chose treatment that had little chance of helping them. Both of these possibilities are probably in a small minority of this aggressive care.

Spirituality raises its head again

The JAMA study concluded, “The reasons for aggressive end-of-life care are multifactorial, including family involvement, religion and spirituality, patient preferences, patient-clinician communication, and health care delivery systems.” I would add, the default mode in our healthcare system is to do stuff, when faced with a problem. That “stuff” is usually doing more of the same rather than shifting to comfort care only.

My chaplain antennae always perk up when I see “religion and spirituality” mentioned in any medical journal article. I am back to my oft-repeated premise — for patients and families, end-of-life decisions are primarily emotional and spiritual. People need to learn when it is time to let go and just let things be.

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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.

VSED by Advance Directive — An Alternative to Prolonged Dying

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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.

Being Sued for SAVING the Life of a Patient

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“I’ll drag mother down to my car and take her to the emergency room myself,” she told me.

The patient had left verbal and written instructions that she did not want to have life-saving treatments when she was dying. A “No CPR” order was on her chart. Knowing her daughter’s feelings, the old lady chose her son as her power of attorney. She conspicuously omitted any mention of her daughter in the document.

I met this patient, her son, and daughter while I was a nursing home chaplain. By that time, the patient had severe dementia, so healthcare decisions were in the hands of the son. The daughter commented about taking her mom to the emergency room in one of our earlier conversations.

A recent issue of Hospice News featured a story about how healthcare institutions are open to lawsuits if they do not honor a patient’s wishes to refuse life-sustaining treatment. We almost always think it is the right thing to save a life. But there are cases of “wrongful life.” That is, saving a patient’s life who had chosen to let a natural death happen.

As it typically happens, the nursing home patient I ministered to went into a slow downward decline. Even the daughter eventually realized that when her mother’s heart finally stopped, it was time. Thankfully, there was no schlepping the poor old lady into the car.

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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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