Compassionate, informed advice about healthcare decision making

Archive for the ‘Death & Dying’ Category

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

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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.

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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

Guest on “Seeing Death Clearly” Podcast

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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

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

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

The “Comfort” of Nothingness

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“When I’m dead, I’m dead.… and I just sail off into nothingness, and that brings me a lot of comfort. That doesn’t bring everyone comfort but it brings me comfort.”  —Caitlin Doughty, author of Smoke Get in Your Eyes, from an interview on the documentary “Into The Night: Portraits of Life and Death.”

Some people are okay with death being the end.

Their dead father sent a snowstorm

I haven’t run into too many people like that because I have spent so much of my life around folks who believe just the opposite. Many, if not most people, both religious and nonreligious, have some sense that their lives will continue in some form after death. I even had one family insist their dead father sent a snowstorm.

Photo by Ethan Hu on Unsplash

This family had asked me to conduct the funeral service for this man who was one of our hospice patients. I had never met the man nor his family before, since they all claimed they were not religious and did not want a visit from the chaplain. So, he dies and they have no relationship with any church but needed someone to lead the service. Happens a lot in hospice. I was glad to help out.

Through a phone conversation with family members I planned the service which was to take place at the funeral home. They described the recently departed man as very shy and private. He was also a giving and generous man who loved his family dearly.

The night before the scheduled service we had a major snowstorm. I felt I could make it to the funeral home, as did the family, so the service was held as planned. No burial was needed since the man had been cremated.

Only one person showed up for the service besides the few family members.

This lack of turnout did not bother the family in the least. They said, “It’s just like Dad. He was so private that he sent a snowstorm to keep people away.”

“Okay,” I thought.

What do I know? Maybe the recently departed do have the power to send snowstorms. My point is that the belief in living beyond the grave is pervasive whether or not it has a religious aspect to it.

Yet, in my years at the bedsides of the dying and their families, I have gathered enough evidence that some people can be okay with the idea that the last breath is the end. I have seen scores of people face their deaths peacefully even while they have no belief that they are “going to a better place” or are going to be reunited with departed family members.

Many people agree with Caitlin Doughty that death is the end. But, I did find her use of the word “comfort” something I have not heard a lot from those who accept that there is nothingness after death.

I do hear “comfort” from those expecting to see deceased relatives or to be in the presence of God. I can’t tell you the number of times I sat with a family around the bed of a dying relative and someone says, “I don’t know how people do this without faith in God?” Caitlin seems to have an answer to that question.

How is the thought of nothingness “comforting”?

Another way of asking that question is, “How is the thought of nothingness ‘comforting’?”

Photo by Ankit Sood on Unsplash

We know humans, at some point, became conscious beings in our prehistoric past. A major hint of this emerging consciousness is the fact that we buried our dead with tools and other items to help the departed in the next life. This becomes a sign of consciousness because we know our ancient ancestors had the brain capacity to understand that they were going to die and they had figured out a way to deal with it.

Religions grew and flourished as they offered an answer to the mystery of death. What happens to us when we die? The religious answers of life after death do offer many people great comfort.

Let me suggest a two ways that, perhaps, the thought of nothingness is comforting:

  1. For Caitlin Doughty to say that knowing there is nothing after death, “brings me a lot of comfort,” first shows that she, too, has found an answer to this mystery of death and its meaning. There is comfort in settling the question in one’s own mind and heart. Mystery solved. Of course, it is different than a more traditional religious answer but having the question settled is comforting nonetheless.
  2. The second way nothingness after death is comforting grows out of that first reason. If there is nothing after death, that means this life is all there is. And if this is all there is then that makes this life all the more meaningful. This is it. This is not preparation for another life. Therefore, we must live this life abundantly. Enjoy it to the fullest and help our fellow humans by relieving their suffering and contributing to their joy. After all, this is all there is, they say. The incredible wonder and joy of living this one life brings the comfort.

 

As Doughty points out, “That doesn’t bring everyone comfort but it brings me comfort.” I have to take her at her word.

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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.

Photo by Greg Rakozy on Unsplash

A Cave, A Deathbed, and “How You Made Them Feel”

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“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” —Maya Angelou

1975 – Vineville Baptist, Macon, GA, youth group on retreat at Toccoa, GA. Photo by Hank Dunn

My theory about what matters most in the ministry is based directly on Angelou’s quote: It wasn’t so much what I said or did during my 50 years in the ministry. It was more about that certain “something” that made the people I worked with feel a particular way.

I was a youth minister for the first five years after seminary. I loved the work and loved “my kids.” We keep in touch in a Facebook group. I asked the group about our ministry and the Angelou quote.

Interestingly, a few noted specific things I said or some teaching from the books we read. Okay, so maybe people DO remember the things you say. One fellow, who eventually became a teacher and hospice chaplain, commented, “I don’t see it as an either/or but a combination.”

1977 – High school student on a backpacking trip into the Shining Rock Wilderness, NC. Photo by Hank Dunn

Others confirmed my theory that how people felt was most important. Another one of my kids (who also went into the ministry and travels the world training substance abuse counselors) commented:

“Absolutely. Experiences of pleasure, pain, joy, and shame have the biggest impact on the wiring of our brains and, therefore, how our souls interpret and interact with the world. Hank, you created a safe space where we could experience the joy of God and His love for us in nature, community, and individually.”

Sitting alone in a dark cave

I would sometimes take the teenagers into the wilderness as a place of ministry. We rafted on the Chattooga River, where the movie Deliverance was shot. We backpacked all over the north Georgia and western North Carolina mountains. We paddled and camped for three days in the Okefenokee Swamp. And, my favorite, we explored caves.

Part of every caving experience always included time for silent introspection. I would separate the kids along a passageway, take their lights, and have them sit alone in the darkness for 30 minutes. Recently, a participant on one of those trips shared with me the journal he kept at the time. The now-retired pharmacist wrote in 1975:

“I was really nervous before entering the cave. I never really liked the idea from the start. But when all lights were put out, I felt one of the greatest feelings of inner peacefulness and calm.”

1977 – “The Squeeze” in Johnson Crook Cave, AL. Photo by Hank Dunn

Here’s part of a report I wrote about another caving trip with junior high kids, also in 1975:

“There was one girl who was very much afraid to sit alone. I sat her down at the end of the line, where I would be close to her. After approximately five minutes in the dark, she began crying and eventually called me. I went to her, comforted her, told her I was near, and asked her to continue to sit, think, and pray as she remained in her place. She calmed down and completed the half-hour in darkness. She later revealed that it was not so much that she was afraid of the darkness but afraid to face up some of the own things in her life.”

“…people will never forget how you made them feel.”

A deathbed and the gift of presence

1990 – Fairfax Nursing Center. Photo by Hank Dunn

Fast forward 25 years, when I was a hospice chaplain. I was called to the home of a woman dying of cancer. I had made several attempts to schedule a time to see her and her family, but they were always busy and put off letting me in. Now, she was in her last hours. It was time to let the chaplain in.

When I arrived, a family friend sat with me in the living room and explained what was happening. We then went into the bedroom where the woman lay dying. Her husband sat beside her, and a nurse was not far away. I said very few words. There was little to say. I asked the husband if I could offer a prayer. He said, “Please do.” I finished my prayer, and he asked, “Can we say the Lord’s Prayer?” “Of course,” I replied, and we all prayed.

I left the bedside, and the friend followed me to the living room. I stopped to say goodbye, and this woman threw her arms around me, hugged my neck, and said, “You are so wonderful. That is just what we needed.” My first thought was, “Boy, is this job easy.” Anyone who could recite the Lord’s Prayer could have done what I did in that room. But then, I was so grateful to be invited into this moment in this family’s life.

I think Maya Angelou and I are on to something. People always remember how you made them feel.

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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.

Lessons from Jimmy Carter’s Six Months in Hospice

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Former President Jimmy Carter continues to teach us how to age with grace and meaning. I blogged previously about his going on hospice back in February. Now, six months later, he is still alive and receiving hospice care at home.

Three lessons we can take away from this phase in his life:

  1. Hospice care can continue longer than six months

To qualify for hospice under the Medicare benefit, a physician has to say, “This patient has, at most, six months to live if the disease runs its normal course.” What happens if the prognosis is wrong and the patient is still alive after six months?

Note the caveat, “if the disease runs its normal course.” Some patients do live longer than is expected. In these cases, the hospice can re-certify that the patient still appears to have six months or less to live.

Some diagnoses are very difficult to guestimate the number of months a patient may have left. For instance, cancers are easier to give a prognosis than dementias. Doctors just do the best they can.

50% of hospice patients are on hospice care for 18 days or less.* 25% receive care for just five days or less. But there are outliers on the long end, with 10% on service for more than nine months. So, Jimmy Carter’s six months does happen more often than you might think.

  1. Hospice care is primarily delivered in the place of residence

Carter home in Plains, Georgia. Photo: Library of Congress

Many people think hospice is a place you go to die. Not true. Hospice is a concept of care. 98% of hospice care is delivered in the patient’s residence, whether that is a private home, an assisted living facility, or a nursing home.

A recent Washington Post article gave a window into life in the Carter home now.

“Jimmy Carter is often out of bed first, waiting in his recliner for his wife to emerge. ‘Rosalynn comes in the room and makes a beeline for this chair and bends over and kisses him,’ said Jill Stuckey, a close friend. They spend many hours sitting side by side.”

  1. Families usually provide most of the caregiving for hospice patients

Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

Many families are surprised that hospice does NOT routinely provide round-the-clock care. The family must provide the bulk of the care. Only 1% of hospice dollars go to what is known as “continuous care,” meaning round-the-clock.

Of course, the Carters have the resources to get the best care at home. They have other perks too. The Secret Service gave the couple a ride to watch the Fourth of July fireworks in their hometown.

Interestingly, Rosalyn Carter has had a passion for providing support for family caregivers. When The Carter Center announced that Mrs. Carter was diagnosed with dementia, they commented, “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Thank you for your service

The Post asked people who knew them what makes the Carters keep going. “Gerald Rafshoon, who was Carter’s White House spokesman, and others believe a key reason the Carters keep going is that neither wants to leave the other.”

The Carters have lived a life of service and continue to provide an example of how to approach the last days. Thank you, Jimmy and Rosalyn!

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

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

A Death Expert on His Own Deathbed: “Joy and Hope and Trust”

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Two months after he died, Ernest Becker won the 1974 Pulitzer Prize for General Nonfiction for his book The Denial of Death. I guess, since he was dead, he was not a winner, but his book was.

I’ve been thinking lately about Becker and his book and the profound influence they both have had on my life. I referenced his thoughts in a previous blog titled, “Our Struggle with Dying Starts When We’re Toddlers.

Best-selling author, Mark Manson* includes The Denial of Death as one of “7 Books That Will Change How You See the World.” In Manson’s playful way he writes:

If This Book Could Be Summarized in An Image, That Image Would Be: The grim reaper silently laughing to himself watching you build an elaborate Lego set called “Life,” and you turning around and saying, “Stop laughing, this is important!”

The Denial of Death 

I’ll get to Becker’s deathbed below but first a few quotes from his classic. Note that Becker wrote in 1973 just as we were becoming aware that we no longer refer to all humans as “man.” I know better now but I will let his original words stand.

  • “The main thesis of this book is…: the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity—activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.” (p. ix)
  • “The irony of man’s condition is that the deepest need is to be free of the anxiety of death and annihilation; but it is life itself which awakens it, and so we must shrink from being fully alive. (p. 66)
  • “In the prison of one’s character one can pretend and feel that he is somebody, that the world is manageable.” (p. 87)
  • “Modern man is drinking and drugging himself out of awareness, or he spends his time shopping, which is the same thing.” (p. 284)

You may argue, “I DON’T spend any of my time thinking about my certain death.” I think Becker would say, “You just proved my point.”

 Psychology Today and the deathbed conversation

Soon after The Denial of Death arrived in late 1973, Sam Keen, one of the editors at the prestigious Psychology Today magazine, called Becker’s home hoping to set up an interview. Keen explained how the deathbed interview came about: “I called his home in Vancouver to see if he would be willing to tape a conversation. His wife Marie informed me that he had just been taken to the hospital and was in the terminal stage of cancer. The next day she called to say that Ernest would very much like to do the conversation if I could get there while he still had strength and clarity. So I went to Vancouver with speed and trembling, knowing that the only thing more presumptuous than intruding into the private world of the dying would be to refuse the invitation.”

Here are a few quotes from THE expert on death as he lay dying:

  • “Each of us constructs a personality, a style of life or, as Reich said, a character armor in a vain effort to deny the fundamental fact of our animality. We don’t want to admit that we stand alone.
  • “We do anything to keep ourselves from the knowledge that there is nothing we can do.… Well, this is the control aspect of character armor which is so vital to the human being.”
  • “Joy and hope and trust are things one achieves after one has been through the forlornness.”

Keen noticed that Becker kept referring to “God” when divine transcendence had not previously been part of Becker’s writings. The dying man responded:

  • “I don’t feel more religious because I am dying. I would want to insist that my wakening to the divine had to do with the loss of character armor.
  • “At the very highest point of faith there is joy because one understands that it is God’s world, and since everything is in His hands what right have we to be sad—the sin of sadness. But it is very hard to live that.”

Ernest Becker died in March 1974 at age 49. Two months later his book was awarded the Pulitzer Prize.

*Manson is author of The Subtle Art of Not Giving a F*ck, over 8 million books sold.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

The First Stage is “Denial”

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“Denial is a protective device, a shock absorber for the soul. It prevents us from acknowledging reality until we feel prepared to cope with that particular reality.…  We do not let go of our need to deny by beating ourselves into acceptance; we let go of our need to deny by allowing ourselves to become safe and strong enough to cope with the truth.”  Melody Beattie, The Language of Letting Go

“Denial is a sacred place. Denial allows us to stay in control. It is a ledge we sit on above a cliff. Sometimes we need to stay there a little longer.” Chaplain Rev. John, quoted in “Finding Faith Through Listening,” by Andrea L. Merrill, MD, JAMA Online, July 13, 2023

Denial can cut off meaningful conversations

We were told to take off our hospice name tags before entering the home because the wife didn’t want her husband to know he was dying. On my one and only visit into the home, the man appeared yellow because of the progression of liver cancer. Even his eyes were yellow, and it turned out he was within days of dying.

When I first walked into the home, I sat alone with the wife in the living room. She was very comfortable talking about her husband’s impending death. I asked her, “What is all this about not wearing our pins or talking about death? Does your husband know he is dying?” She said, “Oh, yes, he knows he is dying.” I asked, “How do you know he knows?” She responded, “Because he asked me.” I asked how she responded to him and she had told him, “Not while I’m around.”

I suggested, “What if you had said, ‘Yes, you are dying and I’m going to miss you. We have had a wonderful marriage and I love you.’” She said, “I couldn’t do that. That would be too painful.”

Living in the shadow of a life-threatening illness is difficult. Worse yet, when it becomes clear that there is going to be no recovery, we naturally resist any thought of what really lies ahead. Understandably, this wife wanted to avoid such a painful discussion. That is why we have such a strong urge to deny the reality of the incurable nature of the disease. We want to avoid the emotional pain of saying good-bye. The man died while his wife was at the grocery store—remember she said, “Not while I’m around.”

Denial is normal

Photo by Ben White on Unsplash

Denying the reality of the terminal phase of a disease is normal, expected, and perhaps even necessary. It gets us through the initial shock of such a fate. Acknowledging the truth may cause anger and depression, which are, again, normal responses.

The father of a twenty-nine-year-old son who died of leukemia told me, “I lived in denial of the certainty of my son’s death to the very end. I was completely surprised when he died. I feel so guilty about that denial.” I thought guilt was a strange feeling for such a natural response as denial, so I asked him about that. He said, “I felt guilty because if I had accepted that he was dying, there were so many other things I would have said to him, but I lost that opportunity.”

[This blog post was adapted from my Light in the Shadows: Meditations While Living with a Life-Threating Illness.]

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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.

25 Years for This?

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[Note: I wrote this 25 years ago, reprinted here.]

June 3, 1998

This morning was little different at the office than other mornings. I am on the West Team of the Loudoun Region of the Hospice of Northern Virginia. The West Team occupies one room on the second floor of a two-story townhouse office in Leesburg.

Hank at Grief Camp for Children, 1998

Now, get this picture. On the West Team are five nurses, three social workers and one chaplain. In our room are six desks and five phones. No desks are assigned. First-come, first-served. We do not spend a lot of time in the office because we mainly are on the road visiting patients. Yet, most of us start our day there. Can you see where this is going?

I got there a little late today and I was lucky. I got a desk but, alas, it was the one without the phone. It does have a view — into the back yards of townhouses. I am close to my colleagues — Kelly was about two feet to my left and Pam equidistant to my right.

We all talked about Nelia, who had to pull her hair back because she was going to see Sara who didn’t like Nelia’s hair falling in her face as she cared for Sara. We are part of each other’s conversations, each other’s space, each other’s work lives.

Ordained June 3, 1973

Hank’s ordination Bible, 1973

It struck me this morning, and I announced to my friends at work, I was ordained to the gospel ministry twenty-five years ago today. It took place at the St. Matthews Baptist Church in Louisville, Kentucky on the same weekend as my graduation from seminary. The pastor who led the service left Louisville to pastor the largest church in North Carolina. He called me a year later and asked if I would come to be his youth minister. I didn’t. He eventually left the ministry. Something about an affair. Last I heard he was selling cars.

And me? After twenty-five years in the ministry? I have made it all the way to — sharing phones, sharing desks, views of townhouse backyards and having to turn in a time sheet every day with my documentation or I don’t get paid.

“Success” in the ministry

Hank (right) with seminary friends. In this photo are two future seminary presidents, one future pastor and one future hospice chaplain.

This is unlike one of my best friends during seminary days who went on to get a Ph.D. from Cambridge and is now president of the largest seminary in the world. Others from our class pastor big churches. I report to the senior social worker who reports to a vice president who reports to a president who reports to a board of directors. I am pretty far down on the food chain.

Here I am, a fifty-year-old, making less than many new college graduates earn. I have come all this way in the ministry, following my call only to find myself doing what any seminary student could do. I don’t know. I’m not feeling sorry for myself. I was just struck with the irony of the celebration of the 25th anniversary of my ordination and having to borrow a phone to make a call.

I think probably my classmates and I all imagined as we left seminary that in twenty-five years, we would have a private office with a secretary or at least a phone. That’s how we keep score in our society — how much money I make; how much of the trappings of success do I have, like a beautiful office; how many employees I supervise; or, what kind of car I drive.

Less is more

But, you know — this lack of having an office is so much better. I have had to narrow my essential papers down to two notebooks that I can carry anywhere. If I had an office, I would have piles of clutter everywhere. And not having an office says to me my work is not at a desk anyway — it is with the people — and sick and dying people at that.

I think I remember something Jesus said about foxes having holes, yet the Son of Man has nowhere to lay his head. I guess Jesus didn’t have an office either.

Hank

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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.

Finding Meaning in Suffering is Difficult — But Can be Done

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Why do terminally ill patients choose to end their lives early?

As I have done for the last 25 years, I quickly opened the most recent annual “Oregon Death with Dignity Act: 2022 Data Summary.” Yes, it has been 25 years since Oregon made “medical aid in dying” (MAID) legal. At the time, this was often referred to as “physician assisted suicide” (PAS). In Oregon, and other jurisdictions, a physician can prescribe a lethal medication for terminally ill patients who request it and who appear to be within six months of dying. There are safeguards to assure patient safety and to address other concerns.

For 25 years this list has been part of my lectures

My interest, each year, is drawn to the list of “End-of-life concerns.” I added this list to my lectures and writings as I went about the country speaking on making end-of-life decisions. These responses are the answers to the question, “Why did the patient want MAID?”

Photo by Claudia Wolff on Unsplash

Of the seven “concerns” listed, “Losing autonomy” is mentioned by 90.3% and “Less able to engage in activities making life enjoyable” is second at 90.0%. Next to last is “Inadequate pain control, or concern about it” (28%). You would think that pain would be one of the main reasons people want to end their lives sooner — to avoid pain. (See below for the whole list.)

The piece that has made it into my lectures and writings is the concern about “losing autonomy.” Understandably, people want to be in control. I am all in for controlling the things that can be controlled like physical pain. We often think about “pain and suffering” as two related issues as in, “Pain is inevitable, suffering is optional.” Suffering is the emotional and spiritual struggle that can accompany pain.

Seeking autonomy and avoiding suffering

At the risk of over simplifying, these patients are choosing an early exit to avoid suffering. Their greatest fear is losing the ability to make autonomous choices. I honestly do not know what I will do when I face my last days, so I have no judgement of these patients who hasten their deaths.

I have never lived in nor worked in a jurisdiction that allows for MAID. A few times, I ministered to a patient who was considering suicide. We asked, “What is it that makes you want to end your life?” We found that once we addressed their concern, be it pain or care of the family, the patient no longer wanted an early exit.

I write this on Good Friday, as Christians remember the sufferings of Jesus. Over the centuries Christians have found meaning in His death. Reducing pain and suffering in dying patients can be pursued while, at the same time, looking for ways to find meaning in the midst of suffering.

Here are some quotes I have gathered to share with you to make sense of suffering, and hopefully prepare both you and me for own future suffering.

  • “Suffering is the state of severe distress associated with events that threaten the intactness of person.” Eric Cassell, MD. The Nature of Suffering and the Goals of Medicine
  • “If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.… Suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” Viktor E. Frankl (1905-1997) Holocaust survivor and author of Man’s Search for Meaning
  • “Our avoidance instinct is also due to the fact that our culture has decided that suffering has no value.” Frank Ostaseski, Buddhist teacher and founder of the Zen Hospice Project
  • “You must remember that no one lives a life free from pain and suffering.” Sophocles (497-406 BCE)
  • “Whoever got this idea that we could have pleasure without pain? It’s promoted rather widely in this world, and we buy it.” Pema Chödrön, Tibetan-Buddhist teacher and author.
  • Flannery O’Connor

    “I have never been anywhere but sick. In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company; where nobody can follow. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.” Flannery O’Connor (1925-1964) died after living 13 years with Lupus.

  • “The idol of control holds out to us the hope that suffering and death can be eliminated. If we just get smart enough, we will gain control of pain and even of death. That false hope, in turn, has the effect of setting suffering up as an enemy to be avoided at all costs. We can choose never to suffer!” Elaine M. Prevallet, S.L., Benedictine Nun
  • “Terry, dying doesn’t cause suffering. Resistance to dying causes suffering.”  Terry Tempest Williams quoting her dying mother in the book Refuge.

_________________________

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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End-of-life concerns                                                                                 Number (%)

  • Losing autonomy                                                                     2,216 (90.3)
  • Less able to engage in activities making life enjoyable    2,208 (90.0)
  • Loss of dignity                                                                           1,666 (71.7)
  • Burden on family, friends/caregivers                                   1,179 (48.0)
  • Losing control of bodily functions                                         1,077 (43.9)
  • Inadequate pain control, or concern about it                         686 (28.0)
  • Financial implications of treatment                                           125 (5.1)
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