Comfort Care | Hank Dunn

Compassionate, informed advice about healthcare decision making

Archive for the ‘Comfort Care’ Category

Ending Cancer Screenings at MY Age

Posted March 10, 2022 by [email protected]

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

Photo by Hush Naidoo Jade Photography on Unsplash

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

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

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

My greatest fear is dementia

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

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

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

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

In my case, let the cancer grow

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

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

Charlie and His Last Days in Hospice

Posted January 17, 2022 by [email protected]

Katie meets Charlie on her 9th birthday

Charlie was born on October 4, 2007. The Feast of St. Francis. A bookend.

He recently came to his last days, loved, and surrounded by family. We didn’t use the word at the time, but he had a “hospice death.” My heart is so grateful.

Charlie grew with our family. He was a Cavalier King Charles Spaniel, a gift to our daughter, Katie, for her ninth birthday. Good friends raved about their Cavalier and their breeder. We didn’t know what it took to own and raise a dog, and we were sucked in. It sounded so fun.

The breeder required that the adopting family have someone at home during the day. After making a “social work” home visit, she approved us. Of course, she received a hefty fee, which we gladly paid.

Charlie took to sleeping with humans

“Charlie” was not a very creative name, but it just seemed to fit a male King Charles Spaniel. At first, we crated him at night. After weeks of barking, he finally settled into his crate and his place at home. Until…

Our good friend, Roxanne, took Charlie in while we traveled. In her house, dogs slept with humans. Charlie would never again spend the night in a crate.

There is something very endearing about sleeping with a dog. Charlie would push up against my body or between my wife and me. He would snore and shift his position in the night.

Charlie joined Katie in Oxford her second year at Ole Miss, where he supported her during roommate issues and dating cycles. Their deep bond reached new depths. A dog just loves unconditionally.

In a freak accident, Charlie broke his hip and required surgery. Katie and Charlie made it through those days together, and forever one of his hind legs stuck out to the side. It was quite loveable to see when he sat on his haunches, one leg akimbo.

Charlie goes to Washington

High five on Katie’s graduation from college

After graduation, Katie moved to Arlington, Virginia, with Charlie and eventually took a job on Capitol Hill. Long days, especially when the Senate was in session, made keeping Charlie with her impossible. I picked him up last September, and we drove the 900 miles back to Oxford. He was the best road trip buddy. I will miss that.

Like I heard from so many of my hospice families, there were many signs that the end was approaching, but we didn’t think of it until after he died. Arthritis was setting in, and we gave him a daily pain pill. We noticed that he had become deaf. No more did he cock his head to the side when we spoke to him. (The way he used to do that was the best.)

Charlie made one last kayak trip to the swamp

Charlie’s last wilderness trip

I made one last kayak trip with Charlie in October. I featured him in my “Hank’s Deep Thoughts” video filmed that day. It was about how dogs practice mindfulness naturally when humans have to work at it. Charlie has hiked and camped and canoed and road tripped. This crisp October morning was his last wilderness outing.

The first of November, he had some serious intestinal issues, and we took him to the vet. With a change in diet and some meds, he stopped going outside hourly all night long. We thought we had settled into a “new normal.” But we were settling into his last days.

Katie was home for Thanksgiving, and all seemed normal. On Tuesday, November 30, it all changed. His eating and drinking fell off. He stopped walking. For days, I held him up as he took a few bites of food or sips of water. His legs would not support him to poop or pee. We knew this was the end.

A mother’s intuition brought Katie home for one last visit

On Sunday afternoon, my wife and I were pulling into the Walmart parking lot, and she blurted out, “Katie has to come home tonight.” It was a mother’s flash of insight for her soon-to-be grieving daughter. She called Katie and told her to get to National airport and get on a plane. I picked her up in Memphis with Charlie a few hours later. They slept together on our bedroom floor that night before she returned to D.C., Monday. In the car on the way to the Memphis airport, she “Snapped” a photo to friends, “my last photo I’ll ever take with my baby.” Indeed, it was.

Three days before dying a comfortable death at home

We kept Charlie comfortable. He neither ate nor drank all day. He could not stand. We called the vet, but he was out of town. It was just as well. We wanted to avoid anything that might make his passing painful, like needle sticks. This was hospice. Comfort care and just love. We were spared having to decide to put him down. He died peacefully on our bed Monday afternoon.

It was December 6, 2021. The Feast of St. Nicolas. A bookend.

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The “Serenity Prayer” Both In and Out of Jail

Posted November 18, 2021 by [email protected]

What word could I possibly bring to the men in jail? That was the question.

Each Wednesday afternoon, I join three other men from my church, and we sit in silent meditation with a group of inmates. These men at the Lafayette County Detention Center are awaiting trial or sentencing or transfer to another, more “permanent” place of incarceration.

Prayer on Alcoholics Anonymous medallion

Both our leaders were going to be out of town, and so leadership had fallen to me. We always start the group with a reading, usually from the Psalms. Surely, the psalms of lament ring true to those behind bars — “My God, why have you forsaken me?”

I could have defaulted to the oft-quoted and ever-favorite Psalm 23, “The Lord is my shepherd,” but I wanted to go a different route.

I have no idea what it is like to sit in jail. Guilty or not, these men face uncertain futures and life challenges of which I know nothing. The “Serenity Prayer” came to mind. Long a favorite of those in A.A., this simple prayer has given guidance to alcoholics and addicts for generations. Heck — it has given me guidance.

Originally, it was written as a prayer for worship at a small Christian congregation in Heath, Massachusetts, in the 1930s. Theologian Reinhold Niebuhr wrote it as part of a sermon for his flock. The most common version is just three lines asking for “serenity,” “courage,” and “wisdom.” I included these words in my book, Hard Choices for Loving People, to help those facing the end of life.

In the full prayer below you can see the influence of eastern thought with suffering as a “pathway to peace” and accepting the world “as it is.” This reminds me of the current cliché, “it is what it is.” These are words for all of us, jailed or free.

Here is the complete prayer:

Prayer for Serenity

by Reinhold Niebuhr

God, give us grace

to accept with serenity the things that cannot be changed,

courage to change the things which should be changed,

and the wisdom to distinguish the one from the other;

living one day at a time, enjoying one moment at a time;

accepting hardship as a pathway to peace;

taking, as Jesus did, this sinful world as it is,

not as I would have it;

trusting that You will make all things right if

I surrender to Your will;

so that I may be reasonably happy in this life and

supremely happy with You forever in the next. Amen

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Race and the Place of Death of Our Choosing

Posted November 3, 2021 by [email protected]

If you had a choice, where would you want to die? At home? In a hospital ICU? In a hospice in-patient unit?

It has only been recently that more people have died at home than in the hospital. I used to discourage death in the hospital. As a nursing home and hospice chaplain, I cared for hundreds of patients in non-hospital settings. It seemed to me that dying outside the hospital was the better way to go.

Photo by Alvin Leopold on Unsplash

When I was writing the third edition of my book, Hard Choices for Loving People, I included a section strongly discouraging people from going to the hospital to die. I sent a draft to Dr. Christina Puchalski, who leads the George Washington Institute for Spirituality and Health.

Dr. Puchalski is a pioneer in encouraging physicians to assess patients’ spiritual resources. She also was in active practice at the time, caring for patients in a Washington D.C. clinic. Many of her patients were African Americans with limited income.

She read my draft and saw through my attempt to manipulate readers. “Hank, many of my patients and their families feel more comfortable dying in the hospital,” she told me. “It is very common for people in the neighborhoods I serve to want to go to the hospital in the end.”

So, I modified that section. I listed all the possible downsides to hospitalization but acknowledged some would still prefer to go to a hospital.

A rural physician taught me a lesson

About that same time, I started traveling around the country making presentations to healthcare professionals. My most popular talk, “Helping Patients and Families with End-of-Life Decisions,” includes a series of slides with “Hank’s Theorems” on various end-of-life issues. The first slide says, “The peacefulness of a death is directly proportional to the distance from the hospital ICU.”

I was speaking at a resort in Button Bay, Vermont. A woman came up to me after my lecture and said she took issue with that slide. “I am an ICU doctor in a small rural hospital here in Vermont, and we do not have a lot of resources. We use our ICU as an in-patient hospice and have a lot of peaceful deaths there.”

Now when I show this slide, I also share this physician’s feedback. I clarify that it is the death hooked up to machines with medical staff beating on our chest that many of us want to avoid.

“Fighting to the end” or a “peaceful death”

But what about the people who want to “fight to the very end”? The ones who really do NOT want a peaceful death? Perhaps, aggressive interventions and a medicalized, violent end are their true desires. Then again, many families whose loved ones died in the ICU wish it hadn’t happened that way. They regret that their mom or dad did not have a more peaceful death.

Photo by Sharon McCutcheon on Unsplash

So, here are two extremes of what death could look like: Being hooked up to machines in the ICU or choosing comfort measures only in a non-hospital setting. An article in the Journal of the American Medical Association (JAMA)Network Open and its accompanying commentary investigated this recently.

The research looked at metastatic cancer patients who died in a hospital. Some died in the ICU or had other more aggressive treatments like mechanical ventilation, CPR, or chemotherapy before they died. Others never had these interventions. There was a curious breakdown based on race.

Black, Hispanic, and Asian patients were much more likely to have aggressive interventions before death than White patients. This research could not answer why this was the case. The commentary in JAMA speculated that perhaps it could be due to the informed decisions of the minority patients or their families.

I have cared for patients and their families who did not want the death at home. They didn’t want to face the thought of living in the house where the dead had lain. Or the patient did not want to create an extra burden for the family, which can be so common in the last days. The hospital was the best place for them to reach their goals.

Either way, the hope is that people can have the death of their choosing.

“God has told me my wife is not going to die!”

Posted October 13, 2021 by [email protected]

“God has told me my wife is not going to die!” That’s how my new hospice patient’s husband greeted me.

The nurse warned me that this was coming. The patient had breast cancer that had metastasized to the bone — a usually fatal prognosis.

Photo by National Cancer Institute on Unsplash

He went on to say, “I don’t want any talk about death or dying, only hope and healing.” Months before, I was asked not to return to a home where I had pushed a family to discuss possible death before they were ready.

I was wrong then, and I did not want to blow it again. As a chaplain, I was a guest in their home, so I would abide by his rules. I did say that if the topic of death came up, I would pursue it but would leave it up to them to introduce it. Until then, hope and healing.

Hope and optimism are all around us

There is hope at weddings. I have led many couples to repeat the phrase, “Till death do us part.” One pair deleted this phrase from their vows. It was his third marriage and her second. Another bride asked me to remove, “for richer, for poorer.”

The couples who didn’t edit their vows were being optimistic. The truth is half of all marriages end in divorce.

There’s hope in business. Would entrepreneurs start new ventures if they were not hopeful? Sure, they have a business plan and capital. Yet, there has got to be some self-deception, a bit of hopefulness in the face of long odds.

People who study such things call this self-deception the optimism bias. “The optimism bias is defined as the difference between a person’s expectation and the outcome that follows. If expectations are better than reality, the bias is optimistic; if reality is better than expected, the bias is pessimistic.”

Diversifying hope

It turns out optimists are happier and live longer than pessimists. I wrote in a previous blog about how the self-deception of the placebo effect can take away pain. With these kinds of benefits, so what if an optimist’s expectations are better than reality?

The Journal of the American Medical Association recently published an opinion piece, “Holding Hope for Patients With Serious Illness.” It is about doctors who encounter patients or family members who are hopeful for a happy outcome in the face of a fatal illness. What do they do? They don’t take away the hope but diversify it. Here is their summary:

“How can clinicians help patients hold multiple hopes? One approach may be to ask patients what they have heard about their prognosis from their clinical team. Patients could then be asked, ‘Given what is coming, what are you hoping for?’ It is not necessary to contest the answers nor convince patients to consider other futures. Instead, the clinician could acknowledge the response and ask, ‘What else are you hoping for?’ And then again, ‘What else?’ The point is to help patients balance and diversify their hopes, providing flexible future directions and possibilities.”

“Satan is trying to get me to doubt it.”

I stumbled onto this idea of diversifying hope on my own with the husband who heard a message from God. As I arrived for one visit, he was about to leave for work. He said, “Hank. You know how I said, ‘God told me my wife is not going to die’? Well, I still believe that, but Satan is trying to get me to doubt it. Would you pray for me?” I said I would, and he left.

I turned to the wife, who had just found out the cancer had spread to her liver. “Do you have as much confidence as your husband that you will not die?” She burst into tears and said, “I am afraid if I die, my husband will be disappointed in me.” My heart sank for them both.

Photo by Gus Moretta on Unsplash

On the next visit, I sat with the two of them. I told the husband about my conversation with his sick wife. He immediately got up from his chair, took this poor woman’s hand, and said, “I would never be disappointed in you. You have done all you can to fight this.”

I told them I had two concerns about people in their situation not contemplating the possibility of death. One was some people, believing a patient is not dying, refuse narcotics for extreme pain. (This was not the case with these two.) My other concern was that they might miss some crucial conversations. Conversations about their love for one another, saying good-bye, or finding ways to live fully in the limited time she had left.

The couple assured me they had been doing that, too. They were still hoping for a cure, but they also hoped for enough time to say all that needed to be said. They hoped for freedom from pain by accepting pain medication.

They had already diversified their hopes.

“Mrs. Smith, here is your pain pill.” She Lied

Posted June 14, 2021 by [email protected]

Is it ever okay to lie? Can lying be helpful at times?

Let me think about that.

I was sitting at the nurse’s station in the nursing home where I was chaplain. The most competent and compassionate charge nurse pulled a pill out of someone’s med drawer and said, “I know this is unethical, but I HAVE to do something for this patient.”

She was in what we call “moral distress”—being forced to do something she knew, in most circumstances, was wrong. The patient was in increasing amounts of pain, and the doctor had prescribed a narcotic we did not have in our in-house pharmacy. Delivery could take hours, and the patient was often on the call bell begging for relief from her pain.

So, the nurse rummaged through other patients’ meds and found a vitamin pill. She took the pill to the suffering patient and said, “Mrs. Smith, here is your pain pill.” Within minutes the pain was gone. This is the well-known and much-studied “placebo effect.” It is real, and it provided this patient what she needed.

Medical ethicist Howard Brody has called the placebo, “the lie that heals.”

I just finished reading two books that explore the placebo effect. One is Useful Delusions: The Power and Paradox of the Self-Deceiving Brain by Shankar Vedantam and Bill Mesler. The other is Suggestible You: The Curious Science of Your Brain’s Ability to Deceive, Transform and Heal, by Erik Vance.

“The placebo effect is often described as the effect of mind over matter. But it is actually about something much more powerful: the power of the drama and rituals embedded in the practice of medicine—a theater that involves (often at an unconscious level) deception on the part of the physician [or the nurse] and self-deception on the part of the patient.” (from Useful Delusions)

And this bit of theater acted out by this nurse unlocked the patient’s “Inner Pharmacy” in the words of Eric Vance. He goes on:

“Chronic pain responds exceptionally well to placebos. In fact, pain might be the signature placebo-prone condition in the world today.… Humans do have a form of homemade opioids called endorphins—our own little hidden opium dens tucked away in our brains.… Pain placebos work because the brain self-medicates with opioid drugs.”

The theater that unlocks the placebo effect

How does this work? Vance writes, “Two complementary ideas—suggestion and expectation—are at the heart of unlocking your internal medicine cabinet.” The patient expected to receive relief from the nurse giving her a pill. The nurse suggested this was the pill that was going to bring that relief. Bada boom, bada bing—the pain was gone.

The nurse played her role in the theater. She dressed like the nurse she was. She brought in the pill as she had done scores of times before. She spoke her line, “Here is your pain pill.” The patient responded to all that the acting suggested and expected to find relief. She got that relief from an opioid released by her own brain.

I’ll give the last word to George Costanza from Seinfield: “It’s not a lie if you believe it.”

Life at Fifteen Miles an Hour

Posted May 10, 2021 by [email protected]

Last week, I whined about how having breaking news always at our fingertips has left little room to reflect on that news. This reminded me of a piece I wrote in 1993 for the newsletter at the nursing home where I worked. It was about riding my bicycle on the Outer Banks, slowing down, and discovering what I missed at sixty miles an hour.

“From the Chaplain: Life at Fifteen Miles an Hour,” July 1993

The rain started just as I set out on the first of four days of bicycling that would carry me 185 miles up and down North Carolina’s Outer Banks. I had driven my car from our rented house on the northern end to Avon — 33 bike-miles from Ocracoke at the southern terminus of the Outer Banks. Just as I was unloading my bike, the rain started.

It was 7:00 AM, and I had come too far not to ride. It was also July, so I wasn’t worried about being too cold. But, how often do I get to Cape Hatteras? If I didn’t start on that day, then my goal of riding the length of Outer Banks would be in jeopardy.

Let it go

I put on my rain gear and headed south. I fought the urge to turn around (“This is so stupid!”). Within fifteen minutes, I was soaked through and through, rain gear or not. I found I was much more comfortable being drenched than fighting to stay dry.

It was one of those “let it go” experiences. I figured I might as well give in and enjoy the scenery.

After an hour, I took off my parka and rain pants and peddled in what had become a light drizzle. By the time I reached the ferry bound for Ocracoke Island, the rain had ceased. I still had the bulk of that day’s ride ahead of me.

The distances between points on the map have a feel to them when you go by bike. Each day brought new stretches of highway. The old cottages at Nags Head and new resorts at Duck. The long distances of the Cape Hatteras National Seashore. On that day heading to Ocracoke, I got to know each village (Buxton, Frisco, Hatteras) as I passed through at fifteen miles an hour.

Are we really better going so fast?

I had vacationed several other times on these islands. But, I had never “experienced” them before like I did biking the entire length. You see and hear and feel a lot from riding a bicycle at fifteen miles an hour.

I could read historical markers that are only a blur from a car. (Did you know the first musical notes over the radio were broadcast on Cape Hatteras?) You can look pedestrians in the eye and say hello. Try that at sixty miles an hour.

What else do I miss by not slowing down?

Living in the D.C. suburbs of Northern Virginia sure makes a slower pace difficult. Are we really better because we pack so much into our days? My bike told me, “No, not necessarily.”

“Do Nothing” and “Last Minute Care”…Oh my!

Posted May 20, 2019 by kbrachle

There is a lot of misinformation out there about palliative care and hospice. I just read an interesting blog post. In it, Dr. Cynthia X. Pan describes how she entered “palliative care” in Google Translate and got Chinese characters back. She then translated those characters back into English, and it came back: “do nothing care.”

Wait… there’s more. She did the same thing with “hospice” and it came back as “last minute care.”

This not just a problem with Google Translate or the Chinese language. A lot of people think this about these very appropriate and helpful medical care approaches. I remember back in my nursing home chaplain days when I was just getting my start talking to patients and families about “No CPR” orders I learned an early lesson.

Families and patients hear, “No Care” when you say “No CPR.” They might say, “You mean when mom is dying you are going to just do NOTHING!”

We do lots for dying patients

So, I started leading the conversation with “We do lots for dying patients. We keep them clean and dry. If they are having a hard time breathing, we clear their airway and give them oxygen. We give them pain medications. You can be here to comfort your mom, even get up in bed with her. We just are not going to beat on her chest when her heart stops. That is what the ‘No CPR’ order is about.”

But like Google translator many people hear, “palliative care” and think “do nothing care.” Palliative care is very aggressive keeping a patient comfortable and meeting social and spiritual needs.

Likewise, so many people think hospice is for the last day or two of life, even though Medicare offers to cover a patient for six months (or more). Late referrals are a real problem in hospice. We do our best work if we have, at least, weeks if not months to care for a patient. More time means better pain control, getting the most appropriate equipment into the home, more time for social and spiritual support.

So help me get the word out there. Palliative care is LOTS of care and hospice care is MONTHS of care.

Update: Google Translate seems to have fixed both translations. Progress!

Slow Down, You Are Doing Too Much

Posted August 21, 2015 by kbrachle

“Let her go in peace,” was my bottom-line message.

ER trips, IV antibiotics, bulb syringes … all had become extraordinary measures … in my view.

A woman called me out of the blue yesterday. A hospice worker had given her my Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. I am not exactly sure what she wanted from me as she talked rapidly and pretty much constantly through our close to an hour on the phone.

This never-married woman was the primary caregiver for her 96-year-old mother. The old lady had suffered strokes and dementia was advancing. Because of the swallowing difficulty the daughter was forcing food into her mother’s mouth with a bulb syringe. This is a rubber device, shaped like a tear drop. You suck food into the bulb then stick the narrow end into the patient’s mouth and force the contents out.

Medical professionals encouraged the daughter to slow down

It sounds like the medical professionals in both hospice and the hospital have encouraged the daughter to slow down. But she has sent her mom to the ER three times over the last several weeks. “Maybe if they just give her some IV hydration she would start eating better,” her logic went.

Having listened for about a half hour I asked her, “What is the future for your mother?”

“She is dying.”

Bingo. She said what I was hoping for. In hundreds of such conversations over the years I have asked questions to help caregivers come to their own conclusion about the big picture.

Dying people stop eating and drinking at the end of life. Dying people probably will dehydrate leading to a more peaceful and compassionate death. Dying people talk less and sleep more. Dying people can get aspiration pneumonia once known as “the old man’s friend.”

“I feel so guilty all the time”

Then the lady moved into my chaplain’s area. “I feel so guilty all the time.” She wept.

“Guilty? For what?” Caregiver guilt is not uncommon.

Once, when she mentioned to a doctor she felt guilty for not doing enough, he said, “If you want to feel guilty about something, feel guilty for doing all this to your mother.” I wouldn’t have said it that way. But basically I suggested she start doing less.

I recommended that if she wanted her mother to have a peaceful death at home she not call the rescue squad, she not use antibiotics for aspiration pneumonia, and maybe stop using the bulb syringe. Oh…and she stop feeling guilty.

I actually have little hope she will stop feeling guilty as it has been her constant companion since childhood she told me. But I did tell her, “You can never make a wrong decision. You do the best you can with the information you have at the time. That is all we can ask of anyone. Maybe later will you look back and see how things could have been done differently. But in the moment you just do the best you can.”

Photo by Anwaar Ali on Unsplash

Review of Two “Hospice” Media Events

Posted April 30, 2014 by kbrachle

Here is an article reviewing a This American Life radio program featuring a hospice nurse and an HBO special about a hospice in a prison. Well thought out observations about both identifying with dying patients and NOT identifying with them.

http://www.mcknights.com/this-american-life-and-death-superb-shows-about-hospice/article/344499/