Compassionate, informed advice about healthcare decision making

Archive for the ‘Comfort Care’ Category

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.

In Hospice, Jimmy Carter is NOT Giving Up On…

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As I write this on February 24th, former president Jimmy Carter is at home under hospice care.

The popular story is that Carter had a failed presidency, but post-White House, he was the most successful ex-president ever. Now, 42 years after suffering a landslide defeat to Ronald Reagan, some have changed the first part of that narrative by seeing strength in his single term in office.

Place: Savelugu, Ghana, Date: Feb. 8, 2007, Credit: The Carter Center

In his years after leaving Washington DC, Carter traveled the world serving the poor by bringing healthcare to underserved areas and building houses. His work also included building democracies by helping nations hold free and fair elections. Oh yeah — when he was home in Plains, Georgia, he also taught Sunday school at the Baptist church.

I expected the media to perpetuate a hospice misconception — one of my pet peeves — and they did not disappoint. On ABC World News Tonight this past Monday, David Muir read the teleprompter, “Carter will forgo medical intervention receiving hospice care at home.” I felt like yelling at the TV, “Hospice care IS a medical intervention.” But I didn’t.

Even the announcement of this news from the Carter Center alluded to this mistaken belief. “After a series of short hospital stays, former U.S. President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”

Here is what this unfortunate wording insinuates: You seek medical care for a cure. You give up medical care and choose hospice care when you are dying.

Hospice care is one of the best medical interventions you can have. Hospice focuses on the patient, not the disease. The goal is to comfort by any medical means necessary. Hospice care also concentrates on supporting the family as well as the patient.

Place: Austin, Texas, Date: 2014, Credit: LBJ Library

The Carter Center’s announcement also reveals how so many people turn to hospice “After a series of short hospital stays.” I don’t know if these hospital stays were for treatment of the former President’s cancer or if he had another fall. Often when a patient is aging, frail, and seriously ill, patients and their families will eventually conclude, “No more trips to the hospital.”

This is how it should be. There is nothing wrong with seeking medical intervention at the hospital when needed. I also know that some people go to the hospital to die, not wanting to burden the family by dying at home. But most people say they would rather die at home with their family gathered around them if given a choice.

Thank you again, Mr. Carter, for showing us a way to peace.

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

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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.

Does Hospice Hasten Death? Some say “yes”— Most say “no”

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Boy, was I blindsided?

I posted a quote from a study that examined the general public’s understanding of hospice on my Hard Choices for Loving People Facebook page. 30% of the respondents said they felt hospice hastens death. My Facebook post got hundreds of likes and comments, a lot of traffic for my humble page. I had no idea this would engender such a strong response.

“This morphine is wonderful”

Misconceptions can be based on misconceptions. When people hear that a friend is receiving morphine, they automatically think death is near. Not necessarily. Because of this close association of morphine with death and the association of getting on morphine in hospice, many assume that’s what hospice does — hastens death. Not so. Morphine controls pain and relaxes breathing.

I had an elderly patient once who was dying of respiratory failure. She was so short of breath that it was a major chore for her to move from her bed to a chair. She got great relief from morphine which she took for months before dying. She told me once, “I’ve always been opposed to drugs, but this morphine is wonderful.”

The coincidence of death after morphine

Many of the respondents to my post who agreed that “hospice hastens death” told stories of family members going on hospice and dying soon after. Why should this surprise us? Hospice requires that a patient is within six months of dying, although the average patient is only on hospice for two weeks.

I am sure it is just a coincidence that a patient receives a dose of morphine and dies shortly after. The family then thinks, “she died because they gave her morphine.” She did not. She was on hospice because she was dying, and she just happened to take her last breath after taking morphine.

No incentive for a hospice to hasten death

It makes no sense that hospice would want to hasten a patient’s death. The more days the patient is on hospice, the more reimbursement the hospice receives. It is totally against their financial interest to hasten death.

Hospices also want to make sure their patients are as pain-free as possible. Families of hospice patients fill out surveys after the death of their person. They rate the hospice on pain control, among other items.

So, yes, hospices use morphine to keep patients comfortable, not hasten death. They want to have the patient as long as a natural dying process will allow, and they want favorable survey results.

The research is clear; patients live longer on hospice

Many studies confirm that hospice patients live longer than nonhospice patients suffering from the same disease. One study looked at dementia patients. On average, the patients on hospice lived longer than those who never entered a hospice program.

Another study looked at five different kinds of cancer and congestive heart failure. Once again, the patients who were under hospice care lived longer than the nonhospice patients.

So, rest easy. If you have a life-limiting illness and want to live longer with a better quality of life, go into hospice as soon as possible.

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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.

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

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Music engaged dementia patients

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

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

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

Avoiding Tube Feeding and Hospitalizations for Advanced Dementia Patients

Artificial feeding tube

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

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

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

Good and Bad Outcomes in Nursing Homes

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

Careful hand feeding

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

 

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

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

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

 

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

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

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

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

I want to drop off a “happy”

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

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

Jesus and Mary as the “hospice team”

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

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

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

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

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

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

Ending Cancer Screenings at MY Age

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

Photo by Hush Naidoo Jade Photography on Unsplash

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

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

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

My greatest fear is dementia

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

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

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

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

In my case, let the cancer grow

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

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

Charlie and His Last Days in Hospice

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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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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 “Serenity Prayer” Both In and Out of Jail

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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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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.

 

Race and the Place of Death of Our Choosing

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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!”

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“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.

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