Compassionate, informed advice about healthcare decision making

Posts Tagged ‘Hope’

“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.

“We Were Called to Sacrifice as a Nation. We Didn’t Answer.”

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Do we care? Really? Has our overinflated sense of personal freedom condemned us to fail as a society that cares for each other?

Last year, I wrote about my first experience wearing a mask in public. I realized in the moment of walking into the post office that I was donning the mask out of concern for others. Before Christmas, the same office displayed large black ribbons in honor of a postal clerk who had died of COVID. Did we, the patrons, give him the disease?

During this pandemic, we have all been called upon to make some sacrifices for the common good. Many have made great sacrifices — retail workers, first responders, and healthcare providers, to name a few. The call was much more modest for most of us — wash our hands, wear a mask, don’t gather in large crowds, and get vaccinated.

The call to sacrifice

Contributing opinion writer, Margaret Renkl, reflected on this call to sacrifice in her piece, “We Were Called to Sacrifice as a Nation. We Didn’t Answer.” The article was published in The New York Times this past Memorial Day, a day we remember those who sacrificed all for the common good.

She likened the novel coronavirus to a deadly enemy — not unlike the fascists we confronted and defeated in World War II. My father and millions of men and women in his generation answered the call to join that fight. There was no question that he would go. It’s what that generation did. Our nation depended on those who were willing to sacrifice.

Renkl suggests this sense of national sacrifice was squandered in the Vietnam War. Not only were we misled by our government about the imagined progress of the war effort, but the sacrifice fell mainly on the poor and minorities who could not avoid the draft.

I was fortunate enough to attend college at that time and so was deferred from the draft. But I kept a constant eye on my draft status, wanting to avoid the fate of the others who died in our losing effort.

The false idol of personal freedom

Many feel the call to wear a mask or get a vaccine violates their personal freedom. Rep. Jim Jordan of Ohio put it this way in a congressional hearing in April, “‘Dr. Fauci, when is the time?’ Jordan kept asking. He wanted to know when it was ‘time to pull back on masking’ and ‘physical distancing.’ ‘When do Americans get their freedoms back?’” The Washington Post

Excuse me? We had (and still HAVE) the opportunity to save the lives of tens of thousands of our fellow citizens by wearing masks and getting vaccinated. Why wouldn’t we?

Many choose not to because of “freedom.” What is missed by so many who refuse these simple measures for the sake of freedom is that we do them mainly to protect others, not ourselves. To get to herd immunity, we must have enough of the herd answering the call to “sacrifice” by getting a shot or two.

Renkl’s article also touches on another huge issue of our time: climate change. The loss of a sense of the common good here has an even greater impact on our world. In this case, instead of the elderly and medically at-risk, the others we are protecting by addressing global warming are our grandchildren and great-grandchildren. Are our “personal freedoms” more important than they are?

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Looking for a Sign… Calming Amidst Grief

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I had NEVER seen a street sign like it – “TRAFFIC CALMING AHEAD” – and I collect photos of unique street signs.

Like the one we saw driving home from the Memphis airport the other night: “THIS IS YOUR SIGN TO BUCKLE UP.” (The folks at the Department of Transportation do try to make us smile.)

Or the one I saw years ago when I was speaking in Boulder, Colorado. It was February. I went out one morning for a walk on a pedestrian path. I approached an underpass and could see some patches of ice in the shadows of the bridge.

Not to worry! This progressive, free-thinking university city put up a sign to warn me: “ICE MAY EXIST,” it read. I thought, “This is SO Boulder!”

The sign begged more questions. Ice may or may not exist, correct? Do I exist? If I do exist, how did I come into being? What is the nature of existence? What is the nature of non-being?? Goodness! I was just going out for a walk.

Obvious signs

It’s not just in Boulder that I pondered the meaning of life upon seeing a road sign. While driving home from church in Northern Virginia, I saw a sign that read, “ROUGH ROAD AHEAD.” Ya think? Here I imagined Buddhists writing the road signs with their idea that “life is suffering.”

Then there are the obvious signs. I saw a “WARNING — ALLIGATORS” sign as I put my kayak in the Hillsborough River outside Tampa. The authorities-that-be felt the need to put another sign right below: “NO SWIMMING.” Really? Who was thinking of swimming with the alligators? The people in Florida really are crazy.

 

I was a chaplain for a hospice in Ft. Pierce, Florida, which had a hospice house for patients to spend their last days. There were tables and benches on the grounds for patients, their families, and staff to take a break outdoors. Beside a nearby pond, there was a sign, “WARNING BEWARE OF VENOMOUS SNAKES.” Good Lord, these dying folks have enough to worry about.

Family calming ahead

The “TRAFFIC CALMING AHEAD” sign was on a quiet, tree-lined suburban street in Alexandria, Virginia. This sign was followed by one that said, “SPEED CUSHIONS AHEAD.” I’ve heard them called “speed bumps” or even “speed tables” but “cushions”?

My wife, Sally, and I were in town to attend a funeral for a friend who died after living with ALS for years. Sally had known his wife since before they were married. Over the weekend we twice visited the widow’s home — once the night before the funeral and then for a gathering afterward – and saw the signs.

As we drove to her home, the words on the sign morphed in my head to “FAMILY CALMING AHEAD.” Indeed, it was. The widow and her two college-age children welcomed mostly family into their home the night before the funeral. There was lots of hugging and laughter. The scene was repeated after the service with a larger gathering of friends, business colleagues, and more family.

The grief process can be a rough road for many, but these calming events in the first days are a good place to start the journey.

Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

Signs of Hope Amid COVID

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When will our lives get back to “normal?” Is there hope this will ever happen?

I had cable news on the other day and saw this in the crawl at the bottom of the screen: “For the first time, vaccinations outnumber new hospitalizations 10 to 1.”

I took that as a very hopeful sign.

Think about it. Each time a person goes into the hospital with COVID-19, ten more just got a vaccination. And right now, those getting the shots, are the ones most likely to end up in the hospital if they were to get infected — the elderly and those with pre-existing conditions.

I must say, just seeing that crawl lifted my spirits slightly.

And then, there was the day I got my first dose of the Pfizer vaccine. (Yes, I qualified.) I got in the line of cars, filled out paperwork, inched the car along until it was my turn, received my shot from a National Guard member in fatigues, and joined the wait line for observation. My fifteen minutes were up, and I was on my way home.

My spirits lifted a little more.

Zoom brought out his feelings like nothing else

Laura Fraser (in San Francisco) and her 92-year-old father, Dr. Charles Fraser (in Denver) pose for a portrait via Zoom (Carolyn Van Houten/The Washington Post)

Stories continue to be told about the good that has come out of the pandemic. Just the other day the Washington Post ran a great piece about how Zoom has changed a family’s life. Laura Fraser writes about her 92-year-old father, Dr. Charles Fraser, a former physician living in a retirement facility with limited visitation.

Between his flip phone and clunky old computer, Dr. Fraser did not have the capacity to participate in an online chat. So, Laura writes:

“My husband and I bought a cheap laptop, loaded it with his email account, photos, Zoom and a password written in indelible ink on the keyboard, and mailed it off. After many tries, voilà! There he was on Zoom, with his crooked nose from the time a horse kicked him, and the familiar warm brown eyes. I hadn’t been sure I would see that face again, and I teared up.

“That’s all there is to it?” Dad asked. My sisters and their kids dialed in, and Dad held a smile so long I thought his computer had frozen.”

“Before he signs off, he tells us he loves us.”

Laura’s dad had never been one to talk about his feelings, his childhood, how he felt about his children,  or even how much he missed his wife, now gone ten years. On Zoom he has opened up for the first time. She ends her hope-filled story with this:

“A few weeks ago, over Zoom, Dad was able to see his great-granddaughter for the first time. He was delighted to learn that my nephew and his wife have named her after my mother, Virginia. ‘I just can’t wait to hug her,’ he says. His mood has lifted. He laughs as little Ginny burbles and coos. He does something else that’s new for him. Before he signs off, he tells us he loves us.”

Another little sign of hope in a time that needs so much.

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