Write Your Own Last Act9 minute read

Steven Kornweiss, MD death, preventive medicine Leave a Comment

Facing Death

One of the great privileges, and most difficult parts of working as an emergency physician, is that I’m with people as they face their own mortality. To my perpetual amazement, many people remain undaunted when faced with critical illness and death.

At times, people face the decision between dying versus prolonging a life hardly worth living. Those who have thought ahead, who have defined what type of life is worth living, are able to choose death with confidence and serenity when the time comes.

That’s how I’d like to be. I’d like to approach my end with tranquility and dignity, to exert my will up until my last breath, to leave a legacy of strength and pride rather than fear and self-pity.

I am doubtful that if I were faced with my own mortality at this moment that I would live up to such grand expectations, which is why I wanted to highlight two inspiring stories that were in the news this week.

Jeff Dickerson

The first is a story about Jeff Dickerson, ESPN’s Bears reporter, who died at age 43 this past week from colon cancer. According to this espn.com story, Dickerson was a beloved straight-talking reporter, father of an 11 year old son, and widower to a wife who died in 2019 from melanoma.

It’s hard to come up with a more heartbreaking story, particularly for his son who has now lost both of his parents. But amidst this tragedy, there is heroism. Here are quotations from those who knew him.

“JD always wants to know how you’re doing," Waddle said. "I’d ask him how he’s doing and his first response is, ‘How are you doing? How are [Waddle’s daughters]?’ The dignity with which he has carried himself through some of the most difficult times any human being would be asked to go through, what his wife went through and the dignity and strength and grace that he showed at her side throughout all of this … I don’t know anybody I’ve met in my 54 years in life who has handled adversity over the last decade with more grace and strength and dignity than Jeff Dickerson. I know a lot of people go through [stuff]. I do. I’m sympathetic to all of it. But what Jeff Dickerson has had to go through the last decade is cruel.”

“I never heard him once, whether it was what Caitlin was going through, with what he has had to go through, I never once heard him pity himself. Ever. Not once have I ever heard him say that this has gotten the best of me, that I didn’t deserve this. It’s amazing when faced with stuff like this, what strength some individuals have. I never heard a cross word, and it never felt like he thought he has been cheated out of anything.”

(espn.com, Dickerson, ESPN’s Bears Reporter, Dies at Age 44)

It’s hard to overstate the sadness of this situation, but it’s invaluable as an example of how we can write our own story even as it comes to an end.

Jaime Osorio Márquez

That’s exactly what Jaime Osorio Marquez did as he chose to end his life last week when he learned that his kidney cancer had returned and was widely metastatic. Rather than live out a painful, pitiful, and hopeless existence, he chose to write his own ending.

“He had beaten back an aggressive kidney cancer in 2009 and again in 2012, when it had returned and metastasized. But increasing pain and his growing intolerance of pain medications compelled him to end his life before his health deteriorated further and he became a burden to his family, said his producing partner Federico Duran of Rhayuela Films, who served as show runner on “A Thousand Fangs.”

“No, Jaime was not killed by the disease. He survived it, defeated it and dominated it. He managed to write and stage a play, direct his second film, ‘The Sacrifice’ (‘7 Cabezas’) and the series ‘A Thousand Fangs,’ a titanic effort that turned out to be one of the most outstanding productions in Latin America; and then, before the disease took over his life again, he pushed ahead of it,” said Duran.

“Somehow, he plotted his own ending, as if he were the writer of his own script. In his moment of greatest glory, he made the decision and put the words ‘The End’ to his own life. Fly high, my brother.”

(nbcnews.com, Jaime Osorio Márquez, Creator of HBO’s ‘A Thousand Fangs,’ Dies by Assisted Suicide at 46)

These stories are remarkable for the strength exhibited by these individuals in facing their own deaths.

I think accepting death and preparing for it is an essential element of living a full life. However, it’s not enough to write our own endings, we must also do our best to age with dignity, not to lose our spark for life. What good is living into our eighth and ninth decades if we become shells of our former selves?

We can only do so much to mitigate the physical aspects of aging, but so much of aging (or not aging) is in our mentality and approach to life.

Live and Let Die

In "Live and Let Die," the second James Bond novel authored by Ian Fleming, published in 1954, we learn how not to age.

In the novel, James Bond, Felix Leiter, and Solitaire pursue Mr. Big (the novel’s villain), to St. Petersburg, Florida.

“Bond caught a whiff of the atmosphere that makes the town the ‘Old Folks Home’ of America. Everyone on the sidewalks had white hair, white or blue, and the famous Sidewalk Davenports that Solitaire had described were thick with oldsters sitting in rows like the starlings in Trafalgar Square. Bond noted the small grudging mouths of the women, the sun gleaming on their pince-nez; the stringy, collapsed chests and arms of the men displayed to the sunshine in Truman shirts.

And, everywhere, a prattling camaraderie, a swapping of news and gossip, a making of folksy dates for the shuffleboard and the bridge-table, a handing round of letters from children and grandchildren, a tut-tutting about prices in the shops and the motels.

‘It makes you want to climb right into the tomb and pull the lid down,’ said Leiter at Bond’s exclamations of horror.”

(Ian Fleming, Live and Let Die)

Fleming lived an adventuresome, productive, and creative life. He died from "heart disease" at age 56 after decades of copious drinking and smoking. Despite early warnings that these practices were killing him, he considered them indispensable parts of his lifestyle. Right or wrong, Fleming wanted to live life fully and hated the idea of losing his youthfulness. He most certainly did not want to be an oldster.

I think the essence of being an “oldster” is that life can become focused around trivialities rather than a creative and productive central purpose. I won’t pass moral judgment on the “oldster” mentality, but personally, I’d like to avoid it, at least as its presented by Fleming. I’d prefer to be like Fleming and Bond — to live a full and grand life up until the end, just with fewer martinis and cigarettes.

Perhaps if you live to a certain age, becoming an oldster is inevitable, desirable even. I don’t know, but I do know that there is a stage of life that comes after oldster but before death that is universally undesirable.

The House of God

In 1978, Dr. Stephen Bergman wrote "The House of God," a scandalous satire that chronicled the medical training of the fictional Dr. Roy Basch. The book is still read by most medical students (or at least it was 10 years ago when I was in training). It’s shockingly relevant even now, 33 years after its publication. One prominent feature of the book is the gomers, patients with end-stage dementia who unnerve the trainees.

“You think I don’t have a grandmother?” asked Fats indignantly. “I do, and she’s the cutest, dearest, most wonderful old lady. Her matzoh balls float—you have to pin them down to eat them up. Under their force the soup levitates. We eat on ladders, scraping the food off the ceiling. I love . . .” The Fat Man had to stop, and dabbed the tears from his eyes, and then went on in a soft voice, “I love her very much.” I thought of my grandfather. I loved him too. “But gomers are not just dear old people,” said Fats. “Gomers are human beings who have lost what goes into being human beings. They want to die, and we will not let them. We’re cruel to the gomers, by saving them, and they’re cruel to us, by fighting tooth and nail against our trying to save them. They hurt us, we hurt them.”

(Samuel Shem, The House of God)

The book is a dark comedy. But, it’s a classic because it speaks painful truths.

People don’t want to live life when they’ve lost the ability to think, move, and care for themselves. But, in our country, we’ve got a cultural and medical setup that often leads people to keep the body alive even when its soul is long gone.

Anyone who has watched a parent or grandparent go through a protracted process of dementia and debility knows what I’m talking about. We don’t want this for ourselves, for our loved ones, or as doctors, for our patients, and yet, it can be hard to avoid.

Preventive Care

What can we learn from Dickerson, Marquez, Fleming, and Bergman?

First, I want to make the point that the first three out of the four people above all died from diseases that can be detected very early (Bergman is still alive), usually before they become deadly. I want to be very careful to emphasize that I don’t know anything about the particular cases mentioned in the stories above. In no way am I insinuating that Dickerson or Marquez received anything but the best medical care. What follows is just general commentary on cancer and cardiovascular disease screening.

Screening Guidelines

At the very least, I think people benefit by following the most aggressive screening guidelines from the ACS and USPSTF that apply to them.

Personalized Screening

There are alternative and more aggressive options for cancer screening that are available to people willing to pay for testing. Insurance companies usually will not cover the cost of screening tests unless they are recommended by guidelines. Unfortunately, it’s well known that guidelines miss a small percentage of cancers that occur in low-risk groups. Guidelines are developed for populations, not for individuals, and this is why it makes sense to have personalized and advanced screening plans that work for individual’s risk profiles and appetite for testing.

Colon Cancer

For colon cancer, there are several testing options including fecal immune testing (Cologuard), CT colonography, and colonoscopy.

Melanoma

Melanoma can usually be found by visual inspection on full skin and ophthalmologic exams, as melanoma can start on the skin and also in the eye.

Both colon cancer and melanoma have relatively high cure rates and 5-year survival rates if they’re found in the pre-cancerous stage or before they metastasize.

Once metastatic, cancer, with few exceptions, is impossible to cure.

Renal Cancer

Renal cancer is of course not visible on external inspection of the body, but it might produce microscopic hematuria as one of its first signs. There is no recommendation for routine screening for renal cancer, but regular urinalysis could be of some use, as could imaging like CT or MRI in select populations.

Cancer Screening by Cell-Free DNA Testing

Blood work has not been historically useful in screening for cancer, but a new type of blood test called cell-free DNA testing (Galleri by Grail) is a significant development. By testing the blood for DNA with specific methylation signatures produced by cancer cells, Grail is able to detect 50 types of cancer (including colon, melanoma, and renal) by testing blood alone. This testing is not sensitive enough to stand on its own. It must be used as part of a broader testing strategy.

Atherosclerotic Coronary Artery Disease

Of course, a disease I’m obsessed with, atherosclerosis, can be evaluated through a combination of blood work and imaging like coronary calcium scans, CT coronary angiograms, and physiologic testing like stress tests. It can be ameliorated to a high degree using personalized nutrition, exercise, and pharmacology.

Living Will and Healthcare Proxy

As unpleasant as it is to think about the end of our lives, we have to do it. It’s a good idea to have a living will and a person you trust to be your healthcare proxy.

Between the two, I think a trusted healthcare proxy (preferably someone with experience in healthcare) is the more important. It’s very hard to anticipate every possible scenario in a living will, which is a document that leaves specific instructions to be carried out in the event you’re incapacitated.

In all likelihood, even if you have a very detailed living will, your next of kin or healthcare proxy will have to make decisions on your behalf. This is why having a healthcare proxy or next of kin who understands your wishes on a conceptual and philosophical level is extremely important.

Live Well, Stay Young, Exit Heroically

Perhaps even more important than trying to extend life and avoid disease are the lessons I learned from the heroes mentioned in this article:

Live life fully. Don’t lose your spark. Pursue a creative and productive purpose even as you age. If you can, write your own last act, and bow proudly and graciously before you walk off stage.

-Steve

Featured Image Credit: Liam McGarry

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