Futility: On Medicine’s Thorns and Thistles (Part 1)
Notes from a Family Meeting, Vol. 4, No. 1
Paul’s family had done their best to keep shifts, but there had been a lapse of a few hours and no one else was there when Roger arrived. He sighed and sat down, but then fidgeted in the chair. Looking around for the TV remote, he saw instead a Gideon’s Bible laying on a countertop in a corner of the room. After some big experience when they were teenagers, Paul became a man of faith. Not so for his brother. Maybe Susan had been reading it the other day. He flipped around the pages, not really reading, and then stopped.
There was a purple petunia pressed over several verses of Psalm 73. Someone must have put it there who-knows-how-long-ago. A child maybe, or a praying wife. He wondered where they were now. Had they buried the room’s previous occupant or welcomed them home?
He closed the Bible, tossing it back onto the counter.
He never found the TV remote, so Roger leaned back in his chair and listened to the ventilator sigh into his brother’s waterlogged lungs.
“One of the most ethically controversial issues in intensive care units (ICUs),” begins a guideline representing the views of several professional societies, “is how to respond to requests from surrogates to administer life-prolonging interventions when clinicians believe those interventions should not be administered.” In common medical lingo, such interventions are known as “futile,” though the guideline recommends the title “potentially inappropriate” for most of them.
I want to consider the landscape of futile or potentially inappropriate treatments in two parts. It’s tempting to rush ahead to communication strategies and the like, but I want to save that for later. Whatever feelings of respect you have for me, to borrow from Benoit Blanc, buttress them now as I assure you we’ll reach those more practical considerations which clinicians seek (and you might as well keep your feelings buttressed then too; I need all the help I can get). Marking that path, let’s head off into less-traveled terrain.
In a previous issue, I observed how an ancient story teaches us something about our psyche. Our longing for power is deep. Returning to those pages, a little further along now, we find things had not gone well for the man and woman God had made. Tasked to care for a garden and in return they would enjoy abundant life, they instead seized power on their own terms. The result was exile from paradise. God cast them out with a curse (and clothing, a note of hope). Here’s part of what God says:
“Cursed is the ground because of you;
With hard labor you shall eat from it
All the days of your life.
Both thorns and thistles it shall grow for you;
Yet you shall eat the plants of the field;
By the sweat of your face
You shall eat bread,
Until you return to the ground,
Because from it you were taken;
For you are dust,
And to dust you shall return.”
Religious believer or not, you might see how this story provides a mythic etiology for the toilsome nature of our work on the face of this earth. This is so often our experience, isn’t it? Our tools corrode, break, or twist in our hands and injure us. Our creations fall apart, fade away, or turn on us. Even our very minds and bodies resist us. We’re distracted, weary, faulty, and vulnerable. Those precious moments of productivity are temporary and, in the end, we fall into the dust and breathe no more. Maybe some mark of our labor will remain, like King Ozymandias, but even that too will turn to dust in time.
The writer of another book in the Hebrew Bible called Ecclesiastes picked up the theme: “‘Futility of futilities,’ says the Preacher, ‘Futility of futilities! All is futility.’” Having tasted anything good that this world could offer, the Preacher saw that all was “futility,” also translated from Hebrew as vapor. Mist that slips away with the breeze. Our life casts up a shape in the air for a moment and then is gone. Futility.
What’s possible in the land of futility? The curse tells us: thorns and thistles. Nothing that would sustain life, nothing good at all. And that’s what it feels like if we consider futility in medicine more closely. What are the promises of futile medical interventions? We sow medicine and reap suffering. That’s not how it’s supposed to be.
Such barren hopelessness resounds in The Blood of the Lamb by Peter De Vries. In the story, a father cares for his leukemia-afflicted daughter at a time when the disease was almost always fatal. While she languished in treatment, he met another father and they struck up a kind of alliance in the trenches:
We fell into a gloomy but curiously companionable silence. I changed the subject by jerking my head once more toward the research building before we turned the corner out of its sight. “We’ve got that to be grateful for, maybe even pious about. Ten years ago our children wouldn’t have stood a chance.”
“So death by leukemia is now a local instead of an express. Same run, only a few more stops. But that’s medicine, the art of prolonging disease.”
“Jesus,” I said, with a laugh. “Why would anybody want to prolong it?”
“In order to postpone grief.”
We scrape at the dust, desperate for sustenance amidst the thorns. Where there’s nothing, there’s nothing but hope to sustain us. That hope was nestled in God’s gift even after his curse, as I mentioned. With their newfound self-wrought wisdom, the humans’ first judgment was to behold themselves and feel shame. They struggled to cover their nudity with some leaves, but God provided for them with animal skins.
Now, again, I hope you can hang with me, religious believer or not. This is telling us something quintessential about the human experience: even when the world is against us, even when everything is falling apart, we might find (or be given) some bit of grace. Some life-giving, life-saving fruit. Some covering for our shame. That speaks to a deep longing of the human heart that plays out every day in every ICU. Futile? Of course. But hope is a mighty contender against futility.
Hope amidst futility in the ICU is the stuff of resident nightmares. “Hope is a dangerous thing,” Red told Andy in Shawshank Redemption. “Hope can drive a man insane.” So said one prisoner to another. So the clinicians also say to the patients and families when they murmur about futility.
Clinicians of a Futile Land
Those clinicians live in the same land of futility. Our technology, as wondrous as it can be, isn’t saving us from this. Whether you call it burnout, compassion fatigue, moral distress, depression, or something else, clinicians are bleeding from days combing the briar patches. Each clinician responds differently, but if you spend enough time standing around looking at a cloudless sky, you’ll soon find yourself cursing the ground too.
For example, while we’ve long abandoned the alchemists’ quest, some folks have found they can make a ton of gold if, instead of lead, they use human blood:
Greed harms the cultures of compassion and professionalism that are bedrock to healing care. Health care executives and board members who know better nonetheless feel compelled to play the games of pricing, acquisition, and revenue maximization that others do. Professionals find themselves trapped in record keeping, coding behaviors, and productivity imperatives that belie the reasons many went into health care in the first place. “Moral injury” is the harvest, with demoralization and disengagement to follow.
…
Salve lucrum is the wrong answer.
What to do about greed? No answer is easy, not least because of the political lobbying might of individuals and organizations that are thriving under the current laxity. The cycle is vicious: unchecked greed concentrates wealth, wealth concentrates political power, and political power blocks constraints on greed.
Others refuse to strike down others. They strike themselves down instead. Shame, grief, exhaustion, and depression drive them to suicide. The suicide rate and prevalence of depression among physicians is higher than the general population, making them occupational hazards.
Still others are just leaving the profession. Some are burned out from working too many hours, but as Eric Reinhart observes: “…the burnout rhetoric misses the larger issue in this case: What’s burning out health care workers is less the grueling conditions we practice under, and more our dwindling faith in the systems for which we work. What has been identified as occupational burnout is a symptom of a deeper collapse. We are witnessing the slow death of American medical ideology.”
Futility, futility. Medicine as an institution, poisoned and delirious, is losing sight of the purpose for which it even exists: to promote, sustain, and restore health.
The resident, the attending, the nurse, the patient, the spouse - all of them stand in a field full of thorns and thistles. Our experience of futility is different, but it’s futility, the ever-present threat of disintegrating back into the dust from which we were made, that haunts us all.
Finding Fruitfulness
Our technology promises so much. In medicine, those who would avail themselves of it hope that it can provide longevity, function, and comfort. Sometimes it does for a while. But even when futility becomes apparent, the technology doesn’t stop promising. I’ll consider that more in part 2 of this series.
Those who wield the technology, on the other hand, the clinicians, sometimes do so with the impunity of a superhero. I’m not using this in the way it was tossed about early in the pandemic. Rather, I’m using it like Andy Crouch does in The Life We’re Looking For: “Effortless power is one of the most distinctive features of what we began, roughly 150 years ago, to call ‘modern’ life. In countless domains, technology has equipped human beings to vastly increase the sensation of strength while vastly reducing the sensation of effort.” He describes that as the “superhero zone.”
Now you might balk at that. It’s taken you lots of effort to learn how to do what you do as a clinician. I can empathize, being one myself. But consider for a moment: some of the most lauded clinicians are those that are most like machines. In medical training, in fact, to call someone “a machine” is a compliment - “She admitted so many patients last night. She’s a machine!” This leads use to conclude, as Neil Postman observed, that “we are at our best when acting like machines, and that in significant ways machines may be trusted to act as our surrogates.” As I previously discussed, relying on the work of Drew Leder, we want to get away from human subjectivity; we want the cool, objective language of the machine. Our model, then, is the machine. And not just a rickety ol’ Tin Man, but a blazing fast, intelligent, never-resting, easily standardized, programmable super-machine. That is the hero of modern medicine.
The tragic irony is that when we hope in our technology like this, it exacerbates the futility we experience in our work because our work is human work. It’s work for humans by humans. When we try to overcome our own humanity by modeling ourselves after machines, we don’t exceed ourselves, we debase ourselves, our work, and our patients. The technical race of efficiency siphons meaning from the very thing we hope will invigorate us. More rigorous application of technology isn’t the answer. What is?
Well, as our patients might tell us in such futile circumstances, we need a miracle.1
Folks have proposed all sorts of responses to the dilemma of futility as it manifests for patients and as it manifests for clinicians. There’s wisdom in those, and I’ll discuss some of them on the patient side in the second part of this reflection on futility.
In Hannah Coulter, one of Wendell Berry’s stories about the fictional town of Port William, Kentucky, he observes, “Love in this world doesn't come out of thin air. It is not something thought up. Like ourselves, it grows out of the ground. It has a body and a place.” This is, of course, a nod in the direction of Eden, where God made humanity from dirt. It also reveres the embodiment of our commitments. Love isn’t a thing out there, an idea floating around without a body. Love is only ever embodied.
This means before we ever consider whether an intervention is “futile” or “potentially inappropriate” for one of our patients, we should behold them as loved and worthy of love. When I reflected on the discussion of miracles at the bedside, I drew on another story by Berry. In it, an old farmer named Burley Coulter has fallen ill. His family, worried about him, takes him to his doctor, who sends him to the local hospital. Soon, he’s transferred to the big city hospital. This may sound familiar to any clinician who has worked in any of these roles: a very sick patient being passed up the chain into ever-more complex care settings. Now, here he is:
“Burley remained attached to the devices of breathing and feeding and voiding, and he did not wake up. The doctor stood before them again, explaining confidently and with many large words, that Mr. Coulter soon would be well, that there were yet other measures that could be taken, that they should not give up hope, that there were places well-equipped to care for patients in Mr. Coulter’s condition, that they should not worry. And he said that if he and his colleagues could not help Mr. Coulter, that they could at least make him comfortable. He spoke fluently from within the bright orderly enclosure of his explanation, like a man in a glass booth. And Nathan and Hannah, Danny and Lyda stood looking in at him from the larger, looser, darker order of their merely human love.”
The physician wasn’t (yet) discussing the futility or potential inappropriateness of their interventions to keep Burley alive. But this family’s love for Burley stands is stark contrast to the “devices of breathing and feeding and voiding.” It’s not systematic. It’s not something understood. It’s something lived. It has a history, one the physician doesn’t know.
We want to rush ahead to talk about how the things we’re doing won’t work to keep someone alive. That plastic and those chemicals may even harm them. There will come a time for that. But for now, do we have eyes to see that in this barren, futile wasteland of someone’s dying, there’s the verdant growth of love? For some, it’s just a small shoot, nurtured after years of estrangement. For others, it’s a mighty tree that has weathered the years and will weather this too - come life or death. For still others, there’s only the memory of love, but enough to remind us that this person was someone’s son or daughter. This love testifies that death doesn’t have the last word.
For clinicians, such reflections reveal we’re not just interchangeable parts. We’re not diagnosis and treatment machines. We’re real people, working to serve real people in desperate, human circumstances. Our machine mentality wants the same outcome whether Dr. Smith or Dr. Jones sees a patient with endocarditis. Maybe the choice of antibiotics will be the same, but clinicians are more than just antibiotic prescribers. Our quest to standardize and even gamify medicine erodes human embodiment, as Drew Leder warned. It vaporizes the love clinicians have for their work, for their patients, and for one another. This isn’t a romantic love; it’s the love of camaraderie, of good work, of a shared moral project, of companionship toward a common good (even the common good). It’s the love out of which something might grow.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Please look at my baby - when physicians should say the word ‘hospice’”
An intimate account of one mother’s journey making complex medical decisions for her very sick child. To the initial surprise of their child’s care team, she and her husband chose hospice instead of a burdensome life-prolonging intervention. She’s honest that this felt like giving up, but then came to see the many ways this was better for everyone, most of all her child (and particularly with the concurrent care model available for children).
“Make the call: engaging the family as critical intervention”
I bet a week doesn’t go by when I’m not confronted with the importance of involving surrogate decision-makers in discussions about a patient’s serious illness before that capacity loses the capacity to make important decisions about their healthcare. This is a strong argument in favor of doing so, and also provides some tools to help approach a conversation when a patient doesn’t want to involve anyone right now.
“What can we learn from simulations?”
An interesting discussion on GeriPal with palliative care researcher Amber Barnato. She discusses her work using clinical simulations to investigate physician bias in decision-making. Fascinating.
Closing Thoughts
“Life can bring great suffering. And eternal life can bring eternal suffering.”
Pinocchio (Guillermo del Toro, 2022)
The Bible’s response to the recalcitrance and brokenness of creation is unacceptable among “moral strangers” (as Tristram Engelhardt called people who attempt to work together while operating from fundamentally different moral foundations). If I wanted to maintain narrative consistency, I would propose a Jewish, Christian (my own spiritual tradition), or Muslim response to this problem. Maybe I’ll do that sometime. For now, my humble proposal is an attempt to support clinicians and patients who have a diversity of religious beliefs or none at all. You can judge if it’s helpful.