The Medical Care That Helps No One
My 10 years as an ICU nurse have shown me that futile care is confusing and traumatic for family members, demoralizing for doctors and nurses, and dehumanizing for patients.
Early in my career as an ICU nurse, a chatty resident and I were working together at the bedside of a profoundly ill patient. The resident asked me how I liked my job. Looking at the young man in front of us, I told him that I’d been surprised to learn how much we did for patients we knew were not going to get better. A fungal infection had caused large abscesses in this patient’s brain, surgery hadn’t healed him, and numerous signs—his unstable vitals, his extremely poor neuro exam—indicated that if it was unlikely he would survive, it was obvious he would never wake up. His swelling brain was putting pressure on his optic nerve, causing his pupils to dilate and raising the threat of herniation, in which the brain is squeezed through the hole at the bottom of the skull. Days ago he had been impossible to sedate; now he required no sedation, passively receiving breaths from the ventilator. “Oh yeah,” the resident said with a shrug. “It’s crazy.”
Americans openly discuss many problems in health care, such as out-of-control costs, greedy insurance companies, and understaffing. But not so much futile care, which is generally defined as an intervention that does not benefit the patient. It is a subjective term, but concerns about “medically futile” treatment “at end-of-life have risen over the past decade,” according to a 2022 review in BMC Palliative Care. In one study, critical-care specialists at five ICUs reported that 11 percent of patients received futile treatment, and another 8.6 percent received treatment that was probably futile.
My 10 years as an ICU nurse have shown me that futile care occurs everywhere, and that it is confusing and traumatic for family members, demoralizing for doctors and nurses, and dehumanizing for patients. My experience has also shown me that most Americans are not prepared for what can happen in an ICU. As health-care professionals, we need to pull back the curtain; as a society, we need to encourage people to have difficult conversations and make difficult decisions about what forms of care are acceptable to them, long before the moment of crisis.
At a party some years ago, two residents and I stood apart from the cheerful crowd, trading horror stories about “coding” patients (performing CPR with drugs and intubation): coding a patient multiple times (“She probably didn’t have an intact rib left,” my friend said); coding a 93-year-old for more than an hour. We weren’t shocking one another; we were venting with gallows humor, which sometimes feels like the only thing health-care underlings can do when medicine extends human tragedies beyond their natural limits. I commented that we shouldn’t code people who are so far gone that we don’t even stop to wonder how they would feel about it. Of course I knew how naive this sounded—if the patient doesn’t have an order limiting care, we do everything, “full code”: That’s just the way it is. One resident replied with a grin, “I hate hospitals.”
Conversations among nurses about getting “do not resuscitate” and “do not intubate” orders are commonplace; some jokingly describe the DNR/DNI face tattoo they’ll get for fear their advance directive won’t be found at the crucial moment. I remember an older nurse shaking her head about a patient receiving a central line—a larger and longer-lasting IV placed in a large vein and threaded close to the heart—and saying, “When it’s my turn to get a triple-lumen femoral line, just don’t bother.” The shrugging, the eye-rolling, the intentions to personally avoid such sorry fates: Notice the passivity with which we accept the reality of providing care that we know doesn’t help.
Hopeless codes are one thing, but what disturbs me more—and happens more often—is providing intensive care to people who have lost the ability to communicate or move, who will not recover but are prevented from dying. Because of powerful drugs that boost blood pressure and normalize cardiac function, and machines that perform the work of vital organs, preventing someone from dying immediately is far easier than returning them to health.
Because people can live long-term on ventilators, receiving medication and nutrition through feeding tubes, many patients can be stabilized, survive, and leave intensive care only to live on in limbo, able to do literally nothing but lie in bed, many of them permanently unconscious, sometimes with eyes open but completely unable to communicate or move. Meanwhile, medical professionals clean them, suction their oral and tracheal secretions, turn them, draw their blood, and treat every irregularity in their blood work or vital signs. In this context, the inabilities to breathe, move, eat, and communicate are not problems that must be solved; rather, they become baseline conditions that factor into the discharge plan.
Some people would consider rescuing a patient who then lives in a state of profound disability and dependence to be beneficial; others would not. To me, providing physically invasive medical care to keep people alive when they are past the point of returning to any sort of waking life feels morally compromising, not to mention cruel. But what I think and feel doesn’t matter. What matters is what the patient would think, and whether the people who make choices about the patient’s care both know what the patient would think and understand the likelihood that their choices will have this result. This is often not the case.
In American hospitals, the standard is to keep patients alive by all means possible, unless they or their surrogate decision makers actively choose to limit interventions. This means that even when medical providers know that a patient will never make it out of the ICU, or that the patient will only ever be able to lie in bed unconscious after being stabilized, we will continue to provide life-sustaining care. Ideally, the surrogate understands the patient’s prognosis as well as their expected quality of life. But the situation is often not ideal. Hospital staff are always busy; families may be unavailable; both doctors and family members may feel uncomfortable discussing these sensitive issues.
Most people have not had clear conversations with their families about the types of medical interventions or life support they would like to receive: About two-thirds of Americans have not completed any advance health-care directive, and only 32 percent have discussed their wishes for end-of-life care with their family. Although it’s nice to think that people who are close to death can discuss their wishes with their loved ones, all health-care workers know that you can be well one day and on life support the next, at any age. Moreover, many Americans have low health literacy, which the CDC defines as the ability to “find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” Critical care is unfamiliar and complicated, and family members’ emotional stress in these circumstances makes processing information difficult.
Palliative care is more available than it used to be, but unsurprisingly, it is disproportionately accessed by richer and more educated patients. Although I have seen families from across the socioeconomic spectrum choose to “do everything,” natural death is arguably becoming a privilege enjoyed by the few. A large, multi-study review published in the journal PLOS Medicine found that low socioeconomic position “is associated with adverse healthcare outcomes towards the end of life, including increased odds of hospital versus home death, increased odds of using acute care services in the last 3 months of life, and reduced odds of receiving specialist palliative care in the last year of life.”
Predicting the future for critically ill patients is not a simple matter, and many patients who require intensive care have long and uncertain roads to recovery, and may need to adjust to a very different life. I’m not talking about these patients, but about those who will do nothing for the rest of their life but passively receive care. These are the patients who haunt me, because I can’t believe that people would choose to live that life—and I know that, much of the time, they haven’t chosen it.
I will never forget a patient who had been cared for at home—bedbound, nonverbal, fed through a tube, and immobile—by health aides after multiple strokes. He had no family or personal contacts in his medical record. He had slipped into dementia without any advance care planning, and was now brought to the ER actively dying after another stroke—his breathing inadequate and his heart rhythm unstable. He was intubated, medicated, and admitted to the ICU. His limbs were stiff and swollen, and because he could not possibly pull out his breathing tube, he was on minimal sedation. Neither the social worker who coordinated his home care nor his general physician was willing to discuss moving him to comfort care; they said they just kept up his appointments and medications. As if he would live forever.
So while the social-work and legal departments began the slow process of obtaining a court-appointed health-care proxy (I’ve never heard of a court-appointed proxy doing anything other than maintaining the status quo, or of one even visiting the patient in the hospital), we provided intensive care, waiting for him to stabilize enough to get a tracheostomy so that he could go to a nursing home on a ventilator. He no longer had a choice. Unlike most patients in this condition, the poor man was awake, and his eyes were on me. I tried to soothe him with my voice, my hands, and eye contact. And I lied, saying that it was okay, that we were helping him.
Medically sustained limbo between life and death does not happen only to people whose primary illness or injury is neurological. Brain damage from lack of oxygen can be caused by cardiac arrest, for instance. I worked a shift in the understaffed medical ICU last year and was nervous that the patients would be unfamiliar and challenging—I’ve always worked on a neuro unit—but a nurse said, “Your assignment is easy, just two vegetables and a walkie-talkie.” These “two vegetables” were now medically stable, on ventilators with tracheostomies, fed and medicated through tubes implanted in their stomachs, and awaiting placement in long-term care. Such unfortunate outcomes are not the natural or inevitable consequences of the injuries or illnesses the patients suffered. They are the consequences of using intensive interventions to medically stabilize the patients despite their devastating injuries.
Certainly, people have the right to live this way, and to be cared for. But because these patients live like prisoners, with no self-determination and no free will, and without even the ability to comment on their circumstances, the bar should be high for treating them this way. We should know they want this, otherwise it is extraordinarily inhumane. But the bar is low. They may not even have known it was possible to end up this way.
Perhaps the eeriest thing about these patients in limbo is that their very voicelessness makes them invisible. Studies on the condition of ICU survivors have identified “post-intensive care syndrome,” which refers to new or worsening physical, mental, and neurocognitive disorders “that negatively affect daily functioning and quality of life in survivors of critical illness.” But the data on PICS exclude these worst-off patients because they cannot participate in testing or give informed consent.
For example, a large study on the incidence of neuropsychological dysfunction in ICU survivors “excluded patients with substantial recent ICU exposure … patients who could not be reliably assessed for delirium … patients for whom follow-up would be difficult … patients for whom informed consent could not be obtained; and patients at high risk for preexisting cognitive deficits owing to neurodegenerative disease, recent cardiac surgery, suspected anoxic brain injury, or severe dementia.” Such exclusions result in an unrealistically rosy picture of the ICU-survivor population, and raise the question of what it means to survive.
Nurses and doctors become accustomed to offering medical assistance that doesn’t help people, normalizing the situation—which makes it all the more difficult for family members to resist the momentum of these interventions. We become jaded, burying the anguish and confusion of providing care that feels more like torture until it feels routine. When I was a new nurse, shocked by what I discovered in the ICU—nobody had told me! I thought intensive care was for saving people’s lives!—I asked senior nurses how they had come to terms with treating patients who they knew were not going to get better. “You have to have a little bit of separation of Church and state,” one said, meaning you have to shut down your thoughts and feelings to tolerate doing the work.
At the core of this problem is that health-care workers have very different perspectives from families, and may fail to communicate them, resulting in confusion about the patient’s situation. A recent study of surrogate decision makers in the neuroscience unit where I work found that nearly all surrogates rated their understanding of the patient’s medical condition as excellent or good. But they were largely unable to correctly identify the patient’s reason for admission, pinpoint the organ systems being treated, or name all of the assessments and interventions performed. Similarly, a study conducted in a trauma ICU found that even though families reported having high-quality communication with the surgical team, many of them misunderstood the surgeons’ take on the patient’s prognosis. Finally, consider this blunt demonstration of the chasm between medical and lay points of view. In a large survey conducted at Rush University Medical Center and the University of Chicago Medical Center, researchers found that almost 70 percent of the medical ICU and cardiac ICU doctors, nurses, and nurse practitioners reported that a patient they had cared for had received a “slow code,” defined as “a practice where physicians and nurses pretend to conduct Advanced Cardiac Life Support but do not provide full resuscitation efforts with energy or enthusiasm because of the belief that the code is medically futile.” The most common reason given for conducting a slow code was that it served as a middle ground between what providers and families thought was best for the patient.
These data are not reassuring, but acknowledging the disjunction is the first step toward fixing it. Public-health campaigns tend to focus on what people should do to stay healthy—get vaccinated, get a mammogram, get tested—but they’ve neglected to teach people what it means to be sick. There is ample opportunity for improvement here. Indeed, if one good thing came out of the pandemic, it is that people are more aware of what intensive care is, what ventilators do, what being intubated means. But we need to go further and actively educate people about our bodies, about how they work and about how they fail.