This Is What It's Like to Care for Someone Who is in a Coma

Comas are a staple of pop culture. If a writer needs to stress the severity of an illness or briefly sideline a character for practical or narrative reasons, it can feel easy and logical to fall back on a prolonged state of un- or semi-consciousness. But these depictions of comas—even when they're in the news—make the condition seem like a long nap, peaceful and uncomplicated, requiring minimal medical effort save maybe a feeding tube or breathing machine. This ignores the care and labor that goes into caring for patients in a long-term vegetative state, says Jenny Kitzinger, co-director of the Coma and Disorders of Consciousness Research Center in the UK.

In an effort to deepen pop understandings of comas and the care they entail, Tonic reached out to several doctors, nurses, and researchers who have extensive experience with patients in this state of consciousness. They painted a picture of complex care, especially when a patient first enters a medical facility, which will likely surprise anyone with a media-based understanding of a coma.

Coma is not, as many lay people may assume, a singular mental state. "Coma just means that you lose contact with the environment for a prolonged period of time,” says John Huiss of America’s National Institute of Neurological Disorders and Stroke. Coma patients can have radically different levels of consciousness and responsiveness, anywhere from typical wakeful awareness and complete, unrelenting eyes-closed non-responsiveness to external stimuli.

Patients can also fall into a coma for any number of reasons, Huiss adds, from head trauma to metabolic shock to seizures. As such, a medical team’s first task when a non-responsive patient comes into their care is figuring out what caused them to slip into that state and treating any issues that, if left unchecked, could cause even more severe brain damage. They might administer seizure medications, treat an underlying illness, or place a pressure gauge directly into a patient’s brain to monitor swelling and manually relieve pressure as needed.

Doctors receive ample training in how to detect the cause of a coma, says Christopher Cox, a critical care specialist at Duke University. Even if researchers are still exploring the best ways to treat the underlying cause of a coma, and learning more about the neurological mechanisms involved, they can usually deliver timely, effective, and appropriate care. But this often involves 24-hour monitoring and rapid interventions as patients’ conditions evolve, Cox says.

Coma patients also need nurses to take care of all the bodily maintenance that alert people rarely consider. They require bathing, feeding, and toilet care, says Daiwai Olson, an intensive care nurse with more than 30 years of experience with comatose patients. Bathing usually involves sponge baths. Feeding can be continuous or periodic, but often takes place via a tube. Toilet care can mean catheterization and periodic emptying of a bag, or changing diapers as soon as a patient experiences incontinence. They also require physical therapy to prevent their muscles from atrophying and their joints from freezing up, regular shifts in bed to prevent pressure from degrading their skin and opening up sometimes untreatable sores, and at times oral suctioning to clean out built-up saliva they can’t swallow reflexively.

“The most important thing is that there is not a secondary injury to the patient while you’re waiting for recovery,” Huiss says. “You don’t want to have bed sores, urinary tract infections, aspiration pneumonia, or blood clots that lead to a pulmonary embolism and death.”

While in intensive care, Olson notes, nurses will likely check on patients at least once per hour. Between moving them around to avoid bedsores (about once every two hours) and tasks like feeding and physiotherapy, nurses might end up providing 15 to 30 minutes of care to a patient per hourly check-in. That’s six to 12 hours of nursing care per day, in addition to at least half an hour of concentrated attention from a doctor making check-in rounds per day.

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There is flexibility in that schedule, Olson says, because every patient is different. Although basic care like moving a patient to avoid bedsores is fairly routine, differing circumstances can lead to substantially different needs. Additionally, patients who still have the ability to move—and at times grow restless—may need more attention to make sure they don’t pull out their tubes or injure themselves. Patients who cannot move but are conscious to some degree may need extra stimulation that, as Huiss puts it, “makes their lives worthwhile.” And some doctors or families may also decide that a patient needs more stimulation throughout the day to try to bring them back to consciousness, to name just a few potential special considerations.

Caring for an unresponsive patient can take its toll on medical personnel, Kitzinger says. It can be difficult to try to interpret bodily signs, such as an eye twitch, grimace, or shift in brain waves or heart rate, to figure out if what one is doing is helping or hurting a patient. And it can be hard not to wonder “whether what you are doing is futile, and doing more harm than good to the patient.”

“You always have that sense of sadness, of ‘why can’t I serve them better?’” says V.J. Periyakoil, a palliative care expert at Stanford University, adding that this is usually exacerbated if a patient slipped into a coma while already under one’s care—even if it was all but inevitable. “You start questioning yourself, saying, ‘What am I doing? What could I be doing better?’”

Doctors and nurses can’t just keep their attention on their patients and their own mental states, though. A substantial part of coma care, all of the experts interviewed agree, is helping families and friends cope with the prolonged grief of seeing a loved one comatose, and navigate the sometimes complex medical conditions that need to be made on their behalf. Families can fall into utter conflict; Cox notes that he’s seen some nearly descend into fistfights in the hospital over contentious care decisions. There is no current agreement, Cox says, on the most effective ways to help families, save to be as compassionate, forthright, and clear as possible.

Most patients wake up from comas relatively quickly, Huiss says, although this can be a slow and difficult process, especially if they need to deal with any long-term neurological damage. But some stay unresponsive for weeks, months, or years. A few stay in hospitals long-term, perhaps because they remain in and out of acute states of distress, requiring constant interventions. Most long-term coma patients, however, eventually stabilize to the point that they can be released into alternative care.

Some families, whether for financial or emotional reasons, choose to take comatose loved ones home. However, these stable patients still need hours of assistance per day—being moved, exercised, cleaned, fed, and so on, which can take a toll on everyday people. Likewise, many coma patients wind up in long-term care facilities or nursing homes.

Doctors and critical care nurses often don’t keep up with patients in these facilities, says Zachary Threlkeld, a Stanford University neurologist and consciousness researcher. Some people also claim to have been abused in nursing homes where some coma patients end up, Huiss says. And even well-intentioned facilities can run into financial walls. “There will only be a certain number of nurses to patients, so it depends on what the load is. People can only do what they can do," Huiss adds.

Ideally, nurses in a long-term care facility will be able to provide as rigorous care as a patient received in the hospital. They will also, Huiss says, not lose sight of the humanity of their patients, making sure not only that they don’t develop bedsores or go hungry, but that they stay well clothed, comfortable, and treated like a person, not a meat sack to keep in stasis.

Unsurprisingly, nurses in long-term care facilities who respect and nurture the dignity of coma patients can form unique attachments to and knowledge of them. This can be useful, as Olson notes: “They know when a coma patient is having a good day. They pick up on very subtle cues.” Successfully predicting what a patient might respond well or poorly to can also give them a powerful sense of job satisfaction, Kitzinger adds.

But that sense of ownership and long-term connection can make the distress of seeing a patient muddle along with no sign of improvement despite one’s best efforts, and of interacting with stressed families, all the more acute. Especially because the longer a patient stays in a coma, the less likely they are to wake up.

If a patient’s type or level of consciousness does shift, it can create new complications for a nurse. Doctors may need to be called in. Schedules and routines may need to change. But perhaps more importantly, if a patient who seems like they’re waking up suffers a setback, Olson says, it can be devastating for both their loved ones and their caregivers.

Long-term comas are not incredibly common now. But as we get better and better at helping people survive severe illnesses and trauma, we may find that more and more of us face the risk of seeing a loved one in this un- or minimally responsive state. Hopefully if and when that time comes, we can understand the level of care that our loved ones ideally will, and should, receive to keep them healthy and maintain their dignity. And we can appreciate all the effort doctors and nurses have to put in, physically and mentally, to caring for coma patients.

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