What locked-in syndrome feels like differs from person to person. In most cases, the person is almost entirely paralyzed but aware of everything around them. This can be a terrifying and isolating experience. It can also be incredibly frustrating as it is difficult for a person with locked-in syndrome to communicate their needs, and miscommunication is common.
What Locked-In Syndrome Is
Locked-in syndrome is a condition where the person cannot move their limbs, trunk, or head, and cannot communicate verbally. Most retain vertical eye movement, and some people can also blink. Despite these impairments, they remain cognitively intact and fully aware of their surroundings and the situation they are in.
The fear and anxiety those with locked-in syndrome describe in the first days and weeks following their injury or illness would only be natural in this situation. In many cases, their families and doctors are unaware the patient is “locked in” until an electroencephalograph or other test shows full brain activity.
How Locked-In Syndrome Feels in a Patient’s Own Words
Communicating with locked-in syndrome is difficult, but it is possible. Some patients have even written books or journals. In the BMJ, Nick, a young man with locked-in syndrome, described the emotional part of living with locked-in syndrome as follows:
“Words can’t describe the situation I have been left in—but this is as close as I can get it: an extremely horrific experience that I wouldn’t wish on my worst enemy. The incredibly immense frustration levels at times have eased slightly over the years because of physical and health gains I have made.”
Beyond the fear and emotional weight of living with LIS, he also mentioned daily frustrations that most take for granted.
“An itch is completely unbearable and incredibly frustrating because I can’t scratch it.”
One of our clients also discussed daily hobbies and joys that we take for granted.
“He loves basketball. It kills him that he can’t play. He’ll watch every now and then, but not like he used to because it makes him upset that he can’t react how he wants to react,” she said about her husband, a man living with LIS. “He enjoys getting out of the house, going to the park. He loved the beach, but that’s hard now.”
Do People With Locked-In Syndrome Feel Pain?
Whether someone with locked-in syndrome (LIS) feels pain depends on the type of locked-in syndrome they have been diagnosed with. People with the incomplete form of locked-in syndrome may feel sensation or pain throughout parts of their body.
According to a study published in Frontiers in Neuroscience, almost 50 percent of people with locked-in syndrome experience pain. The small study surveyed 29 people with locked-in syndrome and their experiences with pain before and after being diagnosed with LIS. Sixteen patients reported that they experienced pain within the past two weeks. Of the 16, 10 reported leg pain that they rated an eight out of 10. Thirteen patients reported that the pain was not present before their LIS diagnosis.
Approximately 60 percent of the patients reported that the supine position (i.e., lying flat on your back with your legs extended and arms at your sides) aggravated the pain. Seventy-five percent of patients took medication several times a day to manage the pain, but rated the efficacy at five out of 10. Those who underwent non-pharmacological treatments, such as osteopathy, rated the effectiveness at three out of 10.
People with LIS can also experience headaches and other conditions.
Treatment and Care for Those With Locked-In Syndrome
There is no standard treatment or cure for locked-in syndrome. This condition has an immediate and significant impact on quality of life. Pain and discomfort related to nerve damage or remaining in the same position for hours may be possible in some patients and require medication. Some people also need assistance with sleeping, regulating body temperature, breathing, and other autonomic functions.
Thanks to the ability to move their eyes, as well as advances in brain-computer interfaces, communication is easier today than ever before for people with locked-in syndrome. This significantly improves quality of life for those with LIS.
Preventing secondary infections and injuries, primarily bedsores and pneumonia, is key to remaining healthy despite suffering from locked-in syndrome.
Prognosis for People with Locked-In Syndrome
Most people with locked-in syndrome never recover significant motor function or the ability to communicate verbally. However, they can live fulfilling lives thanks to eye gaze devices, brain-computer interface devices, customized wheelchairs, and other equipment. However, the cost of this highly advanced technology is too much for many families, especially if their insurance will not pay toward the purchase or rental.
Many people with locked-in syndrome can remain at home with support from their family and home health care visits. While significant recovery has been reported in some cases, this is rare. In most cases, ongoing care will be necessary for the rest of their lives.
Legal Capacity and Care Decisions in Locked-In Syndrome
Locked-in syndrome (LIS) presents one of the most striking disconnects in medicine: a person who is cognitively intact, fully aware, and legally competent, yet almost entirely unable to move or speak. This creates profound practical challenges in healthcare and law. The person with LIS is aware and able to make their own decisions; however, communicating them can be difficult.
Regardless of the difficulty in communicating wishes and decisions, the U.N. Convention on the Rights of Persons with Disabilities states that, “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.”
What Is Legal Capacity?
Legal capacity is not a medical diagnosis; it is a legal determination based on whether an individual can understand information relevant to a decision, appreciate its consequences, reason through options, and communicate a choice. Because LIS leaves cognition intact, patients meet this standard. They are not (and must not be treated as) legally incapacitated simply because communication is difficult or slow.
In practice, however, the gap between legal principle and clinical reality can be significant. The default assumption of incapacity, driven by a patient’s inability to respond in conventional ways, remains a documented risk. Misdiagnosis itself is a serious concern. Some patients in apparent vegetative states may, in fact, have LIS or related conditions, meaning their expressions of preference may have been systematically overlooked or dismissed.
That is why it is so important for family members and caregivers to be watchful for signs of cognizance and also advocate for their loved ones with LIS.
How People with LIS Can Be Considered in Care Decisions
Where communication is established, even at minimal levels, such as through eye blinks, gaze-tracking technology, or brain-computer interfaces, patients should be included in all care decisions:
- Consent for procedures
- Treatment refusals
- Advance care planning
- Discharge arrangements
Augmentative and alternative communication (AAC) specialists play a vital role here, and their involvement should be standard rather than the exception.
The ethical and legal imperative is to presume capacity, invest in communication, and ensure that the effort required to hear an LIS patient’s voice is never treated as grounds for bypassing it.
Pursuing Compensation for Locked-In Syndrome
Locked-in syndrome caused by a traumatic brain injury or medical malpractice may support legal action to pursue compensation to pay for ongoing care, pain and suffering, and other expenses and losses. The Newsome Law team will review your case for free and can take action on your loved one’s behalf.
Let us determine your eligibility to pursue compensation and offer advice on how to proceed with your case. Call today for your free case evaluation and let our locked-in syndrome lawyers go to work for your family.