Locked-in Syndrome and the Misguided Presumption of Misery


Locked-in Syndrome and the Misguided Presumption of Misery

I1993, Julio Lopes was having a coffee in a bar when he had a stroke. He fell into a coma, and when he regained consciousness two months later, his body was completely paralyzed.

Doctors said the young man’s future was bleak: apart from his eyes, he would never be able to move again. Lopes would have to live with locked-in syndrome, a rare condition characterized by near-total paralysis of the body and a completely lucid mind. LIS is predominantly caused by strokes in specific brain regions; It can also be caused by traumatic brain injuries, tumors, and progressive diseases like amyotrophic lateral sclerosis or ALS.

But almost 30 years later, Lopes now lives in a small Paris apartment near the Seine. He goes to the theatre, watches movies at the cinema and roams the local park in his wheelchair, accompanied by an attendant. A small piece of black, red and green fabric with the inscription “Portugal” dangles from his wheelchair. On a warm afternoon last June, his native country was due to play Spain in a football match and he was excited.

In an interview at his home, Lopes communicated using a special computer camera that tracks a sensor on the lens of his glasses. He made slight movements with his head and selected letters on a virtual keyboard that appeared on the computer screen. “Even if it’s difficult at first, you develop a kind of philosophy of life,” he says in French. People in his condition can enjoy things that others find insignificant, he suggested, and they often develop the ability to see the bigger picture. That’s not to say daily life is always easy, Lopes added, but overall he’s happier than he ever thought possible given his situation.

While research on the quality of life of LIS patients is limited, the data collected paint a picture that is often at odds with commonly accepted assumptions. Well-being assessments conducted to date indicate that up to a third of LIS patients report being severely unhappy. For them, the loss of mobility and language makes life truly miserable – and family members and carers, as well as the general public, tend to identify with that perspective. And yet, according to the data, the majority of LIS patients are much more like Lopes: They report that they are relatively happy and that they would very much like to live. In fact, most people with LIS perform as well on well-being surveys as those without LIS, suggesting that many people underestimate the quality of life of locked-in patients while overestimating their rates of depression. And this mismatch has implications for clinical care, say brain scientists who study the well-being of LIS patients.

Eleven US states and several European countries, for example, have legalized various forms of euthanasia, also known as physician-assisted suicide or medical euthanasia. In these places, families and physicians are often involved in delicate decisions about whether to actively end a person’s life or perform life-prolonging procedures such as mechanical ventilation. Proponents of the right to die, a movement that dates back to the 1970s, have in the past raised concerns about the potentially dehumanizing nature of these interventions, which can prolong a person’s life without improving its quality. Specifically, they argue that LIS patients should be able to choose whether to end their lives or discontinue life-prolonging treatment.

Brain researchers don’t disagree, but they worry that inaccurate and negatively biased ideas about what it means to live with LID could tip the scales unduly. “It’s important not to project our thoughts and feelings onto others,” said Steven Laureys, neurologist and research director of the Belgian National Science Foundation. While people without disabilities might say “this is not a life worth living,” he added, the evidence doesn’t necessarily support that.

He and his colleagues want to make sure their research is shared with LIS patients, their families and doctors. Researchers are also trying to better understand what factors contribute to a patient’s overall satisfaction.

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