Locked-in syndrome and the misplaced presumption of misery

Locked-in syndrome and the misplaced presumption of misery

In 1993, Julio Lopes was sipping a coffee at a bar when he had a stroke. He fell into a coma, and two months later, when he regained consciousness, his body was fully paralyzed.

Doctors said the young man’s future was bleak: Save for 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 totally lucid mind. LIS is predominantly caused by strokes in specific brain regions; it can also be caused by traumatic brain injury, tumors, and progressive diseases like amyotrophic lateral sclerosis, or ALS.

Yet almost 30 years later, Lopes now lives in a small Paris apartment near the Seine. He goes to the theater, watches movies at the cinema, and roams the local park in his wheelchair, accompanied by a caregiver. A small piece of black, red, and green fabric with the word “Portugal” dangles from his wheelchair. On a warm afternoon this past June, his birth country was slated to play against Spain in a soccer match, and he was excited.

In an interview at his home, Lopes communicated through the use of a specialized computer camera that tracks a sensor on the lens of his glasses. He made slight movements with his head, selecting letters on a virtual keyboard that appeared on the computer’s screen. “Even if it’s hard at the beginning, you acquire a kind of philosophy of life,” he said in French. People in his condition may enjoy things others find insignificant, he suggested, and they often develop a capacity to see the bigger picture. That’s not to say daily living is always easy, Lopes added, but overall, he’s happier than he ever thought was possible in his situation.

While research into LIS patients’ quality of life is limited, the data that has been gathered paints a picture that is often at odds with popular presumptions. To be sure, well-being evaluations conducted to date do suggest that up to a third of LIS patients report being severely unhappy. For them, loss of mobility and speech make life truly miserable—and family members and caregivers, as well as the broader public, tend to identify with this perspective. And yet, the majority of LIS patients, the data suggest, are much more like Lopes: They report being relatively happy and that they want very much to live. Indeed, in surveys of well-being, most people with LIS score as high as those without it, suggesting that many people underestimate locked-in patients’ quality of life while overestimating their rates of depression. And this mismatch has implications for clinical care, say brain scientists who study wellbeing in LIS patients.

Eleven US states and several European countries, for example, have legalized various forms of assisted dying, also known as physician-assisted suicide or medical aid in dying. In these places, families and clinicians are often involved in fraught decisions about whether to actively end a person’s life or pursue life-extending interventions such as mechanical ventilation. Advocates for the right to die, a movement that dates back to the 1970s, have historically raised concerns about the potentially dehumanizing nature of these interventions, which can lengthen a person’s life without improving its quality. They specifically argue that LIS patients should be able to decide whether to end their lives or stop life-extending treatment.

Brain scientists do not disagree, but they worry that inaccurate and negatively-skewed ideas about what it means to live with LIS could unduly tip the scales. “It’s important to not project our thoughts and feelings” onto others, said Steven Laureys, a neurologist and research director of the Belgian National Fund for Scientific Research. While non-disabled individuals might say, “‘this is not a life worth living,'” he added, the evidence doesn’t necessarily bear this out.

He and his colleagues want to ensure that their research is shared with LIS patients, their families, and physicians. The researchers are also trying to better understand which factors contribute to a patient’s overall sense of satisfaction.

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