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#168 (Mis)understanding the locked-in state
The locked-in syndrome is a rare clinical consequence following many types of neurologic injury. In general, the locked-in patient is fully paralyzed, with perhaps minimal function of the fingers, the eyes, or the mouth. What's more, the gross motor dysfunction is enormously disproportional to the cognitive function of the individual. The locked-in patient is conscious and completely aware of their surroundings. They can often hear, see, smell, and feel just as any other person would. But because of their profound physical disability, they have a very limited means of communicating even the simplest thoughts. "I feel hot." "My head hurts." "My cheek itches."
It may surprise you that the patient's perspective of their condition is wholly different from how the healthcare provider or caregiver imagines it to be. This week on the program, Dr. Lauren Elman (Pennsylvania Medical Center ALS Multi-disiplinary Clinic) reviews this discrepancy. Dr. Elman also shares her experience managing this inevitable consequence of ALS when all life-sustaining measures are desired.
REFERENCES
- Patterson JR and Grabois M. Locked-in syndrome: a review of 139 cases. Stroke; a journal of cerebral circulation. 1986;17:758-64.
- Trail M, Nelson ND, Van JN, Appel SH and Lai EC. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Journal of the neurological sciences. 2003;209:79-85.
- Rousseau MC, Baumstarck K, Alessandrini M, Blandin V, Billette de Villemeur T and Auquier P. Quality of life in patients with locked-in syndrome: Evolution over a 6-year period. Orphanet J Rare Dis. 2015;10:88.
- Kuzma-Kozakiewicz M, Andersen PM, Ciecwierska K, Vazquez C, Helczyk O, Loose M, Uttner I, Ludolph AC and Lule D. An observational study on quality of life and preferences to sustain life in locked-in state. Neurology. 2019;93:e938-e945.
- Niedermeyer S, Murn M and Choi PJ. Respiratory Failure in Amyotrophic Lateral Sclerosis. Chest. 2019;155:401-408.
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By Jim Siegler, MD | Neurologist | Father | Friend of dogsThe locked-in syndrome is a rare clinical consequence following many types of neurologic injury. In general, the locked-in patient is fully paralyzed, with perhaps minimal function of the fingers, the eyes, or the mouth. What's more, the gross motor dysfunction is enormously disproportional to the cognitive function of the individual. The locked-in patient is conscious and completely aware of their surroundings. They can often hear, see, smell, and feel just as any other person would. But because of their profound physical disability, they have a very limited means of communicating even the simplest thoughts. "I feel hot." "My head hurts." "My cheek itches."
It may surprise you that the patient's perspective of their condition is wholly different from how the healthcare provider or caregiver imagines it to be. This week on the program, Dr. Lauren Elman (Pennsylvania Medical Center ALS Multi-disiplinary Clinic) reviews this discrepancy. Dr. Elman also shares her experience managing this inevitable consequence of ALS when all life-sustaining measures are desired.
REFERENCES
- Patterson JR and Grabois M. Locked-in syndrome: a review of 139 cases. Stroke; a journal of cerebral circulation. 1986;17:758-64.
- Trail M, Nelson ND, Van JN, Appel SH and Lai EC. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Journal of the neurological sciences. 2003;209:79-85.
- Rousseau MC, Baumstarck K, Alessandrini M, Blandin V, Billette de Villemeur T and Auquier P. Quality of life in patients with locked-in syndrome: Evolution over a 6-year period. Orphanet J Rare Dis. 2015;10:88.
- Kuzma-Kozakiewicz M, Andersen PM, Ciecwierska K, Vazquez C, Helczyk O, Loose M, Uttner I, Ludolph AC and Lule D. An observational study on quality of life and preferences to sustain life in locked-in state. Neurology. 2019;93:e938-e945.
- Niedermeyer S, Murn M and Choi PJ. Respiratory Failure in Amyotrophic Lateral Sclerosis. Chest. 2019;155:401-408.