NYT: | The Terrifying Realization That an Unresponsive Patient Is ‘Still in There’

It must be about 10 years ago that there was an astonishing example of this in my neighborhood. (ETA: My memory played tricks on me; it was much longer than 10 years.

We have a public long term care facility in my neighborhood. Many patients are in this condition. The law is that all patients have to be reassessed at least once every so often–I think it’s 3 years. This does not happen. There’s not enough staff for patients; so these folks get short shrift.

One summer, a local college wanted student speech therapists to do field training. A couple were assigned to this facility. The administrators, thinking that these kids were too inexperienced to help much, decided to use them to reassess the vegetative patients to meet the legal requirement.

A few days later, one of the interns came into the office and said patient X wasn’t vegetative. She was responsive. The admin assumed intern was wrong and told her to do the assessment again. A couple of hours later intern came back and said again the patient was responsive.

The admin was super annoyed but decided to check it out. So, she went to the patient’s room w/intern. The intern said “I’m going to say the alphabet, when I get to the letters of your first name, please blink.” She started the alphabet, got to the right first letter& the patient blinked frantically. Restarted the alphabet for each letter and patient spelled out her first name. Repeated other questions. Are the blinds open? Blink once for yes, twice for no. The administrator said “One person visits you. Who is it?” Did the alphabet. Patient spelled out mother. (Yes, the only visitor she had was her mother. Indeed, the aids had frequently told her mom that visiting was a waste of time. Patient was fully aware of this and later thanked her mom profusely for not listening. She said her mom’s visits a couple of times a week during which she talked about friends and family, read her articles from the newspaper, etc. were the only thing that kept her sane. )

Administrator was stunned. They got her one of those letter boards you can manipulate with your tongue or something.

Patient had “locked in syndrome.” She was completely aware of everything going on around her. Patient later published a book of poetry about her experience.

All because one person actually tried to communicate and explained to the patient that she was assessing whether the patient could hear her.

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