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Ethical issues: invasive ventilation in amyotrophic lateral sclerosis
  1. Rossella Spataro1 and
  2. Vincenzo La Bella1
  1. Department of Neurosciences and Experimental Biomedicine, ALS Clinical Research Center, University of Palermo, Palermo, Italy
  1. Correspondence to Dr Rossella Spataro, Department of Neurosciences and Experimental Biomedicine, ALS Clinical Research Center, University of Palermo, via G. La Loggia n. 1, Palermo, PA 9012, Italy; rossellaspataro{at}libero.it

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The first man was a school headmaster. By his eye-gaze system he is able to order coins to enlarge his 10-year collection. His grandchildren extort presents from him in exchange for help. The second was a prefect and even now insists that the flowers in the garden represent the national flag. In spite of his gastrostomy, he still likes to sip his espresso from porcelain cups. The ventilation circuit 24/7 has not changed his custom to read the newspapers and listen to classical music in the living room. That girl is a young mum. She is fed by a tube, but she always makes her little child laugh with the dialectal phrases that she writes on the screen. The surgeon, every day in his electric wheelchair, reaches the creek to admire the sea. He stays in the sun as long as the ventilatory battery allows him to. The teacher, on the contrary, lives in a bed. Around her, her husband mumbles and grumbles about their terrible fortune and never smiles. Another was a shepherd, and he died because an electric blackout turned off the ventilator. The boy's father, instead, is illiterate, but he is the best nurse you could possibly imagine.

Proposing tracheostomy to amyotrophic lateral sclerosis (ALS)patients is not an easy task. While you are choosing the first words, all those different stories follow one another in your mind. As always, the phone is ringing in the room and many people are waiting for you outside the door. It seems a common conversation between doctor and …

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Footnotes

  • Competing interests None.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; internally peer reviewed.