Is ethical to discontinue ventilation once it has been begun

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Reference no: EM133544940

Sanjay Patel is a 4 year old child with Leigh's disease ( progressive weakness with eventual respiratory failure and brain injury). He underwent a tracheostomy 2 years ago when he was severely hypotonic, but he is still able to laugh and interact with his family. He is cared for at home with 16 hours of home nursing care a day, and his parents have been trained to manage his tracheostomy and ventilator for the remaining hours. Sanjay's brain disease has now progressed to a point that he is no longer aware of his environment and has frequent episodes of agitation with tachycardia and hypertension. The Patel feels that his quality of life is now so poor that they want to discontinue ventilation. They would prefer to have him die at home, surrounded by his family, rather than in the hospital.

Is it ethical to discontinue ventilation once it has been begun? Are there special considerations in a patient who has been chronically ventilated?
What resources would be available to help the Patel family stay at home for a ventilator withdrawal?
The Patel family does not want to have Sanjay stuck to place an IV. What other routes of medication administration are available if needed for his comfort?

Reference no: EM133544940

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