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As Sancho et al point out here, there is a paucity of information available about tracheotomy in amyotrophic lateral sclerosis -- when it's best to perform the life-prolonging surgery, as well as what patients, families, and physicians can expect afterward.
They followed 116 patients with ALS; 76 were recommended to receive tracheotomy when they could not maintain adequate ventilation with non-invasive ventilation, or could not produce adequate cough with a cough assist device to manage their secretions.
Exactly half (38) patients elected to undergo the recommended tracheotomy; the other 38 chose palliative care. After tracheotomy, they required an average of 4 weeks in the hospital to transition to home ventilation. After that:
- At the end of one year of follow-up, 8 patients had died -- an impressive and to me surprising one-year survival of 79%.
- 50% required hospitalization in the first year, usually for pneumonia.
Authors argue to avoid nihilism or despair when treating ALS patients who seem to be near the end of life:
Nowadays, starting HTMV should no longer necessarily be considered as the ‘beginning of the end’ for these patients. When the appropriate medical resources are in place and the patients wish to continue living, the old mentality of focusing only on palliative care—which is still common in the management of this disease—must make way for ‘high technology and compassionate care.’
They also make the interesting point that their quoted survival is not far off the international average survival of 83% one year after lung transplant.
Sancho J et al. Home tracheotomy mechanical ventilation in patients with amyotrophic lateral sclerosis: causes, complications and 1-year survival. Thorax 2011;66:948-952.