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Six to twelve percent of patients were certain they wanted tracheostomy and 28.2% wanted PEG. Preferences were related to later treatment choices: 20% of patients who found tracheostomy acceptable had one in the follow-up period, compare with 3.4% of those not in favor (p < 0.001). For PEG, similar findings were obtained: 48.5% who initially found it acceptable had PEG, versus 8.1% of those not in favor of this treatment (p < 0.001). Patients who found the interventions acceptable were more likely to be recently diagnosed, expressed greater attachment to life, and showed greater declines in pulmonary function over follow-up. Patients with ALS were able to express their preferences for life-extending or ameliorative technologies and ma de choices consistent with these preferences. However, patient preferences may change over time, and clinical education efforts are required throughout the course of disease. |
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