Ventilation education program helps with real-life decisions

After a 10-year period of analysis, Douglas A. McKim, MD, associate professor at the University of Ottawa, and colleagues at The Ottawa Hospital Rehabilitation Centre and Pembroke Regional

Hospital published a study entitled, “Formal ventilation patient education for ALS predicts real-life choices”. The focus of the study was ventilatory support education for patients and caregivers. The results were published in the January 2012 online issue of Amyotrophic Lateral Sclerosis.

The researchers’ objective was to evaluate a single-session, hands-on education program on mechanical ventilation for ALS patients and caregivers. The program was designed to observe whether decisions about ventilator use made after the education program would reflect real-life decisions. Questionnaires were given to 26 patients and 26 caregivers on four separate occasions to assess their knowledge of ventilatory support, to get feedback on the nature of the program, and to report the individual’s emotional well-being.

Respiratory failure is a major cause of death for those with ALS. Mechanical ventilatory support provides an extended survival, but such interventions come with serious ethical decision-making dilemmas. Many patients do not get the chance to discuss their wishes until emergency intubation, when a tube is inserted into an external or internal orifice of the body to add or remove fluids or air. Conflict might arise when there is no consent for interventions in case of a respiratory failure.

It is important for ALS patients and caregivers to understand the nature and limitations of both non-invasive ventilation (NIV) and invasive ventilation (IV). NIV is the administration of ventilatory support without using an invasive artificial airway, such as endotracheal tube or tracheostomy tube, by using a mask or nasal prongs to provide ventilatory support through a patient’s nose or mouth.

The results of the study showed that patients and caregivers demonstrated improvements in knowledge about ventilatory support. There were also no changes in the self-reported emotional well-being of the patient or caregiver. The choices of ventilatory support at one month reflected the real-life clinical choices ultimately made by 76 per cent of patients. The remaining patients chose palliative care.

The study clearly showed that the ventilation education program gave those affected with ALS and their caregivers the necessary knowledge and information to make difficult decisions. Instead of awaiting the onset of respiratory failure, the program allowed discussion of ventilatory choices available. The result was reduced uncertainty by patients and caregivers since they were better informed regarding NIV and IV.

The researchers concluded, “Hands-on patient and caregiver education results in improved knowledge, assists in decision-making with respect to ventilatory support, and is not associated with a worsening of affect. It also provides for an accurate prediction of real-life choices and avoids undesired life support interventions and critical care admissions."

  For more information about the study, please visit
http://informahealthcare.com/eprint/RnRynZWZegjBJIRdGj92/full.