What are the “counterarguments” against invasive ventilation?
Invasive ventilation can prolong life. At the same time, despite this prolongation of life, motor symptoms worsen: paralysis and spasticity continue to progress. Ventilation prolongs ALS beyond its “natural” course.
This can lead to symptoms that would not be expected without ventilation or that occur only in exceptional cases. A complete loss of voluntary motor function (a state of “being locked in,” known as locked-in syndrome, LIS), involvement of the eye muscles (restricted eye movement and inability to close the eyelids), or the onset of urinary or fecal incontinence may develop during the course of long-term ventilation. The occurrence of atypical symptoms that are not part of the typical course of ALS (ocular muscle paralysis and incontinence) affects approximately 50% of all patients on long-term ventilation.
Before starting ventilator therapy, it is not possible to reliably predict which patients will experience these limitations. In general, the likelihood of developing eye muscle paralysis (ophthalmoplegia) is increased if ALS is already progressing rapidly (high progression) prior to ventilation or if there were already there were (subtle) signs of slowed eye movement or a reduced range of motion in the eye muscles.
Another challenge associated with invasive ventilation is the need for “ventilator care.” Providing nursing care for an ALS patient on invasive ventilation requires 24-hour care by qualified staff. The increased scope of care is perceived differently by patients (and their families). On the one hand, care provided by a specialized nursing team significantly reduces the burden of treating and caring for an ALS patient. At the same time, 24-hour care can be perceived as a reduction in self-determination and privacy.
The “dependence” on medical technology and other people (caregivers) is exacerbated by invasive ventilation and can place a psychosocial burden on those affected and their loved ones. The setting for invasive ventilation varies widely. Ventilation at home (in the patient’s own residence) cannot be guaranteed in every case.
The factors determining the feasibility of mechanical ventilation in the “home environment” are also very complex (region, living conditions, availability of nursing staff, coverage of costs, and the patient’s attitude). Invasive ventilation is increasingly being provided in shared living arrangements (a private room within a shared apartment) or in long-term care facilities.
As a result, invasive ventilation requires patients to leave their original home environment and move to a new setting (shared living arrangement, long-term care facility). For some patients, the need to leave their familiar home environment in order to undergo invasive ventilation is a reason to reject ventilator therapy.
Overall, the decision-making process regarding invasive ventilation is highly complex and is influenced equally by medical and social factors. The progression of the disease despite ventilation and the psychosocial burdens associated with invasive ventilation represent the difficulties and thus, for the majority of those affected, a “counterargument” against invasive ventilation.