ABSTRACT
Absent from the list of indications for long-term ventilation (LTV) is its use for
children with severe central nervous system impairment, including those with severe
mental retardation or in a permanent vegetative state. Over a two year period, we
evaluated eight children with severe CNS dysfunction for whom long-term ventilation
was being contemplated. Of these eight patients, three were in a permanent vegetative
state and the remainder were severely neurologically impaired, with minimal cognition.
The following recommendations were developed: (1) LTV for patients in a permanent
vegetative state is inappropriate. (2) In a patient with severe neurologic disease,
the process of informed consent must be viewed as dynamic; once the patient's condition
is diagnosed, discussion should begin about the likely course of the disease (upper
airway obstruction, respiratory failure, or both) and available treatment options.
(3) Continued efforts must be made to resolve conflicts between healthcare professionals
and surrogates concerning aggressive support of children with severe CNS dysfunction.
Discussions should continue even after a decision to provide long-term ventilation
is made. (4) Currently, requests by surrogates for LTV in patients with severe neurologic
impairment are usually honored because of respect for family values. (5) Physicians
and other healthcare professionals should develop an open and fair process for determining
inappropriate care. (6) Once LTV is initiated, efforts to transfer the child to home
or a long-term care facility should be made. Further life-saving support should be
discouraged. (7) Irremediable patient suffering is reason to refuse a surrogate request
for LTV. A patient's preservable existence might be so torturous, painful, or filled
with suffering that continued medical intervention would be inhumane or abusive.
Keywords
chronic ventilation - child, central nervous system injury - child, vegetative state
- child, ethics - inappropriate care
