There are few prognoses that carry as much weight as the one made for a patient with a disorder of consciousness (DoC). Erring one way could mean a life ends while there is still the possibility of improvement. Erring in the other direction could mean prolonging a life with no meaningful recovery.
This is why the American Academy of Neurology updated their practice guidelines for disorders of consciousness in 2018 to address these issues. The new guidelines can be divided into four broad areas of care:
- overall care and diagnosis for adults with a prolonged DoC
- prognosis for adults with a prolonged DoC
- care and treatment for adults with a prolonged DoC
- care for children with a prolonged DoC
The guidelines cover topics from referring medically-stable patients to appropriate facilities to increasing patient-arousal level prior to diagnostic testing (and which tests to use).
Of particular note is Recommendation 3: When discussing prognosis with caregivers of patients with DoC within the first 28 days postinjury, clinicians must avoid statements that suggest these patients have a universally-poor prognosis.
This means decisions about continuing treatment are not likely to be made during that initial 28-day window under these guidelines. The rationale for this recommendation includes the fact that treatment withdrawal is more closely associated with the healthcare facility than with factors specific to the patient. In addition, research shows that some individuals with a DoC lasting longer than a month may still have a functionally-significant recovery after one year.
However, Recommendation 3 is not without detractors. A recent article in Stat offering an alternative viewpoint was penned by Robert Truog, MD, a pediatric intensivist at Boston Children’s Hospital and professor of medical ethics, anesthesiology, and pediatrics at Harvard Medical School. Truog is also director of the school’s Center for Bioethics.
Truog pointed out that most ICUs help families make decisions about continuing care within three to five days of injury, and there are several reasons for this timing.
- First, it prevents the family from going through a long, drawn-out process when there is little hope for meaningful recovery.
- Second, it prevents prolonged survival without such meaningful recovery, as some patients will regain the ability to breathe independently without improvement in level of consciousness.
- And third, from a resource standpoint, most ICUs are not equipped for prolonged care of these patients, and rehab beds are too limited in number.
Truog goes on to point out a review published in Critical Care Medicine, which concludes that full supportive care should be offered for 72 hours—far less than the 28 days that the AAN’s Recommendation 3 suggests.
In his article, Truog states, “Paradoxically, the more we learn about the prognosis of acute severe brain injury, the less we seem to know.” Better methods for identifying the patients with the potential for good outcomes are needed. Until then, the weight is still heavy for physicians making these recommendations to families.