SPECIAL REPORT New Guideline for Clinical Management of Persons in Vegetative or Minimally Conscious States
The American Academy of Neurology (AAN), American Congress of Rehabilitation Medicine (ACRM), and the National Institute on Disability, Independent Living, and Rehabilitation Research released a new guideline for clinical management of people in a vegetative or minimally conscious state (Neurology. 2018:August 8).
The guideline was developed by an expert panel that carefully reviewed all available evidence for diagnosis and care for those who are not responsive to their surroundings or aware, termed disorders of consciousness (DoC) for > 28 days, which includes people who have been in a vegetative state (VS) or a minimally conscious state (MCV) for > 28 days.
Because evidence shows that as many as 20% to 50% of patients in a posttraumatic VS will recover even after 3 to 6 months, and approximately 17% of those who are not posttraumatic will still recover after 6 months in a VS, the guideline replaces the term permanent vegetative state with chronic vegetative state (CVS), to reflect that this is not necessarily irreversible. The distinction between a person in an MCV, who has inconsistent but discernable signs of consciousness and a person in a VS, who has no signs of consciousness, remains unchanged.
Ethical, Palliative, and Policy Implications
The AAN published an accompanying article on the ethical, palliative, and policy implications noting that “persons with DoC comprise a population at risk, vulnerable to misdiagnosis and medical mismanagement that can negatively affect their access to ongoing care, rehabilitation, and pain and symptom management.” The authors of this article, Joseph J. Fins, MD, MPH and James S. Bernat, MD laud the guideline for the call to have care provided by knowledgeable practitioners, noting that currently, this is often not provided. They further suggest that the guideline is a landmark that can help us understand societal and ethical obligations to patients with severe brain injuries (Neurology. 2018:August 8).
The first recommendation is that patients with DoC who are medically stable be referred to care facilities staffed by multidisciplinary neurorehabilitation teams trained in diagnosis, prognostication, and care that includes medical monitoring and rehabilitation. Evidence shows that patients have a better chance for recovery in these settings.
Valid and reliable standardized neurobehavioral assessments (eg, those recommended by the ACRM) should be used serially and at intervals determined by the individual patient’s circumstances for diagnosis. Attempts to increase the patient’s state of arousal should be made before each evaluation, and any other medical conditions that may confound diagnosis must be treated appropriately.
If ambiguity in diagnosis remains, use of specialized functional imaging or electrophysiologic studies is recommended. If ambiguity continues after that testing, frequent neurobehavioral reevaluations may be conducted to identify emerging signs of awareness. It is appropriate to delay decisions to reduce care for a length of time agreed upon by the treating clinician and the patient’s health care proxy.
Based on level A evidence, clinicians must avoid statements about universally poor prognoses in the first 28 days for any patient with DoC. This is the only recommendation in the guideline relevant to patients who have been unconscious < 28 days.
Patients who are in a posttraumatic VS should be assessed with the disability rating scale (DRS) at 2 to 3 months postinjury and EEG assessment may also be helpful in prognosticating the likelihood of recovery 12 months postinjury. The guideline makes several recommendations for neuroimaging assessments 6 to 8 weeks after injury and at regular intervals for prognosticating likelihood of recovery in posttraumatic patients within 12 months of injury.
For those whose injury is nontraumatic, the Coma Recovery Scale–Revised (CRS-R) and possibly somatosensory evoked potentials should be used for prognosticating likelihood of recovery after 24 months.
Families should be told that diagnosis of MCS within 5 months of a posttraumatic DoC is associated with a more favorable outcome than a CVS or nontraumatic DoC. When prognostication indicates a likelihood of severe long-term disability, clinicians should counsel families to seek medicolegal assistance and long-term care planning.
Patients with traumatic DoC and no medical contraindications should be prescribed amantadine (100-200 mg/day) during weeks 4 to 16 after injury to hasten functional recovery and reduce degree of disability in early stages of recovery.
Patient and family preferences should be assessed by clinicians early and throughout care to guide decision making. Vigilance for medical complications that commonly occur in the first few months of DoC (identify and treat early) should be maintained and any indication of pain or suffering should be treated.
Families should be counseled that there is uncertainty regarding pain the patient may be experiencing, and there is limited evidence for treatment efficacy. Families should be made aware of risks and benefits of treatment, making it clear that it is not always possible to distinguish between spontaneous recovery and response to treatment.
In children with DoC, assessments used should be validated for use in children. Families should be counseled that prognosis in children is not well defined and there are no established therapies at this time.