Guidelines for Treating Prolonged Disorders of Consciousness

Joseph T. Giacino, PhD

New guidelines from the American Academy of Neurology addressing care for patients with disorders of consciousness (DoC) seek to improve diagnosis and ongoing medical and rehabilitative care in these cases.

The guideline consists of 18 recommendations and rationales for each. It was based on a review of available scientific studies on diagnosis, natural history, prognosis, and treatment for patients with prolonged disorders of consciousness (lasting 28 days or longer).

"People are sometimes misdiagnosed due to underlying impairments that can mask awareness," guideline lead author Joseph T. Giacino, PhD, of Harvard Medical School and Spaulding Rehabilitation Hospital in Boston in a statement.

"An inaccurate diagnosis can lead to inappropriate care decisions and poor health outcomes,” Giacino continued. “Misdiagnosis may result in premature or inappropriate treatment withdrawal, failure to recommend beneficial rehabilitative treatments and worse outcome. That is why an early and accurate diagnosis is so important."

The only recommendation applicable to the first 28 days of DoC is that physicians must “avoid statements that suggest these patients have a universally poor prognosis.” The guidelines reference studies showing that some patients with prolonged disorders of consciousness are able to make recovery leading to functional recovery and a return to employment. One study referenced reported that among patients with traumatic or nontraumatic DoC, almost half regained daytime independence at home and 22% returned to work.

According to the guideline, physicians must also counsel family members “to seek assistance in establishing goals of care and completing state-specific forms regarding medical decision making (eg, medical orders for life-sustaining treatment [MOLST] forms) if not already available, applying for disability benefits, and starting estate, caregiver, and long-term care planning.”

Additionally, clinicians are strongly advised to identify patient and family values and preferences regarding care, and to revisit this conversation over time to account for changes over the course of the DoC.

In an editorial commentary on the guidelines, Joseph J. Fins, MD, MACP, and James L. Bernat, MD, addressed the ethical, palliative, and policy aspects of care management for patients with prolonged disorders of consciousness.

“The Guideline demonstrates that patients with disorders of consciousness (DoC) comprise a population at risk, vulnerable to misdiagnosis and to medical mismanagement that can negatively affect their access to ongoing care, rehabilitation, and pain and symptom management,” said Fins and Bernat. “To address this problem, the Guideline affirmatively calls for the provision of skilled care by knowledgeable practitioners—a standard of care that is currently unavailable to most patients except those few who are lucky enough to gain admission to the small number of elite specialized rehabilitation centers.”

In support of recommending a specialized setting for patients with disorders of consciousness, the guideline authors refer to a retrospective study of the long-term survival of adult trauma patients. The study found that 3 years after discharge, the cumulative mortality for patients discharged to home or inpatient rehabilitation facilities was significantly lower than for patients discharged to a skilled nursing facility.

“If its recommendations are heeded, the Guideline will be viewed as a historic work that helped transform the care of patients with DoC and deepened society’s appreciation of the ethical mandate to work towards this laudable goal,” concluded Fins and Bernat.

The guideline was endorsed by the American Academy of Physical Medicine and Rehabilitation, American College of Surgeons Committee on Trauma, and Child Neurology Society.

The guideline was published in Neurology as well as in the Archives of Physical Medicine and Rehabilitation.

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