The State of Coma Care: A Call for Action

Wendy Ziai, MD, MPH

ON MARCH 22, 2021, the Neurocritical Care Society (NCS) and the Curing Coma Campaign launched the first World Coma Day, an international 24-hour symposium with a mission of awareness of coma as a treatable and recoverable clinical entity aimed at encouraging medical providers, scientists, industry, patients, and patient advocates to get involved in the Curing Coma Campaign; and motivating partnerships to participate in specific current and future scientific efforts devoted to curing disorders of consciousness.

More than 1200 participants attended this year, and we are looking forward to this annual event to raise awareness of disorders of consciousness and coma for many years to come. But before March 22, 2022, there is much work to be done. There is hope for patients with prolonged disorders of consciousness as a result of brain injury or other conditions and our goal is to improve patient outcomes related to coma.

Recovery From Coma Is Possible

While we have learned a great deal about coma, there is still limited knowledge with the overall care of the patient who is comatose. From a clinical perspective, we are familiar with what happens in the intensive care unit (ICU) and the hospital during the early stages of coma, but we don’t often observe or fully understand the trajectory of recovery in rehab and the home care environment. That is the key to unlocking the path toward curing coma.

The Challenge: How Do We Assess Coma?

A major challenge in neurocritical care is a patient with altered consciousness. Attempts to improve patients with altered consciousness have focused principally on separate treatment of specific types of brain injury or dysfunction rather than primarily on common pathways that could lead to treatment. There is a lack of large data sources tracking long-term recovery metrics and we need to develop better statistical and machine learning approaches for analyzing this data to effectively develop and implement treatments to impact recovery.

Given the unifying importance of alteration in consciousness and cognition and the major gaps in current management, one goal for the Curing Coma mission is developing an international registry for the collection of data to begin to determine common elements across assessments. There are a number of committees that are actively working on common data elements and registry creation. As it stands, the way we currently assess coma is generally imprecise. Up to 40% of assessments are inaccurate because of lack of useful measures for serial assessment, fluctuations in the clinical exam, and medication-induced impairment.

As a community, we first need to determine what data elements are required as a baseline for clinical assessment and determination of response to treatment. We all need to collect the same type of data to even begin working toward a common understanding. Agreement is needed on definitions of disorders of consciousness so that we can develop treatment options in a consistent way. Once we agree on how to collect and assess data at meaningful time points, we can then design proof-of-concept intervention studies to better manage and ultimately treat disorders of consciousness with a universal approach.

Avoiding Pessimism

Another challenge we need to tackle is the ability to better describe recovery trajectories of coma patients over the intermediate and longer term. Over 70% of deaths resulting from a traumatic brain injury occur in the early stages as a result of the early withdrawal of life support, which could be premature in some cases. As clinicians in the care of acute neurocritical patients, we tend to have an overly pessimistic outlook on coma recovery, and this may negatively impact the long-term outcomes of patients. Because of this uncertainty and limited knowledge regarding trajectory of recovery, we may be making premature and potentially inaccurate predictions for patients.

How to Prognosticate

Prognostication is one of the biggest challenges we face, especially in the short term. Without a crystal ball, we cannot predict how patients are going to look in 3 months, 6 months, or even 1 year from the onset of coma. Ultimately, we need to be flexible in how we prognosticate and develop an individualized approach in how each patient is managed. No 2 patients are ever alike, and in flexibly managing the way we react to a patient based on personal biology and biomarkers, we can hopefully make better-informed decisions for long-term care. Evaluating the brain’s response and capacity for recovery will likely include electroencephalography, functional imaging, genetic and blood-based biomarkers, and other tools. By studying the underlying causes and mechanisms affecting patient consciousness and responsiveness and more fully understanding the biological mechanisms of coma, we can begin to develop appropriate treatments and therapies to promote recovery from coma.

Over the long term, we don’t have enough information to determine functional outcomes. We need to track patients over multiple years to have useful predictive potential. This will enable those involved in the acute care of patients in a coma the ability to give a prediction along with a confidence interval around that prediction. For example, in the ICU, there may be pressure for early decisions to be made for patients who are comatose. From financial and hospital space issues to considerations for organ donation and even unconscious bias, the pressures in an acute care setting to make decisions quickly can sometimes usurp the time needed to monitor a patient to determine a long-term care strategy. Armed with multiyear data and the ability to make much stronger outcome predictions, the approach to how we care in the early stages for patients who are comatose is likely to change.

As such, we must keep in mind that not every patient has the potential for long-term recovery, so developing protocols for treating patients on both ends of the spectrum is something we are hoping to achieve.

A Call to Action

In 2019, the NCS launched the Curing Coma Campaign as its signature clinical, scientific, and public health effort. The Curing Coma Campaign is the first global public health initiative to tackle the unifying concept of coma as a treatable medical entity.

By understanding the biology of coma and involving everyone engaged in the care of coma patients—doctors, scientists, long-term caregivers, industry, regulatory agencies, patients’ families, and even recovered patients—we can develop support and collaboration with a unified approach to disorders of consciousness, resulting in improved patient outcomes.

This is our moon shot: We are all working together for the grand challenge of awakening hope.

Wendy Ziai, MD, MPH, is a professor of neurology at Johns Hopkins University and a member of the NCS Curing Coma Campaign Scientific Steering Committee. For more information on NCS and its Curing Coma Campaign, visit https://www.curingcoma.org/home