Disorders of Consciousness standards balance prognostic uncertainty and hope

DoC encompasses a wide spectrum of clinical syndromes—which include persons presenting in a state of coma, vegetative or unresponsive wakefulness, minimally conscious, post-traumatic, or acute confusion—caused by traumatic brain injury (TBI) and other causes. According to the Journal of Head Trauma Rehabilitation, only 13% of persons with moderate and severe brain injury have access to inpatient rehabilitation during their recovery. 

“In fall 2024, the American College of Surgeons collaborated with the American Congress of Rehabilitation Medicine to publish the updated clinical practice guidelines for the treatment of TBI with important information for the field,” said Terrence Carolan, Managing Director of Medical Rehabilitation and Aging Services, CARF International. “For example, the guidelines acknowledge that recommending withdrawal of life-saving treatment within 72 hours of a TBI diagnosis is arbitrary, and that a longer period of observation and treatment is needed to assess a person’s potential for recovery.”

Rationale

There are 153 self-identified DoC programs in the world and CARF accredits 35 organizations with this program. These programs deliver services that focus on the assessment, treatment, and care of individuals with DoC and may be located in a hospital, skilled nursing facility, or long-term care hospital in the U.S.; acute hospital or hospital with transitional rehabilitation beds in Canada; or, in other countries, a setting that is comparably licensed.

“We anticipate and are already seeing an increase in the number of individuals with DoC. This will increase with time as more healthcare systems in the United States, Canada, and around the world improve the identification, treatment and medical management of those with DoC.”

Before deciding to create the DoC Specialty Program standards, CARF collected information that included 12 months of interviews with stakeholders (individuals and family members) which were recorded and analyzed for themes; related efforts across the field of rehabilitation; and recently published literature and resources. This groundwork showed strong signals supporting the creation of standards to be used in the peer-led accreditation survey of DoC programs.

ISAC Process

In January 2025, CARF convened a three-day in-person ISAC meeting that involved a wide variety of medical rehabilitation disciplines and had virtual participation of an individual with lived experience and a family member. The ISAC used a consensus process to create draft standards.

The standards address the essential components of a DoC specialty program, including:

• An efficient pre-admission process that facilitates entry to the DoC program by collaboration with acute care providers for appropriate referrals and informed communications with the families/support systems of the person served.
• Admission decisions based on the clinical status of the person served and independent of social, psychological, or demographic characteristics.
• Use of a transdisciplinary approach to provide a complete and clear understanding of a person’s condition. Where the team works together to assess consciousness using trusted tools that fit the specific population and setting. They also use treatments that help the person wake up, manage medical issues, and improve function. This approach supports accurate diagnosis and guides effective, evidence-based care for people with complex medical and rehabilitation needs.
• Families/support systems are partners in decision-making and receive education and support to effectively care and advocate for their loved ones, navigate fluctuations in the clinical status of the persons served, and balance prognostic uncertainty and hope.
• Personnel receive competency-based training on the unique aspects of persons with DoC.
• Personnel also receive ongoing support for their own well-being.
• Advocates for the needs of persons served and their families/support systems.
• Demonstrates the commitment, capabilities, and resources to comprehensively address the needs of persons with DoC.

Field reviews

CARF’s standards development process includes two rounds of online open feedback periods called field reviews. Proposed standards are first reviewed by the International Advisory Council—which represents a broad spectrum of stakeholders, including persons served, providers, and professionals in the health and human services field. Then there is a public field review where service providers, consumers, caregivers, payers/regulators, insurers, and other interested individuals are invited to provide anonymous feedback on the standards through an online survey.

There was a robust response to the recent DoC field reviews with feedback and comments from 139 respondents.

Final steps

Carolan and the ISAC members will use the input from the reviews to finalize the standards that will be published in the 2026 Medical Rehabilitation Standards Manual, which goes into effect July 1, 2026.

An organization seeking accreditation for a Disorders of Consciousness Specialty Program will also need to meet the applicable standards in Sections 1., 2., and 3.A. of the standards manual.

“This is about awareness, access, and advocacy,” said Carolan. “We’re at a point where healthcare providers are not always able to identify individuals that have DoC. There’s still a need for improved awareness of what DoC is—not just by the public, but by healthcare providers at all levels of care. This is a very specific part of brain injury rehabilitation and there is a profound lack of access to specialized care. We are going to call on every CARF Surveyor to be vigilant and identify how they can advocate for this group of individuals because there is a tremendous need to support access to specialized care for these individuals.”