There are several treatments that can be done to facilitate recovery of disorders of consciousness (DoC) and there are a number of people who may be involved in providing those treatments. This section will guide you in understanding some treatments, who may be involved in their treatments and what they do, and kinds of medications that may be helpful. It is important to note that not all of these treatments have a lot of evidence to support that they are effective. However, these are the current general practice guidelines for managing your loved one's care.
Who will be treating my loved one and what kind of treatments do they do?
You will see different clinicians at different levels of care/facilities your loved one is in. Below are the phases for recovery and who may be involved in your loved one's care.
Patients recovering from severe brain injury need a broad range of medical, surgical, and rehabilitation services. Initially, in the intensive care unit (ICU) and acute stage, the goal is to help your loved one stabilize medically and prevent secondary complications.
What happens during the acute hospital stay?
From Model Systems Knowledge Translation Center
This provides information about the care team working in the acute phase of injury and what their role is in taking care of your loved one.
As a person with a DoC recovers their needs change and a more comprehensive team of rehabilitation services may be provided. This most often occurs when your loved one is ready to transfer to a different level of care i.e., Long-Term Acute Care Hospital (LTACH), Skilled Nursing Facility/subacute rehabilitation, inpatient rehabilitation, or specialized DoC rehabilitation.
The rehabilitation team may include a - physical therapist, occupational therapist and speech-language pathologist, nurses, doctors, neuropsychologists, dieticians, respiratory therapists, social workers/case managers, etc. who work together to provide treatments that support your loved one’s recovery. They provide education, training, and support to help you understand the recovery process and why and how their treatments may work. They should meet with you regularly to update you on their assessments and treatments and allow you to ask questions and give input on a person with DoC recovery. Below is a general description of some of the clinicians and their roles:
Interdisciplinary Management of Traumatic Brain Injury
This link describes the team members that will be involved in your loved one’s rehabilitation journey.
Below is a list of potential providers and clinicians who will be treating your loved one and generally what they do in working with your loved one in DoC:
- Provides general medical care, monitors complications and orders medications as needed.
Physical Medicine and Rehabilitation Physician
- Physical medicine and rehabilitation physicianas are specialized doctors who are trained in managing your loved one’s rehabilitation needs.
- They assess and treat a person with DoC for medical, physical, emotional, and behavioral needs.
- They work closely with therapists to provide coordinated care and help you to understand the recovery process and next steps in care.
- Neurologists are doctors that specialize in neurologic diagnosis and treatment.
- They monitor patient’s cognitive recovery, recommend medications that supports recovery and may be available on a consult basis to guide the team and family on diagnosis and prognosis if needed.
- They specialize in seizure management.
- Psychiatrists are doctors who assess and diagnose depression, anxiety and other issues that may occur after brain injury.
- They may recommend medications that may support recovery.
- Pulmonologists are the doctors who assess and treat breathing problems.
- They work with the team to maintain your loved one’s airway, manage the tracheostomy or ventilator needs and assist the team in determining next steps for weaning the tracheostomy or ventilator.
- Respiratory therapists provide treatment that help with breathing and management of secretions.
- They work closely with pulmonologists to manage airway and assist in tracheostomy and ventilator weaning.
- Nurses provide daily care for patients including bathing and overall hygiene, bowel and bladder management, skin care and frequent re-positioning in bed or chair.
- They administer medications as prescribed by the doctor, assesses, and monitors medical status and reports issues and needs to the medical team.
- Psychologist and neuropsychologists assess and assist team in understanding cognitive and behavioral recovery. Initially this may include monitoring arousal and consistent behaviors that may show signs of recovery.
- Dieticians assess the patient’s nutritional needs to support their recovery, as often they cannot swallow or eat.
- They make recommendations for types of feeding to support calorie intake while your loved one is on a feeding tube.
- Physical therapists assess and treat your loved one in managing his/her ability to move. This may include rolling side to side in a bed, getting in and out of bed and getting in and out of a chair. As your loved one gets better, they will assess their sitting balance, and ability to stand.
- They will primarily focus on your loved one’s lower body. They may recommend splints or casting for legs to treat tone or spasticity and provide range of motion exercises for their legs.
- They will also work closely with other therapists and nurses to provide a consistent way to manage your loved one’s physical needs and provide input into their ability to respond to the treatment.
- Occupational therapists will assess levels of consciousness using different assessment tools.
- They provide interventions to support arousal like sensory stimulation.
- They primarily focus on your loved one’s upper body. They may recommend splints or casting for arms to treat tone or spasticity and provide range of motion exercises for their arms.
- They assess your loved one’s ability to participate in basic daily living tasks like bathing, dressing, grooming, toileting etc. They provide interventions help your loved one gain as much independence they can in these areas.
Speech Language Pathologist
- Speech langauge pathologists will assess levels of consciousness using different assessment tools. They will be involved in assessment of all areas of cognition as your loved one recovers
- They will assess your loved one’s ability to swallow and provide recommendations for when it is safe to eat. Different types of assessments may include a bedside assessment or may include a video x-ray. This x-ray can see the entire swallowing mechanism and how it is functioning.
- They will determine when it is safe to introduce food and fluids. They may recommend certain food textures to keep your family member safe.
- They also focus on finding best ways for a person with DoC to communicate.
Social Worker / Case Manager
- Social workers and case managers provide education about brain injury. They will help to make referrals to support the family’s needs for finances, potential guardianship, housing, and discharge options.
- They coordinate insurance benefits and funding sources.
- They will coordinate with the whole team to develop an appropriate discharge plan
- Recreational therapists treat and help maintain the physical, mental, and emotional well-being.
- They provide activities that support interaction using a variety of techniques including arts and crafts, animals, sports, games, dance and movement, drama, and music.
- They will coordinate outings and training with families in the community to prepare for discharge.
Neurologic Music Therapist
*Music therapy is not available in every facility. Ask your care team if music therapy is available for your loved one.
- Neurologic Music therapists may work with your loved ones to get responses using music as a therapy tool. Their sessions include playing musical instruments and engaging your loved one to play along if they are able.
- Playing familiar music may enhance arousal to help your loved one’s recovery.
What Medications can be Used to Improve DoC Recovery?
There are no medications currently approved by the Food and Drug Administration (FDA) for treatment of arousal and cognition after brain injury. Some medications are used in an “off label” manner to help with cognition.
- Amantadine (Symmetrel) – Amantadine is the only medication that has been shown in a randomized clinical trial to improve the rate of recovery in patients with DOC due to TBI. Clinical practice guidelines suggest that the treating time should consider this medicine unless your doctor thinks your loved one should not take it based on medical reasons.
- Zolpidem (Ambien) - Zolpidem is approved for difficulties sleeping. A small number of patients with disorders of consciousness had increased alertness after taking zolpidem in a few studies.
Sometimes the treatment team will suggest other medications to help with recovery. If other medications are recommended, ask about the expected benefits and potential side effects. You may also want to ask how your doctor will know the medication is working.
Usually, the medications can be weaned as the brain recovers. Talk with your medical team if you have any questions about medications to help with alertness and cognition.
What other treatments can be done?
There is limited evidence to support the efficacy of the below interventions at this time. However, these activities are commonly used as a comprehensive rehabilitation program because the risks are low. Discuss with your treatment team prior to trying one of these interventions.
Sensory stimulation is an approach that clinicians will do that may stimulate an unconscious person’s sense of hearing, vision, touch, smell, and taste, to optimize their recovery.
- Coma Stimulation Suggested Activities (PDF) From Headway
A person with DoC ability to be aroused may be inconsistent.
It is important that your loved not get too much stimulation at one time, so it is important to take rest breaks to decrease stimulation. Your nurses, doctors and therapists will guide you in best ways to do this. Below are some general guidelines to be aware of:
What experimental treatments are available?
Repetitive Transcranial Magnetic Stimulation (rTMS)
- rTMS is approved for treatment of depression. This is a non-invasive form of brain stimulation. An electromagnetic coil is placed on the head to stimulate an area of the brain.
Deep Brain Stimulation (DBS)
- DBS is approved for treatment of Parkinson’s disease and other movement disorders. Small studies of individuals with DoC have shown improved alertness with DBS. DBS is invasive because surgery is required to implant electrodes that directly stimulate the brain.
- HBOT has been used for treatment of multiple conditions but use in brain injury is still being studied. Patients are placed in a room or chamber with oxygen at 1.5 to 3 times higher than normal air pressure.
Disclaimer: The interventions listed are only available in research studies, and the information provided is for informational purposes only. Though you may see people in the community that provide these treatments for out-of-pocket costs, these interventions are not approved for clinical treatment in persons with DoC. Evidence for benefit of these treatments is lacking, and there is a potential risk of harm with these interventions. The information provided is for informational purposes only. Speak with your loved one’s physician before pursuing these interventions.
Where Can I Find Information About Current Clinical Trials?
There are clinical trials that are going on around the country that your loved one may be able to participate in. These are clinical trials for research that are trying to see if a particular treatment will work or not. Go to ClinicalTrials.gov and use the following terms to search:
- Status: “Recruiting and not yet recruiting studies”
- Condition or disease: “Disorder of Consciousness”
- Other terms: “Brain injury”