Disorders of consciousness can be both confusing and overwhelming. Patients with a DOC require extensive care, yet the chance of recovery depends largely on the initial injury and natural healing process more so than specific treatment. If you have a loved one suffering from a disorder of consciousness, what do you need to know?
Disorders of consciousness are when a patient’s wakefulness and/or awareness is impaired. A person can recover from a DOC, but this recovery is achieved through supportive rather than curative treatment. An OT can help the caretakers and family of the patient develop a care and support plan.
Disorders of consciousness leave a patient unable to make decisions for themselves. The loved ones and family members of someone suffering from a disorder of consciousness need to be well informed to make the best decisions for the well-being and recovery of the patient. Keep reading to start learning all you need to know about disorders of consciousness.
What is a Disorder of Consciousness?
A disorder of consciousness is, as the name suggests when a person can no longer enter a fully conscious state. Consciousness is defined as the presence of two aspects: wakefulness and awareness.
- Wakefulness: Wakefulness is when a person’s eyes are open, and they possess some motor movement. For a patient to possess wakefulness, they only need to possess basic reflexes to qualify as having motor movement. Such reflexes would include things such as swallowing or coughing.
- Awareness: Awareness is harder to define and test for than wakefulness. Awareness is the ability to have complex thoughts. It is the ability to perceive yourself and your environment. It has also been defined as the ability to have an experience.
When a person is unable to achieve full levels of wakefulness and awareness, they have a disorder of consciousness.
Disorders of Consciousness: Causes
In general disorders of consciousness are caused by brain injuries. Specifically, there are three types of injuries that can result in a disorder of consciousness.
- Traumatic Brain Injury: A traumatic brain injury is the result of an external force damaging the brain. Simply put, a traumatic brain injury occurs when you get hit in the head really hard. Car accidents and falls are common causes of traumatic brain injury.
- Non-Traumatic Brain Injury: A non-traumatic brain injury is due to an internal problem that damages the brain. This could be due to an event such as a stroke, something causing inflammation in the brain, damage caused by toxins, or other conditions.
- Progressive Brain Damage: Progressive brain damage is the result of the brain degenerating over time. Unlike with traumatic and non-traumatic brain injuries, the onset of a disorder of consciousness with this type of brain damage is gradual rather than sudden. Examples of this type of brain damage include Alzheimer’s and Parkinson’s.
Disorders of consciousness do not always occur with these types of brain injuries. It depends on what area of the brain is damaged. The area of the brain that affects consciousness must be damaged to create a disorder of consciousness.
What is a Disorder of Consciousness Not?
While this distinction seems unnecessary it helps in understanding why some things that may look like disorders of consciousness are not. Damage to other areas of the brain, such as the brain stem, can cause complete paralysis, known as locked-in syndrome.
When a person has locked-in syndrome, they are unable to move or speak, which can have the appearance of a disorder of consciousness. However, a person in a locked-in state still possesses complete awareness. They are simply unable to express themselves due to paralysis.
A person who has locked-in syndrome requires different treatment than someone with a disorder of consciousness, which is why the distinction is so important.
Diagnosing Disorders of Consciousness
Because there is no treatment to cure a permanent disorder of consciousness, diagnosing one is a serious affair. Before diagnosing a vegetative state or minimally conscious state, a doctor must be sure that it is not a problem that can be solved through treatment.
Causes of Disorders of Consciousness that Can Be Treated
Some things can cause a temporary disorder of consciousness. These are illness that can put a patient into a coma, but which can be treated. These include but are not limited to…
- A diabetic coma
- Drugs or medication
- A brain tumor
A disorder of consciousness that is caused by one of the above can be treated because the cause is treatable. Disorders of consciousness that are caused by permanent brain damage may heal naturally but cannot be cured through treatment.
Ways to Test for a Disorder of Consciousness
There are several tests that a doctor will perform to be sure that a patient does have a disorder of consciousness.
The Glasgow Coma scale is one test that can be used to discern the level of consciousness. This test checks eye-opening, verbal responses, and motor responses. The lower a patient’s score the more severe the disorder of consciousness.
Brain scans are often performed on people displaying decreased levels of awareness. This will help to determine if the condition is due to a treatable cause.
Diagnosing a Prolonged Disorder of Consciousness is a Long Process
Remember that a disorder of consciousness is a serious diagnosis. Your loved one should never be declared to be in a permanent vegetative state or minimally conscious state without extensive testing.
A permanent vegetative state indicates that there is no cure. The doctor must determine that there is absolutely no treatable cause before declaring a prolonged disorder of consciousness.
Do not assume immediately after a loved one enters a state of unconsciousness that the condition will be permanent or will cause irreversible brain damage. Diagnosing a prolonged disorder of consciousness is a long process.
Types of Disorders of Consciousness
There are three conditions that are defined as disorders of consciousness. They each represent progressing levels of wakefulness and awareness.
A coma is the most severe disorder of consciousness. A person in a coma shows no signs of being either aware or awake. They have their eyes closed and are completely unresponsive. Some people in a coma even require a machine to assist them in breathing.
Comas usually last for a few weeks. When someone comes out of a coma, they may either wake up completely or progress into a less severe disorder of consciousness. Some may recover completely from a coma, while others will suffer from permanent brain damage even after they wake.
The next progression in terms of severity in disorders of consciousness is a vegetative state. At this point a person’s eyes are open, and they have basic reflexes. They have achieved wakefulness, but their awareness is still completely gone.
As we have already said, awareness can be harder to judge than wakefulness. A person in a vegetative state has wakefulness but not awareness. Signs of a vegetative state can include eyes not following an object, not being able to answer yes or no questions, and spontaneous or seemingly random movement.
Those in a vegetative state do not display emotions or voluntary actions. A person in a vegetative state can perform actions, but these actions are not in response to their surroundings but are spontaneous and often inappropriate to the situation. They may be awake, but they are unable to interact with others or their environment.
A person can gradually progress out of a vegetative state to higher levels of consciousness. However, there is the possibility that a vegetative state may become permanent.
Minimally Conscious State
A minimally conscious state is the final disorder of consciousness. A coma is the absence of both wakefulness and awareness. A vegetative state is wakefulness with the absence of any awareness. A minimally conscious state is wakefulness with impaired awareness.
A person in a minimally conscious state can respond appropriately to questions or commands somewhat. However, their moments of clarity are often brief. Their awareness can be discerned, but it is inconsistent.
Much like a vegetative state, a minimally conscious state can be a step on the road to recovery or it can be the last stop. Whether a person progress through all the disorders of consciousness to become fully conscious again or whether they stop at one of the levels depends on the type and severity of the brain injury.
Is Recovery from a Disorder of Consciousness Possible?
While comas, vegetative states, and minimally conscious states can be extremely frightening to witness in a loved one, there is a possibility that a patient can make a full recovery back to consciousness.
Please know that recovering to a conscious state does not imply that a person has completely recovered from their brain injury. It simply means that they have recovered their consciousness, but other brain damage is likely to persist. Confusion and restricted cognition may still be an issue.
Disorders of consciousness refer to someone unaware of their surroundings. You can be aware of your surroundings and still be unable to function within them as you once did. Please know that even if your loved one progresses to full consciousness, the recovery from their injury is likely not complete.
What Does Recovery from a Disorder of Consciousness Look Like?
There are two types of recovery from a disorder of consciousness: waking up from a coma and gradual progression.
Waking up from a Coma
Waking up from a coma is the portrayal of recovery you have often seen on television. A person suffers some sort of brain injury, remains unconscious for several weeks, and then wakes up completely recovered.
While it is possible to wake up from a coma directly into a conscious state, instead of progressing through the vegetative and minimally conscious state, this return to consciousness is more gradual than television implies.
A person waking from a coma is likely to experience confusion at first. The waking up process often takes time rather than being a sudden event where the person opens their eyes and understand everything that has happened.
Besides waking up from a coma and returning to a state of consciousness, a person may also gradually progress through the three disorders of consciousness. They would start in a coma, enter a vegetative state, then progress to a minimally conscious state, and end with their consciousness regained.
The above is the ideal scenario. Unfortunately, recovery may be stalled or completely halted at any one of the three stages, and as we have already noted, even a return to full consciousness does not mean that the brain injury will have no permanent effects.
Timeline of Recovery from a Disorder of Consciousness
There is a general timeline that health professionals use to predict the likelihood of emerging out of a disorder of consciousness. This timeline determines when a disorder of consciousness is labeled permanent.
- Coma Timeline: For most people, a coma lasts a few weeks (2 to 4 to be more specific) after which they either wake up gradually or progress to a vegetative state. If a person is in a coma longer than that the chances of them waking up begins to decline.
- Vegetative State Timeline: A vegetative state has different classifications based on how long it lasts. A continuing vegetative state is it lasts for more than 4 weeks. A permanent vegetive state is declared if the situation lasts for longer than 6 months with a non-traumatic injury and longer than 12 months with a traumatic injury.
- Minimally Conscious State Timeline: Just like with a vegetative state, a minimally conscious state is considered to be continuing after 4 weeks. However, declaring a minimally conscious state permanent is much more difficult. The situation has to last for several years before it is declared to be permanent.
These timelines are general guidelines. Each case is unique. People have been known to regain consciousness long after the average timeline suggests it should be possible.
Can You Predict If Someone Will Recover from a Disorder of Consciousness?
Remember that disorders of consciousness do not exist in isolation. They are caused by something else, a brain injury. The initial injury that caused the disorder of consciousness is the best indicator of the likelihood of recovery. The age of the person also has an impact.
Although there are some indicators, there is no way to predict whether someone in an unconscious state will return to consciousness. The longer the state continues the less likely it becomes and the more likely that the brain will have suffered great damage if they eventually do awake.
After a year in a coma or vegetative state, the decision to withdraw nutritional support may have to be considered by the medical team and brought to the attention of the family. In many places, this decision has to be approved by a court.
Recovery from Disorders of Consciousness Caused by Progressive Brain Damage
Everything we have said thus far concerning recovery describes disorders of consciousness caused by both traumatic and non-traumatic brain injuries. Disorders of consciousness caused by progressive brain damage are a different situation.
There are two main categories of consciousness disorders: prolonged disorders of consciousness and terminal decline of consciousness. Prolonged disorders of consciousness have a sudden onset due to an injury (traumatic or non-traumatic). The terminal decline of consciousness sees a person gradually enter a state of unconsciousness due to an illness.
Progressive brain damage, which is caused by an illness such as Alzheimer’s and Parkinson’s, more often causes a terminal decline of consciousness rather than prolonged disorders of consciousness. The damage these illnesses cause is irreversible and causes a person to slowly descend into unconsciousness.
Recovery from the terminal decline of consciousness is not possible. Disorders of consciousness that fall into this category happen at the end of a person’s life and are due to a larger illness. They are the result of permanent and extensive brain damage that cannot be reversed.
While a person in a prolonged disorder of consciousness may live for many years even in their unconscious state, a person is in terminal decline of consciousness will likely only live a couple of years at the most because the unconscious state is the result of a degenerative illness.
Treatment for Disorders of Consciousness
As we have said, it is impossible to predict whether someone will recover consciousness. There is no treatment that can induce a person back into consciousness. Recovery from a disorder of consciousness must occur naturally.
Treatment is thus about supporting and caring for the unconscious person in the hopes that they will regain consciousness naturally. This support involves caring for the person’s needs and providing stimulation that may help to trigger the brain.
Caring for the Person’s Body
A person in an unconscious state can not take care of their own physical needs. While they may be able to breathe and control their heartbeat on their own, their nutrition and hygiene will have to be monitored and maintained by others.
Besides ensuring a nutrition supply through a feeding tube and a waste disposal system, there are other physical needs for which a person in an unconscious state requires care. Their teeth and mouth need to be cleaned, joints need to be moved to keep them from going stiff, and their body needs to be moved periodically to prevent sores.
It is thus vital that a person suffering from a disorder of consciousness has a care team to meet their physical needs while they are unable to take care of themselves. The unconscious person must heal naturally to recover their consciousness, and thus, preventing any other health issues from arising while their brain tries to heal is essential.
Supplying Sensory Stimulation
For a person in a vegetative state or minimally conscious state providing sensory stimulation may help to increase responsiveness. Sensory stimulation involves providing some sort of stimulus to activate the major senses.
Such stimulation could involve spraying perfume, listening to music, showing pictures of family members, and even holding their hand. This treatment is usually carried out by medical professionals, but the family can participate as well.
Treatment for Terminal Decline of Consciousness
Even though recovery from a terminal decline of consciousness is not possible, every effort should be made to keep the person as comfortable as possible.
Terminal decline of consciousness is a gradual degeneration. The person will still maintain some levels of awareness for a while even as they decline. Their physical needs and sensory stimulation are still important even as they become unresponsive.
Although it may seem strange, it is important to continue interaction with a person suffering from a disorder of consciousness. Even people in a coma have been known to remember hearing things later.
A lack of awareness is partially characterized by being unable to interact. If you want a person to regain the ability to interact, that person needs to be interacted with by others.
A person in an unconscious state should still be given the opportunity for activities. It can be difficult to judge just how aware a person with a disorder of consciousness is. Their unawareness should never be taken for granted. Family members should still talk with them, and they should be given chances to watch television or listen to music.
Can an Occupational Therapist Help with Disorders of Consciousness?
Caring for someone with a disorder of consciousness requires an entire team of medical professionals and advisors. However, the occupational therapist is someone in particular who should be consulted in developing a care plan for the patient.
What is an Occupational Therapist?
An occupational therapist helps people with pain, illnesses, or disabilities discover a way to live their lives. This can involve helping a patient regain lost skills or aiding them in learning to function with a permanent disability.
An occupational therapist usually makes house or work calls to assess the difficulties faced in a person’s everyday life. They may either suggest modifications to the person’s environment or come up with a plan for helping the patient to overcome obstacles.
What Can an Occupational Therapist Do for Someone with a Disorder of Consciousness?
If occupational therapists help people learn to function, why should they be consulted for a patient with a disorder of consciousness? After all, they cannot exactly work with the patient, and we have already said no treatment cures disorders of consciousness.
While an occupational therapist cannot cure disorders of consciousness, their experience in making living space evaluations and developing assistance plans for people with disabilities will prove invaluable in creating a care plan for someone with a disorder of consciousness.
Caring for someone with a disorder of consciousness is a massive task. It is often too easy to forget the necessary aspects of care. An occupational therapist can make an evaluation and offer suggestions to make the support a person with a disorder of consciousness needs both manageable and of excellent quality.
Check out this case study for an example of how an occupational therapist can help ensure the safety and comfort of a person in a minimally conscious state. The improvements described here not only help the patient but also make things easier for both her care staff and family.
Occupational Therapists and Sensory Stimulation
Besides helping develop a plan for the overall care and health of the patient, occupational therapists can also devise techniques for providing sensory stimulation.
In helping people learn or regain function, occupational therapists must be familiar with how the brain recognizes sensations and performs actions. With their understanding of neural connections, an occupational therapist can create an effective sensory stimulus program.
Why an Occupational Therapist?
So an occupational therapist can help, but are they necessary? In most cases, an occupational therapist is a necessary member of the care team for a person with a disorder of consciousness.
Very few people have experience dealing closely with someone with a disorder of consciousness before they are called upon to do so. Family members, care staff, and even some doctors may be unfamiliar with how best to care for someone in an unconscious state.
Occupation therapists are trained to evaluate and make suggestions for the care and daily life of disabled individuals. They can advise family members and care staff on the bests ways to safely and effectively interact with the unconscious individual.
Disorders of consciousness are devastating, serious, and hard to predict. In such an uncertain situation, do not underestimate the value of someone who can help you devise a care plan for your loved one.
In addition, if your loved one does regain consciousness, then an occupational therapist will be needed to assist them with additional recovery. Having an occupational therapist you are already familiar with their case on hand can help make recovery all the smoother.
Disorders of consciousness are always devastating, especially for those who are close to the patient. Recovery is possible but not certain and difficult to predict. An occupational therapist can give some clarity during an uncertain situation.
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