Occupational Therapy - Patients in a Prolonged Disorder of Consciousness (PDOC)

Aims of admission

During your relative’s admission on the unit, the team will be assessing and establishing a diagnosis in relation to their level of awareness. The team will also establish ways of managing potential complex problems in the longer term to try and maintain dignity, comfort and safety. Overall, our aims are to:

• Assess and monitor how your relative engages with the environment around them
• Assess and optimise if any means of communication or function can be established
• Provide a formal diagnosis in relation to the level of awareness shown by your relative
• Ensure optimal 24 hour postural management
• Ensure optimal management of spasticity
• Assess the potential for tracheostomy weaning and removal (where appropriate)
• Optimise pharmacological intervention (medication)
• Optimise nutrition, hydration and mouth care
• Maintain skin integrity and heal any existing wounds
• Optimise your relative’s sleep/wake cycle
• Establish bladder and bowel routines
• Provide support, information and advice to enable families to make informed choices about their relative’s future
• Optimise medical stability

Meet the team

In order to achieve the above aims, your relative will have input from a range of professionals which will include:

• Neuro-rehabilitation Consultant and medical team
• Nurse and healthcare assistants
• Occupational Therapist
• Physiotherapist
• Neuropsychologist
• Speech and Language Therapist
• Dietician
• Complex discharge team

Points of contact

Consultant:
Ward Manager:
Therapist:
Neuropsychologist:

Settling into the unit

• Medical care on admission - One of our experienced rehabilitation doctors will examine your relative to ensure any current medical problems are being addressed and that medication is being prescribed appropriately
• Programme of treatment - on admission, your relative will have medical, nursing and therapy assessments so the team can get to know your relative and what their needs are. From this, appropriate goals can be set. As soon as your relative is medically and therapeutically optimised, they will go on a waiting list for when formalised assessment of awareness can commence. Due to complex nature of some injuries this can sometimes take weeks to months
• Informal observations of your relative’s responses will be continually monitored and discussed with you, both prior to, during, and after formalised assessments
• Physical management of this patient group is usually complex, and the team will identify an appropriate physical regime to help to keep your relative as comfortable as possible. This will include appropriate seating, positioning programmes for all staff to follow, and appropriate splinting regimes
• If you wish to join a therapy session, please discuss this with your relative’s therapists in advance so that a convenient time can be arranged
• Planning meetings are an opportunity to meet with the team to discuss current needs, therapy interventions and future plans. This will be arranged for few weeks after your relative is admitted to the Neuro Rehab ward, and then following this will be arranged as required

What do we mean by Prolonged Disorders of Consciousness?

Prolonged Disorder of Consciousness can occur as a result of an acquired brain injury (ABI). ‘Acquired Brain injury’ means that brain cells have been damaged. ABI’s can occur due to a wide range of conditions, including trauma, stroke, hypoxia (shortage of oxygen), infection or other neurological disorders.

Unfortunately, when brain cells are damaged, the body cannot replace them. However, some neurological recovery may occur if undamaged brain cells nearby can adapt to take over some of the functions previously performed by the cells that have been lost - we call this ‘neuroplasticity'.

The extent of recovery depends on the proportion of cells that are damaged, and also on where the damage is in the brain. If the damage is diffuse (widespread) the opportunity for neuroplasticity is less than if damage is localised to just one area of the brain. This can, in some cases, lead to individuals experiencing reduced consciousness.

Prolonged Disorder of Consciousness (PDOC) is a term used to describe patients who have very severe brain damage with a complex mixture of physical, cognitive and communicative disabilities.

What are the different states of reduced consciousness?

Coma - absent wakefulness and absent awareness

A state of unrousable unresponsiveness, lasting more than 6 hours in which a person:

• Is unconscious and cannot be awakened
• Fails to respond normally to painful stimuli, light or sound
• Lacks a normal sleep - wake cycle
• Does not initiate voluntary actions

VS (Vegetative State) - wakefulness with absent awareness

A state of wakefulness without awareness in which there is preserved capacity for spontaneous or stimulus-induced arousal – evidenced by:

• Sleep - wake cycles
• Range of reflexive and spontaneous behaviours
• VS is characterised by absence of behavioural evidence for self or environmental awareness

Typical behaviours that may occur that occur in VS

Spontaneous/reflexive movements: The following may occur for no apparent reason.

• Chewing
• Teeth grinding
• Tongue pumping
• Roving eye movements
• Purposeless movements of limbs and/or trunk
• Facial movements – such as smiles or grimaces
• Shedding tears
• Grunting or groaning sounds
• Swallow
• Grasp reflex

Eyes may turn fleetingly to:

• Follow a moving object or towards a loud sound
• Fixate on a target
• React to visual menace

They do not usually follow a moving target for more than a second or two.

MCS (Minimally Conscious State) - wakefulness with minimal awareness

A state of severely altered consciousness in which minimal but clearly discernible behavioural evidence of self or environmental awareness is demonstrated. MCS is characterised by:

• Inconsistent, but reproducible, responses above the level of spontaneous or reflexive behaviour, which indicate some degree of interaction with their surroundings

Behaviours compatible with MCS:

• Following simple commands
• Gestural or verbal ‘yes/no’ responses (regardless of inaccuracy)
• Intelligible verbalisation (accepting inaccuracy due to specific speech or language deficits)
• Purposeful behaviours including movements or emotional responses that clearly occur as a result of environmental stimuli - that are not due to reflexive or spontaneous activity

Patients in a prolonged disorder of consciousness may not fully recover consciousness, depending on the severity of the injury and how well their brain repairs itself over the months and years after the injury. A large majority of patients with these types of severe acquired brain injury will have some level of permanent disability. The multi-disciplinary team will discuss the likely prognosis for recovery once they have had the opportunity to conduct their detailed assessments.

Formalised assessment process

Several structured assessment tools are utilised to explore a patient’s behaviours and level of response to stimuli. The assessments aim to explore responses in variety of domains such as Vision, Auditory, Motor, Oromotor, Communication and Arousal.

Responses may include:

• Following objects with the eyes
• Responding to sounds or voices
• Moving in response to commands
• Attempting to communicate

The assessments tools used may include JFK Coma Recovery Scale, The Wessex Head Injury Matrix (WHIM) and Sensory Modality Assessment and Rehabilitation Techniques (SMART).

Your therapist will be able to provide further information on these or a summary can be found in RCP guidelines, using QR code.

Assessments will often take place over a three to four week period; this will provide opportunity to monitor at varying times of day and to monitor for any small but meaningful changes over time that might not be detected by individual assessments in isolation.

Prognosis and planning for the future

Planning for future care after discharge starts at an early stage because, due to their needs, plans for the future can take time to organise and needs careful consideration. Many patients have significant and long-term disabilities that would require care to be provided in a nursing home. The neurorehabilitation team will help to identify their ongoing care needs and discuss options for longer term care and support when these are known. You will be supported through this process by the MDT and Complex Discharge Co-Ordinators.

Decision making

As your relative/friend is unable to make their own decisions it is important to establish who is best to be involved in decision making on their behalf. The team will need to identify who the most relevant people are for decision making, and as points of contact early in the admission.

If you have a current Lasting Power of Attorney for Health and Welfare, or Finance, it is very important that you share this with the treating team as soon as possible.

Annex 4b of the recognised National Guidelines is a very useful resource and discusses questions such as:

• Who makes decisions about life-sustaining medical treatments?
• The role of family and friends in decision making
• What are best interests?
• What if I disagree with the decision the doctor wants to make?
  See QR code for guidelines

Life sustaining treatment

In some cases, when a person remains in a vegetative or minimally conscious state with little chance of recovery, the treating team and families may discuss whether it is in a person’s best interest to continue or withdraw life sustaining treatments, such as:

• Antibiotics and other medical interventions
• Cardiopulmonary resuscitation (CPR)
• Clinically assisted nutrition and hydration (CANH)

Alternatively, there may also be discussions around ceiling of care, which means agreeing on the level of medical treatment that will be provided if a person’s condition worsens.

The decision to withdraw CANH is never taken lightly. It is based on careful assessments, discussions and legal guidelines, considering:

• Whether the person has shown any signs of improvement
• Their previously expressed wishes (if known)
• The best interests of the person, including quality of life and potential suffering

If the decision is made to withdraw CANH, an external second opinion will also be involved in relation to prognosis and best interest’s process. If CANH is then withdrawn, the person is kept comfortable with palliative care, ensuring they do not experience distress. Families are supported throughout this process.

Getting involved

Families and friends can get involved in the patients care in several ways. You can help by:

• Providing information about the patient’s background history, interests, likes and dislikes, and their beliefs (e.g. religious, cultural, health)
• Being involved in recording observations about the patient and their responses to what they see, hear, touch, and how they communicate with you
• Being involved in treatment activities with help from the therapists
• Helping to create the best environment for the patient e.g. providing a balance between periods of stimulation and rest time (such as turning radio/TV off)
• Helping to provide short periods of stimulation to the senses with guidance from therapy team, for example:

Vision – looking at family photos
Hearing – listening to favourite music, talking to the patient
Touch – holding the patient’s hand, massage, exercises
Smell – using favourite perfume/aftershave

Additional resources

1.    Royal College of Physicians (2020)
Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines

2.    Healthtalk Online Resource
“Family experiences of vegetative and minimally conscious states’
https://healthtalk.org/introduction/family-experiences-vegetative- and-minimally-conscious-states/

3.    The Brain Injury Group
Resources for Individuals and Families - Brain Injury Group https://braininjurygroup.co.uk/resources/

4.    Coma and Disorders of Consciousness Research Centre
This site includes sample letters for families who want to request a best interest meeting.
https://cdoc.org.uk