Improving a PDOC patient’s quality of life in a complex care setting can help facilitate accurate monitoring by a multidisciplinary team (MDT) and aid the detection of consciousness. Through sensory regulation, innovative use of supportive aids such as sleep systems, and careful management of the patient’s environment, quality of life for PDOC patients can be enhanced.
In this article we discuss how this improvement and importantly, greater sensory stability, enables increased interactions between the MDT and patient, and facilitates more detailed and insightful assessment of consciousness.
Prolonged Disorders of Consciousness (PDOC) describes a disorder of consciousness that has lasted for at least four weeks post injury, with the patient having progressed through the stages of an acute coma state, but is still under investigation. Patients with PDOC are defined in the Royal College of Physicians publication Prolonged Disorders Of Consciousness Following Sudden Onset Brain Injury: National Clinical Guidelines (2020), as either being in a Vegetative state (VS) or a Minimally Conscious State (MCS).
However, rather than view PDOC as a set of two distinct categories – VS, wakefulness with absent awareness, and MCS, wakefulness with minimal awareness (RCOP, 2020), the guidelines also advise that PDOC should be viewed as a spectrum of awareness. A patient’s position on this spectrum will change over time, fluctuating in between VS and MCS, blurring the boundaries between the two.
A patient’s awareness of themselves, the environment and their potential for improvement is individual, and whilst some may remain in PDOC ongoing, some patients have the potential for recovery (particularly in the early months following the trauma), and with the appropriate level of rehab and support can have a more meaningful quality of life.
PDOC patients require ongoing specialist care, in a dedicated clinical setting, in order to monitor and correctly assess levels of consciousness so that emergence can be assessed for. Fluctuation of consciousness often results in misdiagnosis of these states, missing opportunities for interaction, unless the MDT providing patient care is specialised in PDOC and has understanding and experience of the many sensory and motor impairments that may impact consciousness following a traumatic brain injury.
PDOC within a specialist care setting
Emergence from VS or MCS, where possible for a patient, is a gradual process so before moving into a specialist care setting with a dedicated PDOC MDT, the patient will have spent a significant period of time in hospital. Most likely the patient’s journey will have started within an acute setting, immediately following the traumatic brain injury, and then onto a neuro ward before being transferred to an appropriate long-term care service.
Throughout this journey the overall medical stability of the patient may also fluctuate presenting new challenges for PDOC diagnosis. Each individual typically has numerous complex care needs as a result of the traumatic injury. Patients are sometimes at risk of being misdiagnosed due to these underlying impairments which can mask awareness.
Accurate diagnosis depends on repeated assessments by a specialist team and for a variety of different reasons, e.g. staffing levels, funding, multiple and changing demands on staff time, communal ward spaces catering for patients with very different needs, these assessments are more difficult to perform in a general healthcare setting.
The Bridge Care Centre, a specialised rehabilitation and care service in the heart of Middlesbrough, is one of the leading rehab services in the region for PDOC patients.
The Bridge works in close partnership with NHS James Cook University Hospital and Walkergate Park Centre for Neurorehabilitation and Neuropsychiatry, an encompassing service for people with a disability caused by injury or disease affecting the brain, spinal cord or muscles.
The Bridge’s MDT works closely with each patient to create the optimal environment for recovery, and to increase opportunities for interaction and engagement to aid assessment. With a focus on supporting the quality of life for each individual, nurses, occupational therapists (OTs), dieticians, speech and language therapists (SLTs) physiotherapists and psychologists work together to perform clinical observations and assessments of behaviours and interaction that may suggest awareness of self and the environment.
The MDT also looks to reduce conditions that can develop alongside PDOC, such as increased muscle tone from being immobile which causes spasticity, maintaining skin integrity, and avoiding chest infections, from immobility or aspiration that can be life threatening.
Pauline Matthews is Lead Occupational Therapist at The Bridge Care Centre and specialises in complex neurological assessment of cognition, response to sensory stimuli, visual field loss and deficits related to an individual’s ability to function in everyday life. As an OT Pauline creates individualised bespoke intervention plans in order to try to maximise independence where able and maintain/maximise quality of life.
As Pauline explains, when PDOC care is managed by a team of specialist clinicians, patients are more likely to have an accurate assessment and will receive more appropriate care.
She says: “Working as part of an MDT is vital for PDOC care. Assessment of consciousness is ongoing and depends on a number of factors, which change over time. This is why obtaining an accurate diagnosis can be challenging, but it is so important for care planning and clinical decision-making.
Patients can sometimes be assessed too early within a hospital setting and before they are medically stable. You need to remember that this individual has sustained a traumatic brain injury that can be described as catastrophic and that can cause many other issues in the brain, motor and nervous systems which inhibit their interaction. But that doesn’t necessarily mean that they are not conscious.”
“Within a specialist care setting we are able to put a longer term assessment programme in place, which our whole team can feed into. We draw upon each clinician’s expertise in assessing consciousness and its relationship with communication, cognition and motor function.
This collaborative approach leads to much better outcomes for each individual. For example we know that responses from patients can be inconsistent or delayed, and of course, the patient can fatigue easily. So, as a team we can take that into account and get a much wider view of patient response, over a whole day or set period of time. It is not rushed, we can review our observations and make sure they are as consistent as they can possibly be, so we can avoid things like premature or inappropriate treatment withdrawal.”
Creating optimal opportunities for assessment and recovery
A key part of The Bridge’s complex care provision is to support PDOC patients by proving a structured timetable to prevent over stimulation, carry out standardised observations and assessments of levels of consciousness following local and national guidelines. One of the assessment challenges particular to PDOC is that it can be difficult to distinguish whether behaviours are deliberate and signals of conscious awareness, or whether they are random. Responses can be inconsistent and there can be fluctuation in arousal with individuals prone to fatigue.
Kirsty Allison is an Occupational Therapist at The Bridge and specialises in neurology and stroke assessment and rehabilitation. She has 10 years specialist experience of working in neurology as an occupational therapist and has additional training and specialist knowledge in postural support, including specialist seating and sleep systems. She has worked with patients in various levels of consciousness allowing the development of a high level of skill in sensory therapy.
Kirsty says that when quality of life of a patient is prioritised and the care team are mindful not to over or under stimulate the individual, then assessment results are much more stable and are a clearer indication of levels of wakefulness.
Kirsty says: “If we want to give a PDOC patient the best chance of responding to instructions and making some degree of recovery, then we cannot overlook things that affect their quality of life. For example, regulation of their living environment and how that impacts their sensory experience. Patients that are over-stimulated by noise, light, smell and visual distractions may feel overwhelmed and will not respond to interactions with their care team. In the same way, if they are under stimulated we’re not providing them with the best opportunity for engagement.”
“It’s about finding the right balance and that also applies to their physical bodies – appropriate positioning can increase alertness and improve responses. Sometimes when patients join us at the Bridge they’ve been lying down and immobile for an extended period of time.
One of the first things we look at as an OT is their positioning and whether, with the appropriate bed or chairs, we can change and improve their positioning. Provision of chairs can also help allow the resident access family visits, appointments and group sensory therapy. We look at implementing these changes gradually and at the right time for each individual rather than at a time decided by our team.”
Using sleep systems
One important consideration made by the team at The Bridge is improving the sleep experience for individuals, both in improving the regulation of their sleeping routine and their physical positioning during sleep. Using sleep systems to prevent muscle contracture and deformity is essential to establish the correct baseline from which to begin introducing appropriate sensory therapy to try to illicit responses from the patient.
Kirsty says: “Provision of sleep systems is especially important as it can also improve chest health, decrease pain levels and help manage muscle tone issues. As well as preventing additional future positional problems – such as increasing tone, shortening of the muscles and contracture.
We also can be involved in identifying the need for medical intervention for assisting the sleep wake cycle – such as use of melatonin. And correct positioning can also help with the administration of PEG feeds and reduce the risk of aspiration.”
Involving the family in PDOC care
PDOC patients have limited communication so it is important to involve the patient’s family or next of kin within the individual’s care as much as possible. Families can provide important insights into the beliefs, personality and ultimately, the wishes of the patient. This information can hold significant influence over important decisions that may need to be made about an individual’s care.
However, this can be quite challenging for the family. Not only have the family experienced the shock of a loved one enduring a catastrophic brain injury, and the many life changes that the event creates, but they now play a key role in clinical decision-making regarding their loved one’s care.
As Kirsty describes they may find the situation overwhelming, experience difficulty assimilating the information, so will need their own form of support to manage.
Kirsty says: “In line with national guidelines we try to involve families as much as possible. I normally start the assessment process by contacting the family to discuss the assessment and intervention process and give my details as a point of contact.
I try to gain as much information on the resident’s previous functioning and likes and dislikes as possible as this can be incorporated into their therapy and assessments – such as using their favourite scents or music. We then keep family up to date with how their relatives are doing during regular phone calls and MDT meetings.
Prior to the pandemic we would also have family present during assessments of levels of consciousness. If appropriate would have family members conduct the assessments to see if this would elicit a different response – sometimes a familiar voice will get a greater reaction. This can also help alleviate some of the stress on families by increasing their involvement.”
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