The case for early intervention and rehabilitation
Robert is currently in a critical care facility which is not in a position to determine his awareness or accurate neurological condition.
The facilities put forward as interim placements until the National Rehabilitation Hospital can take him (some time around December 2012/January 2013) are Care of the Aged Facilities because Robert is over 65 – just.
These facilities do not provide Slow Stream Rehabilitation (see below).
In a dedicated neurologically-centred facility, the first order of business would be to review his medication. When Robert was unavoidably off Keppra (seizure medication) and Baclofen (muscle relaxant) he was undeniably more aware. However, he was not assessed by a neurologist during this time and was back on his medication within five days.
The risks of Robert not getting an accurate assessment of awareness are:
- Complications are likely to develop while waiting for NRH placement: pressure sores, contractures, poor posture, depression (if he’s aware and, as he’s crying it would seem he is), and withdrawal
- Early involvement in his treatment may improve his life expectancy
Derick Wade, Professor in Neurological Rehabilitation, Oxford Centre for Enablement, has told us:
Your husband sustained his hypoxic brain injury on 4 October 2011, and almost all natural recovery will have been completed within three months and certainly by six months. Thus there is no realistic reason to expect any difference in his level of responsiveness or readiness between now, and some unspecified time in the future but possibly nine months away. Any neurologist would know that change after three or six months will not occur.
The SMART assessment is not an assessment that one either passes or fails. It is an assessment of the level of awareness and responsiveness, and the result will be the same if done now or in nine months time or at any other time in future. The only thing that is likely to change responsiveness is an alteration in his drugs, with a reduction of all drugs that sedate. An alteration in the environment towards a slightly more stimulating and less medical environment might make a small difference
The major benefit from having an assessment sooner rather than later is that if there is any scope for intervening to improve his quality of life, then that intervention will occur sooner rather than later. I do not know the standard of the Dublin centre, but a potential minor benefit is that we may or may not have greater expertise and/or more potential to intervene.
In your situation I would want to know sooner rather than later, because each day of uncertainty is stressful.
Slow Stream, Slow Track or Low Tolerance Long Duration (LTLD) Rehabilitation is available in the UK, Australia, and Canada (where it’s called LTLD).
(Most of the rehab notes refer to patients who have suffered stroke)
Quoted in the book The Catastrophe of Coma by E.A. Freeman MB, BS, FRCS (Ed.), Dr. A. Bricolo, Journal of Neurosurgery (J. Neurosurgery, 52: 625-634, 1980) [on outcomes for 135 patients in coma for two weeks caused by brain injury] “… it makes it mandatory to continue rehabilitation relentlessly in all cases”, and “what makes the final balance sheet so dismaying is… the high incidence of outcomes implying severe disablement and making the survivors totally dependent on others and capable of suffering and grief. We are prepared to admit that this may be due also or even prevalently to the inadequacy of rehabilitation therapy.”
Glenside Manor in Salisbury (http://bit.ly/K8fsjX) told me:
We can undertake SMART as soon as a patient is with us – there is no waiting list for this. Obviously I’m talking about Glenside Hospital, which is not part of the NHS in the UK. We receive patients from various PCTs (Primary Care Trusts) and often that is for SMART.
We have all sorts of assessments that would be undertaken which would include hand-over from notes but also more practical assessments especially those done by our AHPs which include physiotherapy, occupational therapy, speech and language therapy, psychology and cognitive rehab therapy.
We would do an initial assessment which would involve a lot of notes trawling but also time talking with you and Robert and the professionals that know him best. The SMART is an active process of identifying responses with patients still in PTA, VS and MCS. It is a mini-therapy in itself and stimulates a person giving them an opportunity to respond, so in other words the SMART is a whole process not just an assessment, and obviously a patient’s treatment is led by this process.
Unfortunately it is unpredictable as to how a specific patient will respond, how fast they will rehabilitate and to what achievement level but we do give every opportunity for our patients to progress.
The Frenchay Hospital in Bristol said:
The earlier one starts a SMART assessment the sooner we can establish responses to sensory stimuli and identify what level of awareness the individual has. Based on this information we can formulate a plan. A complex postural seating assessment is also undertaken as positioning is vital to optimise comfort.
The assessment needs to be quite long to ensure a comprehensive assessment. The assessment procedures are universal.
Glenside has a small unit for minimally conscious patients, Initially all patients are admitted to an acute area and then are moved to the most appropriate area of the unit based on a pathway approach to care. At BIRU we would continue to provide therapy interventions whilst undertaking a SMART assessment.
Thompson House Hospital (http://bit.ly/J8HSxL) in Lisburn, Northern Ireland, provide the following:
Slow Track Rehabilitation Unit ~ Unit for severely brain injured and minimally responsive patients offering a range of specialised care and slow track rehabilitation for up to 7 patients who have acquired a severe brain injury. The aim of this multi-disciplinary service is to maximise functional ability and independence. We provide a purpose designed stimulating supportive environment for this service.