Welcome home: a family-centred US model for prolonged disorders of consciousness

The American Congress of Rehabilitation Medicine annual conference, being held virtually this year, featured a presentation by a renowned centre in Atlanta with a progressive approach to prolonged disorders of consciousness (PDOC) care.

Their number one goal is to get the patient home, supported by family members who have been specially trained to deal with every aspect of caring for their loved one. Their model has had a 67% success rate of discharging PDOC patients home in the last six years.

During the residential inpatient phase, the family will be taught how to provide round-the-clock care, to manage equipment and to provide a suitable discharge environment including adaptions to the family home. Clinicians, nurses and therapists show what life is like living with PDOC and what is required to look after every aspect of a patient’s care.

Training starts with simple tasks, such as understanding the importance of environmental controls, building to more hands-on tasks such as postural management and turning, gradually increasing in complexity to deal with issues such as feeding and airway management. There is a simulated Transitional Living Apartment within the residential facility so that the family member can practice and get used to the care routine. This can also identify any knowledge gaps and build competencies. By the conclusion of the inpatient phase, the family will be competent in all aspects of activities of daily living.

This upskilling is done in conjunction with a Case Manager to oversee paperwork, guardianship issues and any at-home therapies that need to be arranged. The Case Manager will ensure that the local primary care physician has sufficient experience of PDOC management to assist the family. There will always be a need for Case Management to provide ongoing support, safeguarding and medical coordination in such cases.

This is very much a maintenance programme for those in long-term PDOC, however carers are trained in SMART-equivalent objective monitoring and recording of reaction to stimuli and behaviours to detect any signs of emergence. 

Applicability in the UK

We recognise that, in a majority of UK cases where compensation funding is available, family members will prefer not to become carers for all sorts of practical and psychological reasons. However, there may be scenarios where funding is unavailable or is insufficient, for example because liability is denied or cannot be determined for a long while because of ongoing criminal investigations, or where liability is highly likely to be ‘split’ and a claimant therefore suffers a partial compensation shortfall that might not be fully mitigated by statutory funding. In such exceptional cases, the US model of family-centred care offers possibilities for discharge home, if the residential placement is sub-optimal for practical reasons such as long travelling distances or perceived shortcomings in care.

We are not yet aware of any equivalent UK rehabilitation centre offering this same model. However, the Clinical Lead and/or Case Manager could certainly re-create elements of this model, particularly a trial period in a transitional living facility to ensure competence and familiarity with PDOC care needs, and working with the patient’s local GP for medical risk management. It will also be possible to provide similar health education, including psychological preparedness. By doing so, the parties to a claim may succeed in overcoming financial barriers and restoring a claimant to the pre-accident position of living at home with their family.