Controversies in Management: Community care allows patients to reach their full potentialBMJ 1994; 309 doi: https://doi.org/10.1136/bmj.309.6965.1356 (Published 19 November 1994) Cite this as: BMJ 1994;309:1356
Hospital based care currently dominates the management of stroke in Britain. This has been an insidious and unplanned process, and it is concerning that this acute care model may become regarded as the solution to stroke. I do not believe that hospital care should be replaced by community services but that a more appropriate balance needs to be achieved: one which recognises the limitations of hospitals and the pressing community (home) needs of stroke patients and their families.
* This is the tenth in a series of articles examining some of the difficult decisions that arise in medicine
Up to 70% of people who have a stroke are admitted to hospital, where they account for 12% of general medical and 25% of geriatric bed days. However, these widely cited statistics disguise considerable variations between districts, and it has become apparent that most stroke patients do not require hospital admission for medical reasons. Rather, the hospital is used as a form of rapid access sanctuary. It is a refuge for stroke patients who are socially disadvantaged (most commonly those living alone) and provides terminal or palliative care for those most severely affected.1 But while hospitals remain the default service for stroke, progress in community care initiatives will be stifled. Stroke, with its rapid response and complex needs, should be regarded as a key index condition by which the success of community services is judged. The now conclusive demonstration of the effectiveness of stroke units, although a major triumph for international rehabilitation research, may be a further stimulus to distort the play of resources between hospital and community services and further reinforce the view of stroke as a hospital disease. Our rush to establish a stroke unit in each acute trust must be tempered by a larger vision for stroke management: one which embraces the community - that is, the home, as the main focus of service and research activity.
Our understanding of stroke care expanded greatly in the 1980s. Increasingly comprehensive observational studies left no doubt about the daily struggle for people with stroke and their families. These studies, however, have also exposed the inherent weaknesses and limitations of hospital based care. Three interrelated themes have emerged as the stroke research and development challenges for the 1990s. All three themes indicate unequivocally that the community should become the real battleground for stroke care.
Longer term perspective
It is now recognised that stroke rehabilitation requires a longer term perspective: probably at least three to five years after the initial stroke.2 This may not seem a particularly awe inspiring notion, but it does represent a crucially different way of considering stroke care - one that clashes with the contemporary “short termism” of hospital practice. There are obvious parallels with other chronic disease such as rheumatoid arthritis where long term systematic follow up with multiprofessional interventions tailored to the individual have resulted in improved and more consistent outcome.
Blaxter followed the course of patients with a new disability (including stroke) after hospital discharge.3 The practical difficulties, the intense frustrations, and the hardships were plainly laid out. Two decades later, this experience is little changed despite advances in hospital care for stroke.2 Blaxter came to recognise the continuous nature of this struggle and suggested the term “a career in disability” (which we could now redefine as “a career in stroke”) as an appropriate way to capture the lifestyle changes she observed.
Do hospital staff usually consider stroke in these terms? I think not. Hospital staff are entrapped by a short term view with a dominating focus on discharge from hospital as the end point of rehabilitation. Even in stroke units a good start is rapidly dissipated because we hand over the rehabilitation process to a near vacuum of community care.4 The pressing challenge is to develop a community care rehabilitation process based on the proved principles of the stroke unit but which is capable of fulfilling the longer term perspective required by stroke patients and their families.
There is an important distinction between stroke related disability and handicap. Disability is usually readily apparent in stroke - for example, difficulty in standing or walking. But handicap - the manner in which a disability impinges on the particular circumstances of the person - may be less apparent. It is especially opaque in hospital, where there are limited opportunities to discover the handicap dimension since patients are necessarily separated from their home and social context. Hospital staff therefore tend to focus on a standard repertoire of abilities, and patients may not achieve their potential within their home.5 Home delivery of physiotherapy for stroke is more effective, considerably more efficient, and more cost effective than hospital based care.6 This supports the notion that home treatment addresses problems in a way that is more relevant to the patient.
Neglect of psychosocial needs
A special consequence of hospitals' short term outlook is that current rehabilitation programmes overemphasise physical recovery from stroke and do not address adequately the competing needs of education, psychological support, and enhancing social opportunities for patients and families. The dominance of hospital based physical rehabilitation is evidenced in the inverse therapy rule: that patients with the severest strokes and least potential for recovery receive most therapy. Conversely, many patients with good physical recovery remain housebound and socially impoverished, resulting in unnecessary additional burdens for their carers.
Holbrook has described a useful scheme for charting stroke recovery in which patients move from a stage of crisis, through a treatment stage and a realisation stage, to a final stage of adjustment: a stage at which a new validating role is discovered with a return of self esteem and dignity.7 Our current emphasis on hospital based physical rehabilitation leaves too many patients stranded at the treatment stage. I have argued previously for a more comprehensive rehabilitation approach with greater emphasis on psychosocial functioning.8 This might be started in hospital, but its full realisation requires a community orientation.
Hospital based care creates insoluble difficulties in addressing the key patient issues of long term treatment, handicap, and psychosocial functioning. Even in the best hospital centres, with patients carefully selected for the best recovery potential, the outcome in the medium term is poor.9 Few districts currently provide stroke services that respond to the umbrella term “career in stroke disability.” The shortfall is large, and although community rehabilitation is in its infancy, it has the best potential to fill this gap.