Home mechanical ventilation

More than 140 000 critically ill patients are admitted to intensive care in England and Wales each year. Delayed weaning (>14 days) and continued dependence on mechanical ventilation occur in 2-5% of these people. The human and financial costs of this dependence are substantial.1 2 3 4 Although most patients are eventually weaned, the rest remain dependent on ventilation, which is provided through a tracheostomy or non-invasively by a mask or cuirasse.3 Such patients require assessment for home ventilation and often need an extensive care package that provides long term medical, nursing, and physiotherapy support.

Home ventilation and weaning units are best placed to coordinate this kind of care, although direct responsibility for the patient may switch to the community at hospital discharge. Such centres can also provide continuing support to patients at home, train carers, assess competency, and provide emergency support at times of crisis.1 In many parts of the United Kingdom, however, such units do not exist, and individual hospitals may have to arrange home care without adequate support for patients or appropriate assessment of the competency of carers. This places patients at risk. The complexity of care needed often results in delayed discharge, and this has an impact on limited critical care resources if such patients remain within the intensive care unit.1 3 4

The risks involved were recently highlighted by the much publicised case of a tetraplegic patient who apparently had his ventilator inadvertently switched off by a carer.5 Such patients are vulnerable not only to the actions of inadequately trained staff but also to acute illness and machine failure.6 Despite this, as yet, there are no agreed models or standards of care. The costs of home care are considerable, perhaps because of associated disability or because total ventilator dependency requires 24 hour vigilance by carers. Limited data are available on the number of patients with chronic respiratory failure treated outside of hospital. The largest study was a survey carried out in 16 European countries.7 Home mechanical ventilation was defined as either non-invasive ventilation or tracheostomy ventilation on a daily basis for more than three months at home or in a long term facility. Patient identification relied on registries, records maintained by national organisations, and personal knowledge of ventilator units. Despite these limitations, more than 21 000 patients were identified, of whom 13% were ventilated via a tracheostomy. Not surprisingly, the organisation and provision of home mechanical ventilation was highly variable around Europe. The survey was performed in 2002 and is probably a considerable underestimate of the current numbers.

It is time for the UK to establish national registries and for variations in care to be recognised by healthcare policy makers. Given the relative rarity of such cases, commissioning of home ventilation services should be the responsibility of national specialist commissioning. Such a model already exists for adults with pulmonary hypertension—the National Specialist Commissioning Advisory Group (NSCAG). This will require input from medical societies such as the British Thoracic Society and the Intensive Care Society and from patient charities such as the British Lung Foundation and the Muscular Dystrophy Campaign. Standards of care need to be established, and the training of professionals and accreditation of weaning and rehabilitation units requires consideration. The German Medical Association of Pneumology and Ventilatory Support recently published guidelines that tackle many of these areas, including the criteria for patient selection.8

Although a national approach is essential to improve outcomes,9 the needs of individual patients vary and are influenced by the underlying disease process. For example, a patient who is tetraplegic and needs home mechanical ventilation might have a relatively stable existence, with a high degree of independence. In contrast, the intensity of home care and ventilation may change rapidly in a patient with rapidly progressive motor neurone disease, and management might even involve readmission to hospital or end of life decisions. Respiratory units that can provide weaning, rehabilitation, and discharge to home mechanical ventilation are therefore crucial for selecting the appropriate package of care for individual patients at a local level.9 10