Sending children home on tracheostomy dependent ventilation: pitfalls and outcomes.(Personal Practice)

In spite of the consistency of the primary discharge coordinator in our practice and attempts to streamline the process, the obstacles to discharge highlighted five years ago remain frustratingly similar. The children in this survey spent an average of 9.6 months extra time in hospital awaiting discharge at considerable cost to the local commissioning teams, quite apart from the emotional cost to the child and stress for the whole family. We hope in future years this review will enable health practitioners and local health providers to anticipate the hurdles, address the problems early, and expedite the process of discharging home children who are dependent on long term ventilation via tracheostomy.

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Arch Dis Child 2004;89:251-255. doi: 10.1136/adc.2003.028316

Advances in neonatal and paediatric intensive care have reduced mortality, but have introduced a new morbidity: a growing number of children who are medically stable but require 24 hour ventilatory support. (1) (2) However, life in hospital is an unsuitable environment for the developing child and an inappropriate use of resources. (3) In 1998 guidelines produced by the UK Working Party on Paediatric Long Term Ventilation (LTV) (4) suggested that with appropriate support and careful planning, long term ventilation for children in the home was feasible. Due to the nature of the work involved, the responsibility for transitioning a ventilated child from hospital to home not uncommonly falls into the hands of neonatologists, paediatric intensivists, and respiratory paediatricians in tertiary centres. However once home, the responsibility rests with general paediatricians, nurses, and allied health professionals attached to district general hospitals (DGH).

In 1999, a cross sectional survey on 141 children from paediatric respiratory consultants and intensivists from around the United Kingdom, (2) reported that 24% were ventilated via a tracheostomy, and 68% were cared for at home. The report predicted that only 4% would remain institutionalised. The survey highlighted specific obstacles to discharge; failure to recruit qualified nursing staff or trained carers; delay in obtaining funding; and unsuitable housing. We know of no reports in the United Kingdom on the long term outcomes for this group of children.

We describe our experience over the past seven years of coordinating the discharge home of 39 children from Great Ormond Street Hospital (GOSH) on tracheostomy dependent ventilation. We examine outcomes for this specific group of children, and discuss issues relevant to the wide variety of health professionals who are involved in the complexities of discharging a child home on tracheostomy dependent ventilation.

METHODS

Since 1994, the GOSH sleep service has identified 146 children requiring long term ventilatory support. The majority of these children were ventilated by non-invasive mask interface. These children require simple care packages and have been reviewed recently. (5) For this article we reviewed the details of 39 children who, at the time discharge planning was initiated, were the most technology dependent: children dependent on ventilation via tracheostomy who cannot survive for more than 24 hours without ventilatory support. Following multidisciplinary assessment (including ethical considerations and parental views), all were considered suitable for home ventilation, and all but four were discharged from GOSH between January 1995 and November 2002. The key discharge coordinator was a social worker (MO). The funding responsibilities for the 39 children were under the jurisdiction of 23 health authorities or more recently Primary Care Trusts (PCT). No more than four children were supported by any one funding agency, and the majority of the Trusts (12/23) were only responsible for funding one child.

At the time of the survey, six of the 39 children were in hospital. The details of these six children are included in keeping with the inherently fluid nature of the discharge process: one child has remained in hospital for over four years, and is included to illustrate that not all children get home; another child, successfully discharged home, was readmitted following a change in medical and home …