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‘Giving choice to families on a difficult journey’
Despite extensive technological advances and improved survival in paediatric intensive care unit (PICU) patients, many families are faced with a redirection in the aims of treatment to a journey of palliation. This transition in care from cure to palliation is difficult (and sometimes unimaginable) for the families involved, and it is also challenging for professionals, technically and emotionally. There are no ‘second chances’ in end-of-life care. The experience and memories of that journey will remain with the relatives forever. There is increasing objective evidence of the importance of parental choice during the end-of-life care of their child, and this is no less so in the choices surrounding place of death.1 Laddie et al 2 describe their experience of withdrawal of mechanical ventilation outside the PICU, with a view to providing guidance for professionals who may be involved in such terminal care. In the report, dividing the process into five phases provides a practical framework, and the importance of experience and training is highlighted at all stages.
End of life is unpredictable, and withdrawal of mechanical ventilation outside the PIC means that the team embarking on this redirection-in-care will be working in an unfamiliar environment. Although the local palliative care team is familiar with the surroundings, it may be less familiar with the process of endotracheal tube extubation. Early liaison with the local team should be undertaken. Families must never be promised an option at the end of life that is not guaranteed to be available. Many other teams are often involved, including the team transporting the child from the PICU. Preplanning and thorough briefing for teams as well as the families is therefore vital. It is essential to cover information about the most likely process and the possible outcomes. I urge readers to refer to the ‘Together for Short Lives’ website (http://www.togetherforshortlives.org.uk) for a wealth of documentation surrounding palliative care. In particular, a document A Care Pathway to Support Extubation within Children's Palliative Care Framework.3
The information provided to the family needs to be detailed, clear and realistic. Families need to understand that the transfer out of hospital is a one-way journey, with the aims of treatment redirected to palliation, and with a time course that can be unpredictable. In my experience, some children may survive and continue to live for a significant period with a good quality of life, and this outcome needs to be discussed in advance of transfer, however unlikely. The unpredictable nature of withdrawal of mechanical ventilation means that it is useful to discuss the process with the family as a series of ‘what if?’ scenarios and their outcomes. If end-of-life care is to occur at home, an advanced visit by a member of the team is invaluable since it may avoid unforeseen problems such as access to the property. The timing of withdrawal of mechanical ventilation also needs to be considered. For example, in a child who is expected to breathe spontaneously after endotracheal tube extubation, it is prudent to plan extubation soon after arrival at the chosen destination, thereby minimising the child's discomfort. In other circumstances, one may delay endotracheal tube extubation in order to give the family more time in their new environment, especially if this is unfamiliar to them—as in transfer to a hospice. In this setting, there will be other questions that need to be answered: who will perform the endotracheal tube extubation, and will the PICU team remain with their equipment until this procedure is carried out? Our local practice for patients transferred from the PICU to the hospice for end-of-life care is, determine the needs of family and child; to give them the time that they need and to provide the support that they need until they are ready. We have our own mechanical ventilator at the hospice, and I have a dual appointment as consultant in intensive care and in palliative care.
Palliative care after redirection of aims in management
Having made the decision with the family to transfer their child to a hospice or home for end-of-life care, there are certain practicalities in the subsequent management that I have found helpful to follow, that is, de-intensification of monitoring, symptom control, and adherence to accepted clinical and professional guidelines.3
The first step after transfer from the PICU is to create an environment for the family that is not an intensive care unit, but more like home. Monitoring probes, sensors and electrical leads should be removed, which can be difficult for the families—especially those who have spent a long time with ‘beeps’ and ‘alarms’. As ever, prior explanation is essential, and I always allow preparatory period of privacy for the family and relatives, while the professional team retire to an adjoining room. Second, after removal of the endotracheal tube and mechanical ventilation, a number of potential symptoms may occur and these should be predicted and managed. This period can be prolonged, so it is important that each team member understands their role. These symptoms range from the need for adequate sedation and analgesia for distress and anxiety, through to nebulised adrenaline for stridor. Planned prior use of steroids to minimise stridor can be invaluable.
Aims of care and end-of-life support
Empowering a family to have control over where and when their child dies is a vitally important aspect in end-of-life care. This can be provided with good teamwork from well-prepared and trained individuals working together in what will ultimately be tragic circumstances. There are no second chances for the family or medical practitioners. Simulation training has proved to be a useful adjunct to theoretical training, and is an underutilised resource. There are established courses for community and hospice nurses to be trained in verification of death. This avoids calling upon out-of-hours general practitioners who the family may not know, and who may themselves be inexperienced and unfamiliar with end-of-life care in the hospice or at home. Again, preparation and communication with the family general practitioner should avoid any confusion. The article by Laddie et al 2 highlights the importance of knowing the cause of death and whose responsibility it will be to complete the documentation. An inability to state a cause of death does not prohibit withdrawal of mechanical ventilation outside the PICU if that is the wish of the family. However, the case should be discussed with the local coroner before discussion with the family, so that their expectations of what can be accomplished are realistic. The forthcoming introduction of the role of the medical examiner in the UK will provide an opportunity to clarify this area of practice.4 ,5 Additionally, the family should be aware that death outside the PICU does not preclude either limited organ donation or hospital autopsy but, as ever, prior planning is essential.
After the child has died, the family may have certain wishes or faith rituals.6 They may just need time. In a hospice, there are often dedicated bereavement suites where the body can remain until burial or cremation. Sometimes, these facilities can be used by the family; even if death occurs at home, but if not, similar arrangements can be made using cold plates and portable air conditioners. Adequate bereavement follow-up should be prearranged; it is again useful for this to be carried out at the place of the family's choosing involving any teams that may have been involved in the child's terminal care. Counselling services can be invaluable at all points in this journey for the family.
Guidelines and the future of out-of-hospital paediatric terminal care
It would appear that palliative care is embarking on a journey in its own right, not dissimilar from any relatively new subspecialty in medicine. This journey must encompass training, education and research. In respect of the latter, collaboration within the speciality and between specialities is required so that the evidence-base is available to all. The importance of involving families and children in research, where possible, should not be forgotten.
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.