Prognostic indicators for children and young people at the end of life: A Delphi study.

BACKGROUND: Recognizing transitions in end of life care for children is difficult and hinders communication and care planning. AIM: To identify the signs and symptoms that are most useful in signalling which children may have end of life care needs. METHODS: A Delphi study was undertaken with palliative care professionals who rated the extent to which 75 symptoms alerted them that a child/young person may have moved into his or her last (a) weeks/days, (b) 6-12 months of life using a 7-point response scale. Level of support for items was indicated by the median, and consensus was shown by the mean absolute deviation from the median. The impact of the Delphi on final agreement and consensus was also assessed. RESULTS: Second-round questionnaires were completed by 49 (89%) individuals. It was easier to identify prognostic items in the last weeks/days than earlier in the end of life trajectory. Items most indicative included failure of physiological systems, deteriorating level of consciousness, loss of autonomic control (e.g. breathing and peripheral circulation), together with a feeling of the professional that life is ending and an agreement that resuscitation would be futile. Items most indicative of last 6/12 months suggest a progressive decline in disease trajectory, increased chest infections or other complications from which the child has difficulty in making a full recovery and which may require high dependency or critical care. CONCLUSION: This study provides important insight into which signs and symptoms are considered most valuable in identifying children approaching the end of the life.

Sexuality: the neglected component in palliative care.

Although sexuality is an integral part of holistic care, it appears to be an area that is seldom fully addressed or is even neglected entirely. The main reason appears to be nurses' discomfort with the issue of sexuality and a lack of nurse education in this area. This article advocates an eclectic model of care drawing on the work of several theorists. The ultimate aim is to look at the relevance and place of sexuality in the palliative care setting. A scenario identifies issues relating to sexuality in which this model was utilised.