Critical Situations in Children, Adolescents and Young Adults with Terminal Cancer within the Home Setting

Abstract

Background: Over the course of terminal cancer towards the end-of-life, children may experience symptoms that lead to distressing critical situations (CS) for the child and caregivers.

Methods: We analysed the records of 133 children cared for by our paediatric palliative care team (PPCT) from 01/98–12/09. A CS was defined as deterioration of a condition caused by a symptom, which was life-threatening or acutely scaring the patient (pt) or caregivers.

Results: The majority of pts who died sustained no CS. In 38 (28.6%) pts 45 CS occurred. These accumulated towards the end-of-life (62.2% within the last week). About two-thirds were anticipated. There was no clustering of CS during the night/weekend. Leading symptoms were neurological. In 4 CS a pre-hospital emergency physician was alerted. 5 pts were readmitted to hospital. Most CS (88.9%) could be controlled in the home setting.

Discussion: Despite anticipation, a relevant number of pts developed CS, which needed either additional medical intervention or other support by the PPCT. Considering the distressing and suffering character of status epilepticus and dyspnoea, it is important to thoroughly address these conditions in palliative care.

Conclusion: Advanced planning, close contact, good communication, detailed parental information, and a 24-h on-call service can reduce CS in children with terminal cancer. CS are mainly manageable within the home setting. Treatment of CS should focus on the child’s symptoms and wishes, and the needs of the whole family.

Zusammenfassung

Hintergrund: Im Verlauf einer terminalen Krebserkrankung können Kinder Symptome entwickeln, die zu leidvollen kritischen Situationen (KS) für sie selbst und ihre Angehörigen führen.

Methoden: Die Akten von 133 Kindern, die das Kinderpalliativteam zwischen 01/98–12/09 versorgt hat, wurden analysiert. Eine KS wurde definiert als Verschlechterung des Zustands durch ein schwerwiegendes Symptom, das lebensbedrohlich oder den Patienten (Pt) oder seine Angehörigen akut ängstigend war.

Ergebnisse: Die Mehrheit der Pt verstarb ohne das Auftreten einer KS. Bei 38 (28,6%) Pt traten 45 KS auf. Diese akkumulierten zum Lebensende (62,2% innerhalb der letzten Lebenswoche). Etwa zwei Drittel waren vorbereitet. Es zeigte sich keine Anhäufung während der Nacht/am Wochenende. Führend waren neurologische Symptome. In 4 Situationen wurde ein Notarzt gerufen, 5 Pt wurden vorübergehend wieder aufgenommen. Die meisten KS (88,9%) konnten im Rahmen der häuslichen Versorgung kontrolliert werden.

Diskussion: Trotz Vorbereitung entwickelte eine relevante Anzahl an Patienten KS, die entweder zusätzliche medizinische Interventionen oder andere Unterstützung durch das Kinderpalliativteam erforderlich machten. Berücksichtigt man den quälenden Charakter von Atemnot und Krampfanfällen, ist es wichtig, diese Probleme sorgfältig im Rahmen der Palliativversorgung zu adressieren.

Schlussfolgerung: Gute Vorbereitung und Kommunikation, enger Kontakt, detaillierte Information der Eltern und eine 24-h-Rufbereitschaft kann das Auftreten KS bei Kindern mit terminaler Krebserkrankung reduzieren. KS sind im häuslichen Setting größtenteils zu bewältigen. Die Behandlung KS sollte sich auf die Symptome und Wünsche der Kinder sowie die Bedürfnisse der gesamten Familie fokussieren.

Key words

palliative care - children - critical situations - home setting - emergency situations

Schlüsselwörter

Palliativversorgung - Kinder - kritische Situationen - häusliche Versorgung - Notfallsituationen

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