Original Article 137
Critical Situations in Children, Adolescents and Young Adults with Terminal Cancer within the Home Setting
Authors
M. Kuhlen, S. Balzer, C. Friedland, A. Borkhardt, G. Janßen
Affiliation
Department of Paediatric Oncology, Haematology and Clinical Immunology, Center for Child and Adolescent Health, Heinrich Heine University, Duesseldorf, Germany
Key words ▶ palliative care ● ▶ children ● ▶ critical situations ● ▶ home setting ● ▶ emergency situations ●
Abstract
Zusammenfassung
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.
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 ent weder 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 Bedürf nisse der gesamten Familie fokussieren.
Schlüsselwörter ▶ Palliativversorgung ● ▶ Kinder ● ▶ kritische Situationen ● ▶ häusliche Versorgung ● ▶ Notfallsituationen ●
Bibliography DOI http://dx.doi.org/ 10.1055/s-0034-1398630 Published online: March 26, 2015 Klin Padiatr 2015; 227: 137–143 © Georg Thieme Verlag KG Stuttgart · New York ISSN 0300-8630 Correspondence Dr. Michaela Kuhlen Department of Paediatric Oncology Haematology and Clinical Immunology Center for Child and Adolescent Health Heinrich Heine University, Duesseldorf Moorenstraße 5 40225 Duesseldorf Germany Tel.: + 49/211/811 8590 Fax: + 49/211/811 6206 [email protected]
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Kuhlen M et al. Critical situations in children … Klin Padiatr 2015; 227: 137–143
Downloaded by: WEST VIRGINIA UNIVERSITY. Copyrighted material.
Kritische Situation bei Kindern, Jugendlichen und jungen Erwachsenen mit terminaler Krebserkrankung im Rahmen der häuslichen Palliativversorgung
Introduction
▼
In Germany, about 400–500 children and adolescents die from cancer every year. Even so a child dying of cancer remains an uncommon event. An important aim in palliative care is to provide comprehensive multi-professional and interdisciplinary treatment to relieve suffering [1]. In addition, palliative management includes prevention of symptom exacerbation and anticipatory planning for foreseeable, potentially distressing clinical problems [30]. As is known from studies, most parents would have preferred to have their child been cared for and die at home [10]. But in contrast to other countries [9], in Germany the majority of children dying of cancer still do so in hospital [25]. The symptoms of children living with life-threatening or lifelimiting diseases substantially differ from those in adults [6, 7, 11, 12, 22], thus requiring child-specific palliative care. But local office-based paediatricians and family doctors are mostly inexperienced in palliative care with limited knowledge in symptom control and communication at the end of life [14, 15]. Additionally they are often concerned about being too much in demand in critical situations (CS). Not surprisingly, studies conducted with adult palliative patients could show that emergencies and rehospitalisations will follow if families feel poorly prepared or left alone in CS [4, 19, 29]. However, paediatric on this topic are not yet available. Specialised paediatric palliative care teams (PPCT) provide end-of-life care in the home setting to enhance care of children and their families with the aim of best possible management of critical situations at home. This study was initiated to determine critical situations with regard to type, frequency, time of onset, anticipation, and implemented measures in a monocentric cohort of children, adolescents and young adults diagnosed with terminal cancer in the context a 24-7 on-call service provided by a paediatric palliative care team (PPCT) in a home setting.
Patients and methods
▼
This study was conducted as a single centre analysis at Children’s University Hospital, Duesseldorf, Germany. Children, adolescents and young adults were included who fulfilled the following criteria: previous anticancer treatment at this institution, diagnosis of incurable, progressive cancer, discharge from hospital, and care by the PPCT in a home setting between January 1998 and December 2009. Patients who died after December 31st 2009 were excluded from this analysis. No other exclusion criterion was defined. The development and characteristics of the PPCT were demonstrated in previous studies [13, 16]. Palliative management comprised informing families of foreseeable clinical problems and anticipatory planning of symptom-guided interventions (“emergency drugs”) such as treatment of pain, nausea and emesis, seizure, agitation, dyspnoea, bleeding, itching, and obstipation. Determined by the individual clinical course, disease-specific interventions were supplemented as necessary. 2 physicians of the PPCT conducted a retrospective chart review. All patient records were assessed by both physicians for demographic data and critical situations (CSs) with respect to anticipation, time of onset, and measures taken. A critical situation was defined as an unscheduled contact to the patient/family with deterioration of the patient’s condition caused by a severe Kuhlen M et al. Critical situations in children … Klin Padiatr 2015; 227: 137–143
symptom, which was life-threatening or acutely scaring the patient and/or family. Exacerbation of pain was excluded from this analysis. In accordance with this definition, evaluated critical situations included status epilepticus, acute unconsciousness, acute paralysis, acute loss of sight, massive agitation, massive haemorrhage, severe dyspnoea, superior vena cava syndrome, and acute urinary retention, as well as treatment refractory, agonising symptoms, emergency calls and readmission to the hospital. Psychological CSs like severe anxiety, depression, or suicidal ideas were not evaluated as these symptoms were not sufficiently documented. Critical situations were defined as expected/anticipated when the distressing symptom or clinical problem had been previously addressed with the patient/parents and measures to alleviate it had already been placed in the caregiver’s hands; all others were defined as unforeseen. Time under investigation was defined as time between the decision for palliative home care and death. The study was approved by the local ethics committee. Data were analysed with SPSS Statistics 21. Patients with or without critical situations were compared using the Fisher’s exact test for categoric variables. 2-tailed p
Critical Situations in Children, Adolescents and Young Adults with Terminal Cancer within the Home Setting
Authors
M. Kuhlen, S. Balzer, C. Friedland, A. Borkhardt, G. Janßen
Affiliation
Department of Paediatric Oncology, Haematology and Clinical Immunology, Center for Child and Adolescent Health, Heinrich Heine University, Duesseldorf, Germany
Key words ▶ palliative care ● ▶ children ● ▶ critical situations ● ▶ home setting ● ▶ emergency situations ●
Abstract
Zusammenfassung
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.
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 ent weder 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 Bedürf nisse der gesamten Familie fokussieren.
Schlüsselwörter ▶ Palliativversorgung ● ▶ Kinder ● ▶ kritische Situationen ● ▶ häusliche Versorgung ● ▶ Notfallsituationen ●
Bibliography DOI http://dx.doi.org/ 10.1055/s-0034-1398630 Published online: March 26, 2015 Klin Padiatr 2015; 227: 137–143 © Georg Thieme Verlag KG Stuttgart · New York ISSN 0300-8630 Correspondence Dr. Michaela Kuhlen Department of Paediatric Oncology Haematology and Clinical Immunology Center for Child and Adolescent Health Heinrich Heine University, Duesseldorf Moorenstraße 5 40225 Duesseldorf Germany Tel.: + 49/211/811 8590 Fax: + 49/211/811 6206 [email protected]
▼
▼
Kuhlen M et al. Critical situations in children … Klin Padiatr 2015; 227: 137–143
Downloaded by: WEST VIRGINIA UNIVERSITY. Copyrighted material.
Kritische Situation bei Kindern, Jugendlichen und jungen Erwachsenen mit terminaler Krebserkrankung im Rahmen der häuslichen Palliativversorgung
Introduction
▼
In Germany, about 400–500 children and adolescents die from cancer every year. Even so a child dying of cancer remains an uncommon event. An important aim in palliative care is to provide comprehensive multi-professional and interdisciplinary treatment to relieve suffering [1]. In addition, palliative management includes prevention of symptom exacerbation and anticipatory planning for foreseeable, potentially distressing clinical problems [30]. As is known from studies, most parents would have preferred to have their child been cared for and die at home [10]. But in contrast to other countries [9], in Germany the majority of children dying of cancer still do so in hospital [25]. The symptoms of children living with life-threatening or lifelimiting diseases substantially differ from those in adults [6, 7, 11, 12, 22], thus requiring child-specific palliative care. But local office-based paediatricians and family doctors are mostly inexperienced in palliative care with limited knowledge in symptom control and communication at the end of life [14, 15]. Additionally they are often concerned about being too much in demand in critical situations (CS). Not surprisingly, studies conducted with adult palliative patients could show that emergencies and rehospitalisations will follow if families feel poorly prepared or left alone in CS [4, 19, 29]. However, paediatric on this topic are not yet available. Specialised paediatric palliative care teams (PPCT) provide end-of-life care in the home setting to enhance care of children and their families with the aim of best possible management of critical situations at home. This study was initiated to determine critical situations with regard to type, frequency, time of onset, anticipation, and implemented measures in a monocentric cohort of children, adolescents and young adults diagnosed with terminal cancer in the context a 24-7 on-call service provided by a paediatric palliative care team (PPCT) in a home setting.
Patients and methods
▼
This study was conducted as a single centre analysis at Children’s University Hospital, Duesseldorf, Germany. Children, adolescents and young adults were included who fulfilled the following criteria: previous anticancer treatment at this institution, diagnosis of incurable, progressive cancer, discharge from hospital, and care by the PPCT in a home setting between January 1998 and December 2009. Patients who died after December 31st 2009 were excluded from this analysis. No other exclusion criterion was defined. The development and characteristics of the PPCT were demonstrated in previous studies [13, 16]. Palliative management comprised informing families of foreseeable clinical problems and anticipatory planning of symptom-guided interventions (“emergency drugs”) such as treatment of pain, nausea and emesis, seizure, agitation, dyspnoea, bleeding, itching, and obstipation. Determined by the individual clinical course, disease-specific interventions were supplemented as necessary. 2 physicians of the PPCT conducted a retrospective chart review. All patient records were assessed by both physicians for demographic data and critical situations (CSs) with respect to anticipation, time of onset, and measures taken. A critical situation was defined as an unscheduled contact to the patient/family with deterioration of the patient’s condition caused by a severe Kuhlen M et al. Critical situations in children … Klin Padiatr 2015; 227: 137–143
symptom, which was life-threatening or acutely scaring the patient and/or family. Exacerbation of pain was excluded from this analysis. In accordance with this definition, evaluated critical situations included status epilepticus, acute unconsciousness, acute paralysis, acute loss of sight, massive agitation, massive haemorrhage, severe dyspnoea, superior vena cava syndrome, and acute urinary retention, as well as treatment refractory, agonising symptoms, emergency calls and readmission to the hospital. Psychological CSs like severe anxiety, depression, or suicidal ideas were not evaluated as these symptoms were not sufficiently documented. Critical situations were defined as expected/anticipated when the distressing symptom or clinical problem had been previously addressed with the patient/parents and measures to alleviate it had already been placed in the caregiver’s hands; all others were defined as unforeseen. Time under investigation was defined as time between the decision for palliative home care and death. The study was approved by the local ethics committee. Data were analysed with SPSS Statistics 21. Patients with or without critical situations were compared using the Fisher’s exact test for categoric variables. 2-tailed p
![[Adolescents and young adults with cancer--analogies and differences to young adults with congenital heart defects].](/assets/img/hold.png)
