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Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
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2013 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, no 7, 744-748 p.Article in journal (Refereed) Published
Abstract [en]

Aim To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life. Methods A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied. Results Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life. Conclusion The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.

Place, publisher, year, edition, pages
2013. Vol. 102, no 7, 744-748 p.
Keyword [en]
Children with cancer, End-of-life, Paediatric oncology, Palliative care
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-203516DOI: 10.1111/apa.12242ISI: 000319741800029OAI: oai:DiVA.org:uu-203516DiVA: diva2:637264
Available from: 2013-07-17 Created: 2013-07-15 Last updated: 2017-12-06Bibliographically approved
In thesis
1. Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
Open this publication in new window or tab >>Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care.

Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII).

The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.

 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2015. 73 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1123
Keyword
palliative care, child, cancer, family, communication, end-of-life care, bereavement
National Category
Pediatrics Cancer and Oncology
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-259409 (URN)978-91-554-9291-5 (ISBN)
Public defence
2015-09-25, A1:111a, BMC, Husargatan 3, Uppsala, 09:00 (English)
Opponent
Supervisors
Available from: 2015-09-04 Created: 2015-08-03 Last updated: 2015-10-01

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Jalmsell, LiHansson, Mats G.Frost, Britt-Marie

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