End-of-Life Decisions in Pediatric Cancer Patients

Loenhout, Rhiannon B. van; Geest, Ivana M.M. van der; Vrakking, Astrid M.; Heide, Agnes van der; Pieters, Rob; Heuvel‐Eibrink, Marry M. van den

doi:10.1089/jpm.2015.29000.rbvl

Cited by 9 publications

(4 citation statements)

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“…Many parents felt inexperienced and overwhelmed to make complex and difficult EOL decisions in a limited period of time, as was also seen by Hinds et al and Carnevale et al [ 5 , 10 ]. This study adds that parents also made many smaller decisions, whereas PPC research mainly focuses on EOL decisions [ 5 , 7 , 9 , 10 , 41 , 42 ]. While making minor decisions, parents weighed the risks and the aims in daily life because every minor decision could have a major impact on controlling the symptoms and/or disease and the quality of life of their child and family.…”

Section: Discussionmentioning

confidence: 99%

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

et al. 2017

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In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a ‘good parent’, parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands.• Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance.• Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life.• Professionals need insight into the parents’ aims and tasks from the parental perspective to strengthen parents’ resilience. Electronic supplementary materialThe online version of this article (doi:10.1007/s00431-016-2842-3) contains peer-reviewed but unedited supplementary material, which is available to authorised users.

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Section: Discussionmentioning

confidence: 99%

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

et al. 2017

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“…Physicians consider that having less pain and not being in the hospital in the final month improves this quality, while parents find that care is improved when there is clear information regarding end-of-life expectations given in a sensitive manner (Figure 4). In addition, the timing of discussion regarding medical decisions at the end of life is often late and based on a lack of expectation of recovery, unbearable suffering without a chance of cure, parental request, or expected death in the short term (42). Regarding the reasons for not discussing end-of-life decisions directly with the patient, the emotional aspect is not a reason mentioned.…”

Section: Axiological Analysis Of End-of-life Decisions For Children With Cancermentioning

confidence: 99%

Decision-Making at End-of-Life for Children With Cancer: A Systematic Review and Meta-Bioethical Analysis

Juárez-Villegas

Altamirano-Bustamante

Zapata‐Tarrés

2021

Front. Oncol.

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BackgroundEvidence shows that medical education includes a variety of basic and clinical skills. Ethical and human values are not typically considered in medical school curricula, and this is evident in medical practice in certain scenarios such as decision-making at pediatric cancer patients' end of life.MethodsThis study explores a bioethical approach to address complex decision-making at the end of life in children and adolescents with cancer. We are a cross-functional group of scientists from several academic disciplines who conducted a systematic review of the literature using our newly developed meta-bioethical analysis and synthesis of findings. The search was carried out in five databases, resulting in 10 research papers. Following quality screening, seven articles were ultimately selected for further analysis.ResultsOur focus is on the state of the art to better understand the bioethical deliberation at the end of life in pediatric oncology. Here, we report a systematic review that includes (i) classification of the screened articles by the type of decision-making they use, ii) the system values that are at the core of the decision-making at the end of life, and iii) bioethical and ethical discernment queries. We conclude with a discussion regarding the best practices of ethical discernment and decision-making at the end of life.This study highlights the need to develop more research to better understand the influence and origin of these multidimensional factors determining critical decisions that define the quality of life of patients in a highly sensitive moment.ConclusionWe conclude that personal aspects of the physician define their actions more than knowledge or organized structure. It is thus necessary that pediatric oncologists receive ethics and humanistic education.

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“…In addition, neonatologists who work in a NICU may have different attitudes towards end‐of‐life decisions than the paediatric intensivists or paediatric anaesthesiologists who work in a PICU. End‐of‐life decisions can be classified using different systems and have been widely studied in NICUs. However, little is known about the process of end‐of‐life decision‐making for neonates in PICUs.…”

Section: Introductionmentioning

confidence: 99%

Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

2017

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AimWe compared neonatal deaths and end‐of‐life decisions in a neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU) in a Dutch tertiary children's hospital.SubjectsAll 235 full‐term infants who died within 28 days of life between 2003 and 2013 in the NICU (n = 199) and PICU (n = 36) were retrospectively studied.ResultsThe median length of stay was three days in the NICU and seven days in the PICU (p = 0.003). The main reasons for NICU stays were asphyxia (52.8%) and congenital malformations (42.2%), and in the PICU, they were congenital malformations (97.2%) and primarily cardiac problems (83.3%, p < 0.001). The median age of death was three days in the NICU and eight days in the PICU (p < 0.001), and mortality despite full intensive care treatment was 4.0% and 25.0%, respectively. Intensive treatment was discontinued because of poor survival chances in 25.1% of NICU and 52.8% of PICU cases (p < 0.001), and care was redirected because of expected poor quality of life in 70.9% and 22.2%, respectively.ConclusionDifferences between the age at death and end‐of‐life decisions were found between full‐term infants in the NICU and PICU in the same children's hospital. Underlying disorders and doctors’ attitudes may have played a role.

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End-of-Life Decisions in Pediatric Cancer Patients

Abstract: In two-thirds of cases, ELDs preceded the death of a child with cancer. This is the first study providing insights into the characteristics of ELDs from a pediatric oncologist's point of view.

Cited by 9 publications

References 34 publications

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

Decision-Making at End-of-Life for Children With Cancer: A Systematic Review and Meta-Bioethical Analysis

Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

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