Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

Hongo, Teruaki; Watanabe, Chieko; Okada, Shuichi; Inoue, Noriko; Yajima, Shugo; Fujii, Yasuhisa; Ohzeki, Takehiko

doi:10.1046/j.1442-200x.2003.01668.x

Cited by 74 publications

(43 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Moreover, it could be that these children are not able to articulate pain given the impaired cognitive, developmental and communication skills associated with such LLCs. Furthermore, much of the previous research was carried out in children with cancer, [12][13][14][15][16][17][18][19][20] in which pain is more likely. Other studies of a similar population 2,21 also give physical symptoms a lower priority.…”

Section: Discussionmentioning

confidence: 99%

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

et al. 2011

View full text Add to dashboard Cite

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n=43) and families (n=16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals' rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.

show abstract

Section: Discussionmentioning

confidence: 99%

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

et al. 2011

View full text Add to dashboard Cite

show abstract

“…About 80% of patients experience dyspnea at the end of their life, and about 45% of patients with a terminal illness report that they suffer from dyspnea [93]. According to parental report, approximately 65% of their children were treated for dyspnea, and in less than 20% treatment was rated as successful.…”

Section: End-stage Diseasementioning

confidence: 99%

Pulmonary Dysfunction in Pediatric Oncology Patients

Meyer

Reinhard²,

Gottschling

et al. 2004

Pediatric Hematology and Oncology

View full text Add to dashboard Cite

Children suffering from cancer may experience short episodes of respiratory distress and/or chronic impairment in pulmonary function. Pulmonary dysfunction may be primarily disease-related, but it may also result secondarily from treatment. Emergencies with critical respiratory dysfunction in childhood cancer include mechanical obstruction of vital anatomical structures and hyperleukocytosis syndrome. This paper focuses on the most relevant causes of respiratory distress and lung injury in pediatric oncology patients and bone marrow transplant patients. Infectious causes, lung disease resulting from anti-neoplastic agents, and bone marrow transplant-related pulmonary dysfunction are emphasized. A review of the literature pertinent to this subject is given.

show abstract

“…End-of-life research is also a priority because 89% of children and adolescents die while experiencing 2 to 8 troubling symptoms and are described by their surviving parents as having suffered "a great deal" (Hongo et al, 2003;Wolfe et al, 2000a). With improved symptom control, these children and adolescents could die with less suffering because troubling symptoms could be anticipated, prevented, or diminished.…”

mentioning

confidence: 99%

End-of-Life Research as a Priority for Pediatric Oncology

Hinds

Pritchard

Harper

2004

J Pediatr Oncol Nurs

View full text Add to dashboard Cite

Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors.

show abstract

Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

Abstract: Using the data obtained in the present study, we describe situations faced in the terminal care of children. It is important to address the problems revealed by this analysis in order to achieve improvements in both the physical and psychological care of children with terminal cancer.

Cited by 74 publications

References 19 publications

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

Pulmonary Dysfunction in Pediatric Oncology Patients

End-of-Life Research as a Priority for Pediatric Oncology

Contact Info

Product

Resources

About