“I Want to Live, Until I don't Want to Live Anymore”: Involving Children With Life-Threatening and Life-Shortening Illnesses in Decision Making About Care and Treatment
Abstract
Pediatric societies in North America and in the United Kingdom and Europe take the position that children should be part of the decision-making process. Less clear, however, is how that should be accomplished. This article outlines what needs to be considered when taking on the challenge of involving children with life-threatening and life-limiting illnesses in decision making regarding care and treatment and suggests an approach to involving children that recognizes their abilities, vulnerabilities, and relationships with others while at the same time ensuring an ethical and meaningful role for children.
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Competence in children is thought to be related to life experience: children who have personal experiences with illness may show greater insight and understanding than children of comparable age who lack this experience.
“Apart from cognitive abilities, competence in children is thought to be related to life experience: children who have personal experiences with illness may show greater insight and understanding than children of comparable age who lack this experience [11, 18, 19].”
From Why is it hard to make progress in assessing children's decision-making competence? (2015) · cites this paper as [18]
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Why is it hard to make progress in assessing children's decision-making competence?
Hein, I. M., Troost, P. W., Broersma, A., de Vries, M. C., Daams, J. G., & Lindauer, R. J. L. (2015) · BMC Medical Ethics · doi:10.1186/1472-6939-16-1 · Cited by 191 · see citing works
“Considering that children’s personal experiences with illness might enhance their competence to consent [11,18,19,21], there is good reason to assess the duration of the illness and the experience of the child with the healthcare system.”
Background
- Authors
- Bluebond-Langner, M., Belasco, J. B., & DeMesquita Wander, M.
- Affiliations
- Children's Hospital of Philadelphia (US)
- ORCID
- Belasco, Jean Bello
- Venue
- Nursing Clinics of North America
- Publisher
- Elsevier BV
- Published
- 2010-09
- Volume
- 45
- Issue
- 3
- Pages
- 329-343
- ISSN
- 0029-6465 (ISSN-L)
- OpenAlex
- W2032774236
- Cited by
- 102
- References
- 68
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 3 · 2023: 9 · 2022: 14 · 2021: 14 · 2020: 1 · 2019: 6 · 2018: 13 · 2017: 8 · 2016: 10 · 2015: 6 · 2014: 4 · 2013: 3 · 2012: 4
- FWCI
- 2.03
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Nursing Clinics of North America (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Social Sciences › Sociology and Political Science › Children's Rights and Participation
- Keywords
- pediatric decision-making, children with life-threatening illness, life-limiting illness, pediatric ethics, family involvement in care decisions
- MeSH terms
- Adolescent, Child, Child Development, Cystic Fibrosis, Decision Making, Female, Humans, Male, Neoplasms, Palliative Care, Parent-Child Relations, Patient Participation, Physician-Patient Relations, Truth Disclosure, Patient Selection
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