Refusal of treatment and disagreement over care

Overview & Definition

A mother refuses the blood transfusion her bleeding six-year-old needs after surgery, because her faith forbids it. The team is certain the child will die without it. That is a refusal of treatment, and it is one of the hardest tests of professionalism and ethics in paediatrics. [4] [5]

A parental refusal is a decision by those with parental responsibility to decline care the treating team recommends. Parents ordinarily hold authority over their child's medical care, and most refusals are reasonable, reversible or negotiable. The clinician's difficulty arises when the refusal risks serious harm to the child, because the duty to protect the child now sits against respect for the family's decision-making authority. [1] [2]

This territory holds three overlapping problems, and naming which one you are in changes what you do. A parental refusal turns on whether the refusal meets the threshold for overriding it. A goals-of-care or futility dispute is a disagreement about the aims or limits of treatment, often in intensive care, and the work is a goals conversation rather than a single decision. An adolescent refusal turns on the young person's own competence, weighted to the gravity of the consequences. [3] [12]

This page owns the ethics, law and process of refusal and disagreement. Cross-link the dedicated leaves for consent and parental responsibility, shared decision-making and assent, confidentiality with adolescents, conflict and difficult encounters, breaking bad news, best-interests decisions and treatment limitation, and trauma-informed care. Do not rebuild their content here. [1] [6]

References14Show ledgerHide ledger

1. [1]Diekema DS Parental refusals of medical treatment: the harm principle as threshold for state intervention Theor Med Bioeth, 2004.PMID 15637945
2. [2]Diekema DS Revisiting the best interest standard: uses and misuses J Clin Ethics, 2011.PMID 21837884
3. [3]Pope TM The best interest standard: both guide and limit to medical decision making on behalf of incapacitated patients J Clin Ethics, 2011.PMID 21837885
4. [4]Conti A Blood Transfusion in Children: The Refusal of Jehovah's Witness Parents' Open Med (Wars), 2018.PMID 29666843
5. [5]Wheeler R Children of Jehovah's witnesses: a review of judicial responses to the refusal of blood transfusion Arch Dis Child, 2026.PMID 41443962
6. [6]Schneiderman LJ Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial JAMA, 2003.PMID 12952998
7. [7]Lantos JD Ethical Problems in Decision Making in the Neonatal ICU N Engl J Med, 2018.PMID 30403936
8. [8]Diekema DS Physician Dismissal of Families Who Refuse Vaccination: An Ethical Assessment J Law Med Ethics, 2015.PMID 26479574
9. [9]Opel DJ Achieving an Optimal Childhood Vaccine Policy JAMA Pediatr, 2017.PMID 28672396
10. [10]Morrison W Pediatricians' Experience with Clinical Ethics Consultation: A National Survey J Pediatr, 2015.PMID 26210945
11. [11]Kunz SN A quality of life quandary: a framework for navigating parental refusal of treatment for co-morbidities in infants with underlying medical conditions J Clin Ethics, 2015.PMID 25794289
12. [12]Diekema DS Adolescent Brain Development and Medical Decision-making Pediatrics, 2020.PMID 32737228
13. [13]Slonina MI State v. Physicians et al.: legal standards guiding the mature minor doctrine and the bioethical judgment of pediatricians in life-sustaining medical treatment Health Matrix Clevel, 2007.PMID 17849820
14. [14]Madrigal VN Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness J Palliat Med, 2022.PMID 34516933