Download PDF
Semin Neurol 2018; 38(05): 533-538
DOI: 10.1055/s-0038-1668078
Review Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Involving Minors in Medical Decision Making: Understanding Ethical Issues in Assent and Refusal of Care by Minors

Abigail Lang
1   Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
,
Erin Talati Paquette
1   Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
› Author Affiliations
Further Information

Publication History

Publication Date:
15 October 2018 (online)

    Permissions and Reprints

Abstract

When caring for minors, the clinician–patient relationship becomes more ethically complex by the inclusion of parents in the clinician–parent–patient triad. As they age, children become more capable of participating in the decision-making process. This involvement may lead them to either accept or refuse proposed care, both of which are ethically acceptable positions when the minor's capacity to participate in decision making is carefully considered in the context of their age, development, and overall health. Certain conditions may be more likely to impact their capacity for participation, but it is important for clinicians to avoid categorical presumption that minors of a certain age or with certain conditions are incapable of participating in decisions regarding their care. Understanding the ethical bases for decision making in pediatric patients and considerations for the involvement of minors who both assent to and refuse proposed treatment will equip clinicians to respect the growing autonomy of minor patients.

Keywords

assent - informed consent - pediatrics - treatment refusal - capacity
 

  • References

  • 1 Brown RH, Hodes HL, Vaughan VC. , et al. Consent. Pediatrics 1976; 57 (03) 414-416
    PubMedGoogle Scholar
  • 2 Informed Consent, Parental Permission, and Assent in Pediatric Practice. Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics 1995; 95 (02) 314-317
    PubMedGoogle Scholar
  • 3 Katz AL, Webb SA. ; Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016; 138 (02) e20161485
    CrossrefPubMedGoogle Scholar
  • 4 Consent for Emergency Medical Services for Children and Adolescents. Consent for emergency medical services for children and adolescents. Pediatrics 2011; 128 (02) 427-433
    CrossrefPubMedGoogle Scholar
  • 5 Coleman DL, Rosoff PM. The legal authority of mature minors to consent to general medical treatment. Pediatrics 2013; 131 (04) 786-793
    CrossrefPubMedGoogle Scholar
  • 6 Ross LF, Swota AH. The best interest standard: same name but different roles in pediatric bioethics and child rights frameworks. Perspect Biol Med 2017; 60 (02) 186-197
    CrossrefPubMedGoogle Scholar
  • 7 Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004; 25 (04) 243-264
    CrossrefPubMedGoogle Scholar
  • 8 De Lourdes Levy M, Larcher V, Kurz R. ; Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP); Statement of the Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP). Informed consent/assent in children. Eur J Pediatr 2003; 162 (09) 629-633
    CrossrefPubMedGoogle Scholar
  • 9 Zawistowski CA, Frader JE. Ethical problems in pediatric critical care: consent. Crit Care Med 2003; 31 (5, Suppl): S407-S410
    CrossrefPubMedGoogle Scholar
  • 10 Bernat JL. Informed consent in pediatric neurology. Semin Pediatr Neurol 2002; 9 (01) 10-18
    CrossrefPubMedGoogle Scholar
  • 11 Reynolds S, Grant-Kels JM, Bercovitch L. How issues of autonomy and consent differ between children and adults: kids are not just little people. Clin Dermatol 2017; 35 (06) 601-605
    CrossrefPubMedGoogle Scholar
  • 12 Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Dev 1982; 53 (06) 1589-1598
    CrossrefPubMedGoogle Scholar
  • 13 Pretzlaff RK. Should age be a deciding factor in ethical decision-making?. Health Care Anal 2005; 13 (02) 119-128
    CrossrefPubMedGoogle Scholar
  • 14 Alderson P. Competent children? Minors' consent to health care treatment and research. Soc Sci Med 2007; 65 (11) 2272-2283
    CrossrefPubMedGoogle Scholar
  • 15 Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR. Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 2006; 118 (02) 723-730
    CrossrefPubMedGoogle Scholar
  • 16 Miller VA, Drotar D, Kodish E. Children's competence for assent and consent: a review of empirical findings. Ethics Behav 2004; 14 (03) 255-295
    CrossrefPubMedGoogle Scholar
  • 17 Moore L, Kirk S. A literature review of children's and young people's participation in decisions relating to health care. J Clin Nurs 2010; 19 (15-16): 2215-2225
    CrossrefPubMedGoogle Scholar
  • 18 Schalkers I, Parsons CS, Bunders JFG, Dedding C. Health professionals' perspectives on children's and young people's participation in health care: a qualitative multihospital study. J Clin Nurs 2016; 25 (7-8): 1035-1044
    CrossrefPubMedGoogle Scholar
  • 19 Unguru Y, Coppes MJ, Kamani N. Rethinking pediatric assent: from requirement to ideal. Pediatr Clin North Am 2008; 55 (01) 211-222 , xii
    CrossrefPubMedGoogle Scholar
  • 20 Ruhe KM, Wangmo T, Badarau DO, Elger BS, Niggli F. Decision-making capacity of children and adolescents--suggestions for advancing the concept's implementation in pediatric healthcare. Eur J Pediatr 2015; 174 (06) 775-782
    CrossrefPubMedGoogle Scholar
  • 21 Spike JP. Informed Consent Is the Essence of Capacity Assessment. J Law Med Ethics 2017; 45 (01) 95-105
    CrossrefPubMedGoogle Scholar
  • 22 van Staden WC. Acceptance and insight: incapacity to give informed consent. Curr Opin Psychiatry 2009; 22 (06) 554-558
    CrossrefPubMedGoogle Scholar
  • 23 Talati ED, Lang CW, Ross LF. Reactions of pediatricians to refusals of medical treatment for minors. J Adolesc Health 2010; 47 (02) 126-132
    CrossrefPubMedGoogle Scholar
  • 24 Johnston C. Overriding competent medical treatment refusal by adolescents: when “no” means “no”. Arch Dis Child 2009; 94 (07) 487-491
    CrossrefPubMedGoogle Scholar
  • 25 Duncan RE, Sawyer SM. Respecting adolescents' autonomy (as long as they make the right choice). J Adolesc Health 2010; 47 (02) 113-114
    CrossrefPubMedGoogle Scholar
  • 26 Sisk BA, DuBois J, Kodish E, Wolfe J, Feudtner C. Navigating decisional discord: the pediatrician's role when child and parents disagree. Pediatrics 2017; 139 (06) e20170234
    CrossrefPubMedGoogle Scholar
  • 27 Weise KL, Okun AL, Carter BS, Christian CW. ; COMMITTEE ON BIOETHICS; SECTION ON HOSPICE AND PALLIATIVE MEDICINE; COMMITTEE ON CHILD ABUSE AND NEGLECT. Guidance on forgoing life-sustaining medical treatment. Pediatrics 2017; 140 (03) e20171905
    CrossrefPubMedGoogle Scholar
  • 28 Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Cent Rep 1997; 27 (06) 29-40
    PubMedGoogle Scholar
  • 29 Traugott I, Alpers A. In their own hands: adolescents' refusals of medical treatment. Arch Pediatr Adolesc Med 1997; 151 (09) 922-927
    CrossrefPubMedGoogle Scholar
  • 30 Tate T, Goldberg A, Wightman A, Warady BA, Lantos JD. Controversy about dialysis for an adolescent. Pediatrics 2017; 140 (01) e20170327
    CrossrefPubMedGoogle Scholar
  • 31 Ross LF. Against the tide: arguments against respecting a minor's refusal of efficacious life-saving treatment. Camb Q Healthc Ethics 2009; 18 (03) 302-315 , discussion 315–322
    CrossrefPubMedGoogle Scholar
  • 32 Diekema DS. Adolescent refusal of lifesaving treatment: are we asking the right questions?. Adolesc Med State Art Rev 2011; 22 (02) 213-228 , viii
    PubMedGoogle Scholar
  • 33 Talati E. An open door to ending exploitation: accountability for violations of informed consent under the Alien Tort Statute. Univ Pa Law Rev 2006; 155: 231-278
    CrossrefPubMedGoogle Scholar
  • 34 Belcher v Charleston Area Med Ctr, 422 SE 2d 827, 838 (W Va 1992). 1992
    PubMed
  • 35 In re E.G. 1989;133 I11. 2d 98, 549 N.E.2d 322
    PubMed
  • 36 Skeels J. In re E.G.: The right of mature minors in Illinois to refuse lifesaving medical treatment. Loyola Univ Chicago Law J 1990; 21 (04) 1199-1230
    PubMedGoogle Scholar
  • 37 Will JF. My God my choice: the mature minor doctrine and adolescent refusal of life-saving or sustaining medical treatment based upon religious beliefs. J Contemp Health Law Policy 2006; 22 (02) 233-300
    PubMedGoogle Scholar
  • 38 Mercurio MR. An adolescent's refusal of medical treatment: implications of the Abraham Cherrix case. Pediatrics 2007; 120 (06) 1357-1358
    CrossrefPubMedGoogle Scholar
  • 39 IN RE CASSANDRA C.* (SC 19426). 2015
    PubMed
  • 40 Harris EA. Connecticut teenager with cancer loses court fight to refuse chemotherapy. The New York Times; 2015
    PubMedGoogle Scholar
  • 41 In the Matter of the Welfare of the Child of Colleen Hauser and Anthony Hauser, JV-09–68, Brown County, MN; 5th Judicial District; 2009
    PubMed
  • 42 Timms N, Lowes L. Autonomy or non-compliance in adolescent diabetes?. Br J Nurs 1999; 8 (12) 794-797 , 800
    CrossrefPubMedGoogle Scholar
  • 43 Fitzgerald D. Non-compliance in adolescents with chronic lung disease: causative factors and practical approach. Paediatr Respir Rev 2001; 2 (03) 260-267
    PubMedGoogle Scholar
  • 44 Dobbels F, Van Damme-Lombaert R, Vanhaecke J, De Geest S. Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatr Transplant 2005; 9 (03) 381-390
    CrossrefPubMedGoogle Scholar