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

Abigail Lang; Erin Talati Paquette

doi:10.1055/s-0038-1668078

Seminars in Neurology, Inhaltsverzeichnis

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

¹Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois

,

Erin Talati Paquette

¹Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois

› Institutsangaben

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

Volltext

Referenzen

References
1 Brown RH, Hodes HL, Vaughan VC. , et al. Consent. Pediatrics 1976; 57 (03) 414-416
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
3 Katz AL, Webb SA. ; Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016; 138 (02) e20161485
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
5 Coleman DL, Rosoff PM. The legal authority of mature minors to consent to general medical treatment. Pediatrics 2013; 131 (04) 786-793
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
7 Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004; 25 (04) 243-264
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
9 Zawistowski CA, Frader JE. Ethical problems in pediatric critical care: consent. Crit Care Med 2003; 31 (5, Suppl): S407-S410
10 Bernat JL. Informed consent in pediatric neurology. Semin Pediatr Neurol 2002; 9 (01) 10-18
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
12 Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Dev 1982; 53 (06) 1589-1598
13 Pretzlaff RK. Should age be a deciding factor in ethical decision-making?. Health Care Anal 2005; 13 (02) 119-128
14 Alderson P. Competent children? Minors' consent to health care treatment and research. Soc Sci Med 2007; 65 (11) 2272-2283
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
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
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
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
19 Unguru Y, Coppes MJ, Kamani N. Rethinking pediatric assent: from requirement to ideal. Pediatr Clin North Am 2008; 55 (01) 211-222 , xii
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
21 Spike JP. Informed Consent Is the Essence of Capacity Assessment. J Law Med Ethics 2017; 45 (01) 95-105
22 van Staden WC. Acceptance and insight: incapacity to give informed consent. Curr Opin Psychiatry 2009; 22 (06) 554-558
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
24 Johnston C. Overriding competent medical treatment refusal by adolescents: when “no” means “no”. Arch Dis Child 2009; 94 (07) 487-491
25 Duncan RE, Sawyer SM. Respecting adolescents' autonomy (as long as they make the right choice). J Adolesc Health 2010; 47 (02) 113-114
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
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
28 Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Cent Rep 1997; 27 (06) 29-40
29 Traugott I, Alpers A. In their own hands: adolescents' refusals of medical treatment. Arch Pediatr Adolesc Med 1997; 151 (09) 922-927
30 Tate T, Goldberg A, Wightman A, Warady BA, Lantos JD. Controversy about dialysis for an adolescent. Pediatrics 2017; 140 (01) e20170327
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
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
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
34 Belcher v Charleston Area Med Ctr, 422 SE 2d 827, 838 (W Va 1992). 1992
35 In re E.G. 1989;133 I11. 2d 98, 549 N.E.2d 322
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
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
38 Mercurio MR. An adolescent's refusal of medical treatment: implications of the Abraham Cherrix case. Pediatrics 2007; 120 (06) 1357-1358
39 IN RE CASSANDRA C.* (SC 19426). 2015
40 Harris EA. Connecticut teenager with cancer loses court fight to refuse chemotherapy. The New York Times; 2015
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
42 Timms N, Lowes L. Autonomy or non-compliance in adolescent diabetes?. Br J Nurs 1999; 8 (12) 794-797 , 800
43 Fitzgerald D. Non-compliance in adolescents with chronic lung disease: causative factors and practical approach. Paediatr Respir Rev 2001; 2 (03) 260-267
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