The Adolescent Alone: Decision Making in Health Care in the United States

A growing number of adolescents do not have a supportive and trusting relationship with an adult in a birth, foster, adoptive, or chosen family. Through a variety of circumstances, they are literally or functionally ‘alone’. Yet like all adolescents they need routine and sometimes specialized health care. This book is a collection of essays, case studies, and guidelines that describe the demography, philosophical, medical, legal, and developmental framework in which these youth and health care staff confront medical decision making. The authors address questions of consent, confidentiality, access to care, and the right to refuse or demand care. Throughout the emphasis is on the real-world experience of adolescents as they struggle to overcome the challenges of being alone. Professionals who work with these adolescents cannot replace their absent or disinterested families but can fulfill the critical role of trusted adult advisor.

• Case studies are presented, illustrating complex ethical problems in the care of adolescents alone • Includes guidelines for health care providers

Introduction: the adolescent alone: ‘you got nobody in your corner’ Carol Levine, Jeffrey Blustein and Nancy Dubler; Part I. The Adolescent Alone: Who and How? Audrey Smith Rogers and Susan Newcomer; 2. Adolescent development: implications for adolescents alone Nancy Leffert and Anne Petersen; 3. The health of American adolescents: current issues and service gaps Neal Hoffman; 4. Health care for the adolescent alone: a legal landscape Abigail English; 5. Valid consent to treatment and the unsupervised adolescent Jeffrey Blustein and Jonathan Moreno; 6. The impact of growing up orphaned on decision-making capacity Francine Cournos; 7. The experience of coming out among gay and lesbian youth: adolescents alone? Andrew Boxer, Judith Cook and Gilbert Herdt; 8. Lives in the balance: a profile of homeless youth in New York city Michael Clatts, Deborah Hillman, Aylin Atillasoy and W. Rees Davis; 9. Adolescents and medical decision making: observations of a medical anthropologist Betty Levin; Part II. Introduction: Case 1. Consent and the Limits of Staff as ‘Family’ Abigail English; Case 2. Placing an Unplaceable Teen Cathy Cramer, Linda Freeman and Audrey Rogers; Case 3. An Adolescent’s Contested Wish for a Kidney Transplant Jeffrey Blustein and Susan Coupey; Case 4. Saying ‘No’ to Treatment in Terminal Illness Jonathan Moreno and Ken Schonberg; Case 5. Consent and an Informal Guardian Peter Millock and Donna Futterman; Case 6. Does ‘Nonjudgmental’ Care Include Prescribing Hormones? Andrew Boxer and Michael Clatts; Case 7. An Adolescent’s Decisions about Reproduction and HIV Transmission Francine Cournos and Nancy Dubler; Case 8. Family and Culture in HIV Care for a Latino Adolescent Luis H. Zayas; Case 9. Consent by Antisocial Adolescents: Defining the ‘Least Bad’ Option Michael Pawel; Part III. Ethics Guidelines for Health Care Providers on Treating ‘Adolescents Alone’ Jeffrey Blustein, Nancy Dubler and Carol Levine.