An adolescent's refusal of medical treatment: Implications of the Abraham Cheerix case

Yale University School of Medicine, Department of Pediatrics, PO Box 208064, New Haven, CT 06520, USA.
PEDIATRICS (Impact Factor: 5.3). 01/2008; 120(6):1357-8. DOI: 10.1542/peds.2007-1458
Source: PubMed
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    ABSTRACT: To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC). Adolescent (age 14-20years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion. Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above. Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
    Journal of Adolescent Health 12/2013; 54(6). DOI:10.1016/j.jadohealth.2013.10.206 · 2.75 Impact Factor
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    ABSTRACT: This chapter reviews salient ethical issues that arise in the context of adolescent health care and decision making. It pays special attention to decision making near the end of life by those adolescents in the terminal phase of an incurable illness for whom palliative and hospice care services offer important benefit. The discussion will proceed in three steps. First, I discuss the values and psychosocial assumptions that underlie the category of adolescence in our culture. I note significant differences between an age-graded categorical approach to rights and decision-making autonomy and a functional and developmental approach. The former is still largely operative in the law, while the latter is more common in clinical practice settings. Second, I consider the current developmental viewpoint concerning adolescent capability in relation to common standards of decision-making capacity, informed consent, and reasonable judgment. These standards are not solely empirical or operational in character; they are also value-laden. A focus on the special features of adolescent reasoning suggests that neither the standard bioethics account of individualistic autonomy nor the account of objective, paternalistic best interests (beneficence) fits well with the health care situation of most adolescents. A more relational and contextualized concept of autonomy and patient rights is needed. Finally, I address decisions to forgo life-sustaining medical treatments and to adopt palliative and hospice care plans in light of an expanded ethical role for relational autonomy for adolescent
    Coping with Loss in Adolescence, Edited by Kenneth Doka, Amy S. Tucci, 01/2014: pages 29-45; Hospice Foundation of America.
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    ABSTRACT: IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of family-centered ACP. DESIGN AND SETTING Two-group randomized controlled trial in a pediatric oncology program. PARTICIPANTS Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012. INTERVENTION Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. MAIN OUTCOME MEASURES Statement of treatment preferences and Decisional Conflict Scale score. RESULTS The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation. CONCLUSIONS Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.
    03/2013; 167(5):1-8. DOI:10.1001/jamapediatrics.2013.943


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