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"" It establishes the right to refuse medically recommended treatment for adolescents 14 and older who have a life-threatening illness, if the following conditions are met: the parents and the adolescent make this decision jointly; the patient is capable of making an informed choice; a range of treatments have been considered; and the parents are acting in the best interest of their child. If these conditions are fulfilled the parents are protected from charges of medical neglect if they concur in the decision to forgo medically recommended treatment (Mercurio, 2007). "
[Show abstract][Hide abstract] 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
"Many young adolescents have as mature an understanding of death as those aged !18 years . Unique challenges also arise from the adolescentefamily dynamic if there are disagreements in treatment preferences, particularly in the context of the adolescents' lack of legal authority to make treatment decisions under the age of 18 years in most states . Cancer remains the leading illness causing death for adolescents . "
[Show abstract][Hide abstract] 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.
Full-text · Article · Dec 2013 · Journal of Adolescent Health
") -14 y, M -ALL -Jehovah's Witness -70% -Refused transfusion needed to sustain life after start of chemo -Parents sought help of CPS to counter refusal; hospital supported patient's right to refuse as mature minor -Court granted refusal with patient as mature minor -Died less than 12 hours after court order allowing refusal of transfusion Virginia, US, 2005 (Ross, 2009; Mercurio, 2007; "