This document provides background context on patient autonomy in medical decision making and discusses considerations around adolescent medical autonomy. It notes that while patient autonomy is important, decisions must represent their best interests. For adolescents, factors like cognitive capacity, family interests, and legal standards must be considered. The document recommends sources on these issues and frameworks like deontological and utilitarian approaches that debaters could take when discussing whether and how much autonomy adolescents ought to have over medical choices.
This document provides background context on patient autonomy in medical decision making and discusses considerations around adolescent medical autonomy. It notes that while patient autonomy is important, decisions must represent their best interests. For adolescents, factors like cognitive capacity, family interests, and legal standards must be considered. The document recommends sources on these issues and frameworks like deontological and utilitarian approaches that debaters could take when discussing whether and how much autonomy adolescents ought to have over medical choices.
This document provides background context on patient autonomy in medical decision making and discusses considerations around adolescent medical autonomy. It notes that while patient autonomy is important, decisions must represent their best interests. For adolescents, factors like cognitive capacity, family interests, and legal standards must be considered. The document recommends sources on these issues and frameworks like deontological and utilitarian approaches that debaters could take when discussing whether and how much autonomy adolescents ought to have over medical choices.
This document provides background context on patient autonomy in medical decision making and discusses considerations around adolescent medical autonomy. It notes that while patient autonomy is important, decisions must represent their best interests. For adolescents, factors like cognitive capacity, family interests, and legal standards must be considered. The document recommends sources on these issues and frameworks like deontological and utilitarian approaches that debaters could take when discussing whether and how much autonomy adolescents ought to have over medical choices.
Respecting and protecting patient autonomy is considered one of the primary directives which bounds modern medical practices. Nearly all societies and professional organizations agree that a patient has the right to be the final arbiter of all decisions concerning their physical body, or their participation in medical research. This is only the case, however, when a patient is capable of making decisions that represent their own self-determined best interests. If a patient is not capable of understanding and consenting or assenting to treatment or research, their autonomy may be suspended or overridden until such time as they are capable of understanding all of the facts that would inform their own calculation of their best interests. Over just the past three decades, there have been dramatic changes in the diagnosis, prevention, and treatment of many serious childhood illnesses, and medical conditions in general. Increased treatment choice, alongside a greater availability of information and routine care, has underscored the importance of patient autonomy. In the past, medical ethics construed the physician as expect decision maker; this paternalistic model no longer fits a world in which pharmaceuticals are marketed directly to TV audiences and diagnostic and treatment criteria can be easily found on the internet. It follows that more complex care options means more complex medical decisions. Some considerations that may play a role in framing an adolescents participation in medical decision making include:
Legal precedents Questions concerning cognitive capacity Emotional maturity Familial interests and conflicts of interests between children and family Religious freedom Boundaries of state power (questions of when children ought to become wards of the state) Privacy concerns Standards of professional and ethical conduct for medical personnel
For an excellent review of many of these issues, please see the McCabe 1996 article1 in the Suggested Reading section. For a specific review of the legal issues surrounding adolescent decision making, we recommend Pustilnik and Henry 20122.
1
McCabe, Mary Ann. "Involving children and adolescents in medical decision
making: developmental and clinical considerations." Journal of Pediatric Psychology 21.4 (1996): 505-516. 125 Watson Street, PO Box 38, Ripon, WI 54971-0038 (920) 748-6206 www.speechandebate.org
Framework Considerations Medical ethics are, of course, applied ethics. This means that abstract moral reasoning may inform the practice of medicine, but so too do other considerations, such as the limits of human ability and current medical resources. Additionally, our shared, deeply held convictions about how medical care ought to be delivered in certain circumstances do not always fit neatly under a single ethical theory. Medical-ethical norms may also vary from one culture to another, as customs surrounding illness, life processes, and death are often slow to change. For an number of excellent examples of some of the applied ethical principles involved in medical decision making, we recommend Section 5 (Minors as Decision-Makers) from The American Academy of Pediatrics 2011 Bioethics Resident Curriculum Case-Based Teaching Guides.3 Three words in the resolution will aid debaters who wish to run deontic frameworks: ought, right, and autonomous. The goal of a deontic framework for either side will be to prove that there is a moral obligation to ensure that any agent who is capable of making a soundly-derived autonomous choice within a medical context has the ability to make their decision without coercion or interference from an outside party (be it parents, the state, or the medical establishment.) It is interesting to note that the resolution does not necessarily specify who this obligation constrains. Debaters are strongly encouraged to research the process by which difficult medical decisions are made, so that they neither assign obligation to the wrong agent, nor leave the question open-ended. Similarly, debaters who prefer to use utilitarian frameworks may find themselves discussing quality of life concerns. We would suggest that util debaters also investigate the way in which public health policy shapes the use of public resources; for example, it may be the case that allowing teens to seek preventative care without parental knowledge or consent leads to lower public health expenditures in the future. Util debaters are thus encouraged to affirm the resolution as a public health policy, which might produce desirable effects for overall quality of life or health. Definitions And Language of the Resolution There are several interesting things to note about the way the resolution is phrased. First, there is the ambiguity of the term adolescent. In casual usage, an adolescent is generally assumed to be a teenager. But, the central area of clash in the resolution is understood to be: how much autonomy ought to be granted to patients under the legal age of majority? Therefore, it may make sense to set the upper bound of the term "adolescent" at age 18. We can also consider a more biological definition of adolescence, such as the WHOs4 definition. This may give us access to ground concerning reproductive health decisions; but reciprocally,
2
Pustilnik, Amanda C., and Leslie Meltzer Henry. "Adolescent Medical Decision Making and the Law of the Horse." J. Health Care L. & Pol'y 15 (2012): 1. 3 4
aspects of the biological definition suggest that brain development is not complete until midway through the second decade of life (specifically, research5 suggests cognitive development continues until age 25.) Given that there is no question that individuals in their early twenties deserve access to full medical autonomy, drawing a brightline for autonomy based on brain maturation alone may be impossible. It may also prove impractical to resolving any debate on this topic. It is also worth noting that a (non time-restricted) Google Scholar search for the phrase autonomous medical choices returned only 23 results overall, suggesting that "autonomous medical choice" is not a term of art in the medical or public health fields. This means that topical cases will need to come up with a reasonable way to define both which medical choices contribute to the question under discussion, and explain how the concept of autonomy interacts with medical choices. Even very simple principles such as the Hippocratic Oath may function to constrain current medical practice in ways which are nor immediately obvious. Debaters should examine status quo considerations of autonomy in the medical field carefully before crafting a framework that evaluates "autonomous medical choices" in the context of the rights of adolescents. Next, there is the action phrase: ought to have the right to make inherently implies both a rightsbased structure for our applied ethical reasoning, and also a moral justification. Here we will remind students and coaches once more that medicine, public health, and biomedical research are both fields with specialized forms of ethical decision making. It will behoove debaters and their coaches to learn about special considerations to the field. To see why this is the case, let us turn to the phrase medical choices. From a brief review of the topic literature, the following minimal list of categories of medical decisions fall within the scope of the resolution: Vaccination Genetic testing for the presence of genes which may pre-dispose individuals to disease processes The pursuit of psychiatric care and subsequent treatment options Curative or palliative treatment choices following the diagnosis of a terminal or serious illness Cost/benefit analyses regarding the use or substitution of pharmaceuticals Reproductive rights (including contraception, abortion, and surgical or oncological treatment that preclude future normal reproduction) Sex re-assignment surgery or surgery associated with a transition in sex/gender identity Cosmetic and elective procedures Ability to autonomously seek out and receive routine or preventative care Thus, given that the ground on this topic is inclusive of everything from a adolescent brain cancer patient signing a DNR order to another adolescent electing to undergo rhinoplasty, the average debater and her coach should endeavor to read a good deal of peer-reviewed topic literature.
Regardless of any decision to parametricize, frameworks will need to engage the issue of an adolescents ability to understand the implications and risks of medical treatments. Affirmative Ground Further, autonomy frameworks ought to be able to explain how they link to any specific example which an opponent might choose to present; this is because even small cosmetic procedures often entail significant risk (for example, risk of reaction to anesthesia, or risk of infection.) Negative Ground Intuitively, many negative debaters may wish to prove that adolescents do not meet a set of characteristics we might reasonably ascribe to autonomous agents. Negative debaters with this advocacy will likely need a reason to err towards denying autonomous choice to adolescents in indeterminate cases. Another and perhaps more subtle strategy (which would rely heavily on the framework the negative debater chose) is to show that respect for autonomy is not always obligatory in a medical context. For example, a negative debater may prove that doctors have other obligations that function as side constraints to their obligation to respect autonomy in general. Another approach could be to reject autonomy as a desirable value in the context of medical-ethical decision making, and instead re-orient the choice paradigm toward a relational understanding of the patients place as an agent within a family, community, or society.6 This type of advocacy would rely on a non-individualist framework, and offer a competing account of both morality and agency, and the application of these constructs within any medical field. This option may be particularly appealing to debaters who like to research and utilize diverse ethical frameworks and non-western or non-liberal philosophies.
Salter, Erica K. "Resisting the siren call of individualism in pediatric decision-
making and the role of relational interests." Journal of Medicine and Philosophy 39.1 (2014): 26-40.
Core Topic Literature
We have broken the topic literature down into several related fields and grouped citations accordingly. Overview of Medical Ethics Blustein, Jeffrey, Carol Levine, and Nancy Dubler. "The adolescent alone: decision making in health care in the United States." (1999). Cave, Emma. "Goodbye Gillick? Identifying and resolving problems with the concept of child competence." Legal Studies 34.1 (2014): 103-122. Cheng, Kam-Yuen, Thomas Ming, and Aaron Lai. "Can familism be justified?." Bioethics 26.8 (2012): 431-439. Cherry, Mark J. "Re-thinking the role of the family in medical decision-making." Journal of Medicine and Philosophy (2015): jhv011. Emanuel, Ezekiel J., and Linda L. Emanuel. "Four models of the physician-patient relationship." Jama 267.16 (1992): 2221-2226. Hill, B. Jessie. "Medical decision making by and on behalf of adolescents: Reconsidering first principles." Journal of Health Care Law & Policy 15 (2012). Kuther, Tara L. "Medical decision-making and minors: issues of consent and assent." Adolescence 38.150 (2003): 343. Langer, Dennis H. "Medical research involving children: some legal and ethical issues." Baylor L. Rev. 36 (1984): 1. Macklin, Ruth. "Dignity is a useless concept: it means no more than respect for persons or their autonomy." BMJ: British Medical Journal 327.7429 (2003): 1419. Moreno, Jonathan D. "Treating the adolescent patient: an ethical analysis." Journal of Adolescent Health Care 10.6 (1989): 454-459. Piker, Andy. "Balancing Liberation and Protection: A Moderate Approach to Adolescent Health Care Decision-Making." Bioethics 25.4 (2011): 202-208. Stirrat, Gordon M., and Robin Gill. "Autonomy in medical ethics after ONeill." Journal of Medical Ethics 31.3 (2005): 127-130.
Adolescent Behavior In The Context Of Medical Choices
Ginsburg, Kenneth R., et al. "Adolescents' perceptions of factors affecting their decisions to seek health care." JAmA 273.24 (1995): 1913-1918. Halpern-Felsher, Bonnie L., and Elizabeth Cauffman. "Costs and benefits of a decision: Decisionmaking competence in adolescents and adults." Journal of Applied Developmental Psychology 22.3 (2001): 257-273. Reyna, Valerie F., and Frank Farley. "Risk and rationality in adolescent decision making implications for theory, practice, and public policy." Psychological science in the public interest 7.1 (2006): 1-44. Rosato, Jennifer L. "Let's get real: Quilting a principled approach to adolescent empowerment in health care decision-making." DePaul L. Rev. 51 (2001): 769. Ziv, Amitai, Jack R. Boulet, and Gail B. Slap. "Utilization of physician offices by adolescents in the United States." Pediatrics 104.1 (1999): 35-42. Confidentiality Concerns Bayer, Ronald, John Santelli, and Robert Klitzman. "New challenges for electronic health records: confidentiality and access to sensitive health information about parents and adolescents." JAMA 313.1 (2015): 29-30. Carlisle, Jane, et al. "Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration." Journal of medical ethics 32.3 (2006): 133-137. English, Abigail. "Health care for adolescents: ensuring access, protecting privacy." Clearinghouse Rev. 39 (2005): 253. Ford, Carol, Abigail English, and Garry Sigman. "Confidential health care for adolescents: position paper of the Society for Adolescent Medicine." Journal of Adolescent Health 35.2 (2004): 160-167. Hui, Edwin. "Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong." Bioethics 25.9 (2011): 516-526. Proimos, Jenny. "Confidentiality issues in the adolescent population." Current opinion in pediatrics 9.4 (1997): 329. Sigman, Garry, et al. "Confidential health care for adolescents: position paper of the Society for Adolescent Medicine." Journal of adolescent health 21.6 (1997): 408-415.
End of Life Decisions
Doig, Christopher, and Ellen Burgess. "Withholding life-sustaining treatment: Are adolescents competent to make these decisions?." Canadian Medical Association Journal 162.11 (2000): 15851588. Lyon, Maureen E., et al. "What do adolescents want? An exploratory study regarding end-of-life decision-making." Journal of Adolescent Health 35.6 (2004): 529-e1. Penkower, Jessica A. "Potential Right of Chronically Ill Adolescents to Refuse Life-Saving Medical Treatment-Fatal Misuse of the Mature Minor Doctrine, The." DePaul L. Rev. 45 (1995): 1165. Legal Concerns Cherry, Mark J. "Ignoring the data and endangering children: why the mature minor standard for medical decision making must be abandoned." Journal of Medicine and Philosophy (2013): jht014. Kapp, Marshall B. "Legal and ethical issues in family caregiving and the role of public policy." Home health care services quarterly 12.4 (1992): 5-28. Newman, Andrew. "Adolescent consent to routine medical and surgical treatment: A proposal to simplify the law of teenage medical decision-making." Journal of Legal Medicine 22.4 (2001): 501532. Schlam, Lawrence, and Joseph P. Wood. "Informed consent to the medical treatment of minors: Law and practice." Health Matrix 10 (2000): 141. Scott, Elizabeth S., N. Dickon Reppucci, and Jennifer L. Woolard. "Evaluating adolescent decision making in legal contexts." Law and Human Behavior 19.3 (1995): 221. Coleman, Doriane Lambelet, and Philip M. Rosoff. "The legal authority of mature minors to consent to general medical treatment." Pediatrics 131.4 (2013): 786-793. Wadlington, Walter. "Medical decision making for and by children: tensions between parent, state, and child." U. Ill. L. Rev. (1994): 311. Psychology And Competence Galanter, Cathryn A., and Vimla L. Patel. "Medical decision making: a selective review for child psychiatrists and psychologists." Journal of Child Psychology and Psychiatry 46.7 (2005): 675-689. McCabe, Mary Ann. "Involving children and adolescents in medical decision making: developmental and clinical considerations." Journal of Pediatric Psychology 21.4 (1996): 505-516.
Miller, Victoria A., and Diana Harris. "Measuring children's decision-making involvement regarding chronic illness management." Journal of pediatric psychology (2011): jsr097. Stenger, Robert L. "Exclusive or concurrent competence to make medical decisions for adolescents in the United States and United Kingdom." JL & Health 14 (1999): 209. Steinberg, Laurence. "Should the science of adolescent brain development inform public policy?." American Psychologist 64.8 (2009): 739. Steinberg, Laurence. "Does recent research on adolescent brain development inform the mature minor doctrine?." Journal of Medicine and Philosophy 38.3 (2013): 256-267. Specific Treatments And Disease Processes Baker, Justin N., et al. "Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials." Cancer 119.23 (2013): 4154-4161. Brinkman, William B., et al. "In their own words: adolescent views on ADHD and their evolving role managing medication." Academic pediatrics 12.1 (2012): 53-61. Deatrick, Janet A. "It's their decision now: Perspectives of chronically disabled adolescents concerning surgery." Issues in comprehensive pediatric nursing 7.1 (1984): 17-31. Hofmann, Bjrn. "Bariatric surgery for obese children and adolescents: a review of the moral challenges." BMC medical ethics 14.1 (2013): 18. Lipstein, Ellen A., et al. "I'm the One Taking It: Adolescent Participation in Chronic Disease Treatment Decisions." Journal of adolescent health 53.2 (2013): 253-259. Miller, Victoria A., and Dennis Drotar. "Decision-making competence and adherence to treatment in adolescents with diabetes." Journal of Pediatric Psychology 32.2 (2007): 178-188. Quinn, Gwendolyn P., et al. "Who decides? Decision making and Fertility Preservation in Teens with Cancer: A Review of the literature." Journal of Adolescent Health 49.4 (2011): 337-346. Sable, Craig, et al. "Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues A Scientific Statement From the American Heart Association." Circulation 123.13 (2011): 1454-1485. Simmons, Magenta B., Sarah E. Hetrick, and Anthony F. Jorm. "Experiences of treatment decision making for young people diagnosed with depressive disorders: a qualitative study in primary care and specialist mental health settings." BMC psychiatry 11.1 (2011): 194.
Vrouenraets, Lieke Josephina Jeanne Johanna, et al. "Early Medical Treatment of Children and Adolescents With Gender Dysphoria: An Empirical Ethical Study." Journal of Adolescent Health (2015).
