Abstracts
Abstract
Infants born to opioid-dependent women are typically admitted to neonatal intensive-care units for management of neonatal abstinence syndrome (NAS), and their treatment requires medical decision making. It is not only the infants’ vulnerability, in terms of their incompetence and medical condition, that is present in those circumstances, but also the mothers’ situational vulnerability, which arises with the possibility of their engagement in medical decision making regarding their infants. Vulnerability is a concept that has often, if not always, been traced back to individuals. In this paper, we suggest that in some cases evaluations and attributions of vulnerability to either individuals or populations fall short of capturing all aspects of vulnerability. We ask whether this individual-based evaluation is sufficient for identifying all the vulnerabilities arising in the situation. Moreover, we suggest that the “unit” of vulnerability attribution, typically a person who is a likely target of harm and/or moral violations, should not simply be reduced to the individual. Rather, the unit should in some cases be seen as constituted by an entity that is interpersonal in nature. The kind of real vulnerability that we identify in this paper is inherently embedded in a dyadic relationship, and notions of vulnerability that decompose social relations into individuals run the risk of missing the vulnerability in question. We elaborate this kind vulnerability by discussing of role of opioid-dependent mothers in decision making about their infants’ treatment.
Résumé
Les nourrissons nés de femmes dépendantes aux opioïdes sont généralement admis dans des unités de soins intensifs néonatals pour la prise en charge du syndrome d’abstinence néonatale (SAN), et leur traitement nécessite une prise de décision médicale. Ce n’est pas seulement la vulnérabilité des nourrissons, en termes d’incompétence et de dépendance médicale, qui est présente dans ces circonstances, mais aussi la vulnérabilité situationnelle des mères, qui découle de la possibilité de leur participation à la prise de décision médicale concernant leurs enfants. La vulnérabilité est un concept qui a souvent, sinon toujours été relié à des individus. Dans cet article, nous suggérons que, dans certains cas, les évaluations et les attributions de vulnérabilité aux individus ou aux populations ne permettent pas de saisir tous les aspects de la vulnérabilité. Nous demandons si cette évaluation individuelle est suffisante pour identifier toutes les vulnérabilités qui apparaissent dans la situation. De plus, nous suggérons que l’« unité » d’attribution de la vulnérabilité, généralement une personne qui est une cible probable de dommages ou de violations morales, ne devrait pas simplement être réduite à l’individu. Au contraire, l’unité devrait dans certains cas être considérée comme une entité de nature interpersonnelle. Le type de vulnérabilité réelle que nous identifions dans cet article est intrinsèquement intégré dans une relation dyadique, et les notions de vulnérabilité qui décomposent les relations sociales en individus risquent de manquer la vulnérabilité en question. Nous développons ce type de vulnérabilité en discutant du rôle des mères dépendantes aux opioïdes dans la prise de décision concernant le traitement de leurs enfants.
Appendices
Bibliography
- Abdel-Latif, Mohammed E., Danette Boswell, Margaret Broom, Judith Smith, and Deborah Davis, “Parental Presence on Neonatal Intensive Care Unit Clinical Bedside Rounds: Randomised Trial and Focus Group Discussion”, Archives of Disease in Childhood—Fetal and Neonatal Edition, vol. 100, no. 3, 2015, p. F203-209.
- American Academy of Pediatrics (AAP), Committee on Hospital Care, “Family-Centered Care and the Pediatrician’s Role,” Pediatrics, vol. 112, no. 3 Pt 1, 2003, p. 691-697.
- Anderson, Joel, “Vulnerability, Autonomy Gaps and Social Exclusion,” in Christine Straehle (ed.), Vulnerability, Autonomy, and Applied Ethics, New York and London, Routledge, 2017, p. 49-55.
- Ashley, Olivia S., Mary E. Marsden, and Thomas M. Brady, “Effectiveness of Substance Abuse Treatment Programming for Women: A Review,” The American Journal of Drug and Alcohol Abuse, vol. 29, no. 1, 2003, p. 19-53.
- Axelin, Anna, Sari Ahlqvist-Björkroth, Wiveka Kauppila, Zack Boukydis, and Liisa Lehtonen, “Nurses’ Perspectives on the Close Collaboration with Parents Training Program in the NICU,” MCN American Journal of Maternal Child Nursing, vol. 39, no. 4, 2014, p. 260-268.
- Axelin, Anna, Jyri Outinen, Kirsi Lainema, Liisa Lehtonen, and Linda S. Franck, “Neonatologists Can Impede or Support Parents’ Participation in Decision-Making during Medical Rounds in Neonatal Intensive Care Units,” Acta Paediatrica, Epub ahead of print, May 3, 2018.
- Beauchamp, Tom L., and James F. Childress, Principles of Biomedical Ethics, New York, NY & Oxford, Oxford University Press, 2001.
- Benoit, Cecilia, Samantha Magnus, Rachel Philips, Lenora Marcellus, and Sinead Charbonneau, “Complicating the Dominant Morality Discourse: Mothers and Fathers’ Constructions of Substance Use during Pregnancy and Early Parenthood”, International Journal for Equity in Health, vol. 14, no. 72, 2015, doi: 10.1186/s12939-015-0206-7.
- Bowlby, John, “Attachment and Loss: Retrospect and Prospect,” American Journal of Orthopsychiatry, vol. 52, no. 4, 1982, p. 664-678.
- Bracken-Roche, Dearbhail, Emily Bell, Mary Ellen Macdonald, and Eric Racine, “The Concept of ‘Vulnerability’ in Research Ethics: An In-Depth Analysis of Policies and Guidelines,” Health Research Policy and Systems, vol. 15, no. 8, 2017, doi: 10.1186/s12961-016-0164-6.
- Cameron, Melissa A., Charles L. Schleien, and Marilyn C. Morris, “Parental Presence on Pediatric Intensive Care Unit Rounds,” The Journal of Pediatrics, vol. 155, no. 4, 2009, p. 522-528.
- Charland, Louis C., “Cynthia’s Dilemma: Consenting to Heroin Prescription,” American Journal of Bioethics, vol. 2, no. 2, 2002, p. 37-47.
- Cleveland, Lisa M., and Rebecca Bonugli, “Experiences of Mothers of Infants with Neonatal Abstinence Syndrome in the Neonatal Intensive Care Unit,” Journal of Obstetric, Gynecologic, and Neonatal Nursing, vol. 43, no. 3, 2014, p. 318-29.
- Cleveland, Lisa M., and Sara L. Gill, “‘Try Not To Judge’: Mothers of Substance Exposed Infants,” MCN The American Journal of Maternal/Child Nursing, vol. 38, no. 4, 2013, p. 200-205.
- Dodds, Susan, “Dependence, Care and Vulnerability,” in Catriona Mackenzie, Wendy Rogers, and Susan Dodds (eds.), Vulnerability: New Essays in Ethics and Feminist Philosophy, Oxford, Oxford University Press, 2013, p. 182.
- Entwistle, Vikki A., and Ian S. Watt, “Patient Involvement in Treatment Decision-Making: The Case for a Broader Conceptual Framework,” Patient Education & Counseling, vol. 63, no. 3, 2006, p. 268-278.
- Farsides, Bobbie, “Children, Clinical Research and Vulnerability,” in Christine Straehle (ed.), Vulnerability, Autonomy, and Applied Ethics, New York and London, Routledge, 2017, p. 185-198.
- Finnegan, Loretta P., James F. Connaughton, Jr, Reuben E. Kron, and John P. Emich, “Neonatal Abstinence Syndrome: Assessment and Management”, Addictive Diseases, vol. 2, no. 1-2, 1975, p. 141-158.
- Flacking, Renée, Liisa Lehtonen, Gillian Thomson, Anna Axelin, Sari Ahlqvist, Victoria Moran, Uwe Ewald, and Fiona Dykes [Separation and Closeness Experiences in the Neonatal Environment (SCENE) group], “Closeness and Separation in Neonatal Intensive Care,” Acta Paediatrica, vol. 101, no. 10, 2012, p. 1032-1037.
- Focquaert, Farah, “Deep Brain Stimulation in Children: Parental Authority Versus Shared Decision-Making,” Neuroethics, vol. 6, no. 3, 2013, p. 447-455.
- Foddy, Bennett, and Julian Savulescu, “Addiction and Autonomy: Can Addicted People Consent to the Prescription of their Drug of Addiction?”, Bioethics, vol. 20, no. 1, 2006, doi: 10.1111/j.1467-8519.2006.00470.x.
- Fry, Craig, and Robyn Dwyer, “For Love or Money? An Exploratory Study of Why Injecting Drug Users Participate in Research,” Addiction, vol. 96, no. 9, 2001, p. 1319-1325.
- Ganguli-Mitra, Agomoni, and Nikola Biller-Andorno, “Vulnerability in Health Care and Research Ethics,” in Ruth Chadwick, Henk ten Have, and Eric M. Meslin (eds.), The SAGE Handbook of Health Care Ethics: Core and Emerging Issues, London, SAGE, 2011, p. 239-250.
- Goodin, Robert, Protecting the Vulnerable: A Re-Analysis of our Social Responsibilities, Chicago, University of Chicago Press, 1986.
- Green, Jennifer Greif, Katie A. McLaughlin, Patricia A. Berglund, Michael J. Gruber, Nancy A. Sampson, Alan M. Zaslavsky, and Ronald C. Kessler, “Childhood Adversities and Adult Psychiatric Disorders in the National Comorbidity Survey Replication I: Associations with First Onset of DSMIV Disorders,” Archives of General Psychiatry, vol. 67, no. 2, 2010, p. 113-123.
- Greisen, Gorm, Nadia Mirante, Dominique Haumont, Véronique Pierrat, Carmen R. Pallás-Alonso, Inga Warren, Bert J. Smit, Björn Westrup, Jacques Sizun, Alice Maraschini, and Marina Cuttini [for the ESF Network], “Parents, Siblings and Grandparents in the Neonatal Intensive Care Unit: A Survey of Policies in Eight European Countries,” Acta Paediatrica, vol. 98, no. 11, 2009, p. 1744-1750.
- Hacking, Ian, “The Looping Effects of Human Kinds,” in Dan Sperber, David Premack, and Ann James Premack (eds.), Causal Cognition: A Multidisciplinary Debate, 1996 (print)/2012 (online) Oxford Scholarship Online, doi: 10.1093/acprof:oso/9780198524021.001.0001.
- Heffner, Jaimee L., Thomas J. Blom, and Robert M. Anthenelli, “Gender Differences in Trauma History and Symptoms as Predictors of Relapse to Alcohol and Drug Use,” The American Journal on Addictions, vol. 20, no. 4, 2011, p. 307-311.
- Henden, Edmund, “Addiction, Voluntary Choice, and Informed Consent: A Reply to Uusitalo and Broers,” Bioethics, vol. 30, no. 4, 2016, p. 293-296.
- Henden, Edmund, “Heroin Addiction and Voluntary Choice: The Case of Informed Consent,” Bioethics, vol. 27, no. 7, 2013, p. 395–401.
- Hoffmann, Tammy C., Victor M. Montori, and Chris Del Mar, “The Connection Between Evidence-Based Medicine and Shared Decision Making,” JAMA, vol. 312, no. 13, 2014, p. 1295-1296.
- Hurst, Samia, “Vulnerability in Research and Health Care: Describing the Elephant in the Room?”, Bioethics, vol. 22, no. 4, 2008, p. 191-202.
- Hyman, Steven E., “The Neurobiology of Addiction: Implications for Voluntary Control of Behavior,” American Journal of Bioethics, vol. 7, no. 1, 2007, doi: 10.1080/152651606 01063969.
- Kelly, Michelle M., Anping Xie, Pascale Carayon, Lori L. DuBenske, Mary L. Ehlenbach, and Elizabeth D. Cox, “Strategies for Improving Family Engagement During Family-Centered Rounds,” Journal of Hospital Medicine, vol. 8, no. 4, 2013, p. 201-207.
- Kocherlakota, Prabhakar, “Neonatal Abstinence Syndrome,” Pediatrics, vol. 134, no. 2, 2014, p. e547-561.
- Koepke, Julius E., S. Anglin, John Austin, and J. Delesalle, “Becoming Parents: Feelings of Adoptive Mothers”, Pediatric Nursing, vol. 17, no. 4, 1991, p. 333-336.
- Levy, Neil, “Addiction, Autonomy and Ego-depletion: A Response to Bennett Foddy and Julian Savulescu,” Bioethics, vol. 20, no. 1, 2006, p. 16-20.
- Luna, Florencia, “Elucidating the Concept of Vulnerability: Layers not Labels,” International Journal of Feminist Approaches to Bioethics, vol. 2, no. 1, 2009, p. 121-139.
- Mackenzie, Catriona, Wendy Rogers, and Susan Dodds, introduction to Catriona Mackenzie, Wendy Rogers, and Susan Dodds (eds.), Vulnerability: New Essays in Ethics and Feminist Philosophy, Oxford, Oxford University Press, 2014, p. 1-29.
- Mackenzie, Catriona, and Natalie Stoljar (eds.), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, New York and London, Oxford University Press, 2000.
- Maguire, Denise, Mary Webb, Denise Passmore, and Genevieve Cline, “NICU Nurses’ Lived Experience: Caring for Infants with Neonatal Abstinence Syndrome,” Advances in Neonatal Care, vol. 12, no. 5, 2012, p. 281-285.
- Marcellus, Lenora, Tara Loutit, and Shannon Cross, “A National Survey of the Nursing Care of Infants With Prenatal Substance Exposure in Canadian NICUs,” Advances in Neonatal Care, vol. 15, no. 5, 2015, p. 336-344.
- Martin, Angela N., Nicolas Tavaglione, and Samia A. Hurst, “Resolving the Conflict: Clarifying ‘Vulnerability’ in Health Care Ethics,” Kennedy Institute of Ethics Journal, vol. 24, no. 1, 2014, p. 51-72.
- McQueen, Karen, and Jodie Murphy-Oikonen, “Neonatal Abstinence Syndrome,” The New England Journal of Medicine, vol. 375, no. 25, 2016, p. 2468-2479.
- Morán-Sánchez, Inés, Aurélio Luna, Maria Sánchez-Muñoz, Beatriz Aguilera-Alcaraz, and Maria D. Pérez-Cárceles, “Decision-Making Capacity for Research Participation among Addicted People: A Cross-Sectional Study,” BMC Medical Ethics, vol. 17, no. 3, 2016, doi: 10.1186/s12910-015-0086-9.
- Neale, Joanne, Sarah Nettleton, and Lucy Pickering, The Everyday Lives of Recovering Heroin Users, London, The RSA, 2012.
- Newman, Adam, Gregory A. Davies, Kimberly Dow, Belinda Holmes, Jessica Macdonald, Sarah McKnight, and Lynn Newton, “Rooming-In Care for Infants of Opioid-Dependent Mothers: Implementation and Evaluation at a Tertiary Care Hospital”, Canadian Family Physician, vol. 16, no. 12, 2015, p. e555-561.
- O’Brien, Karel, Marianne Bracht, Kristy Macdonell, Tammy McBride, Kate Robson, Lori O’Leary, Kristen Christie, Mary Galarza, Tenzin Dicky, Adik Levin, and Shoo K. Lee, “A Pilot Cohort Analytic Study of Family Integrated Care in a Canadian Neonatal Intensive Care Unit,” BMC Pregnancy and Childbirth, vol. 13, no. Suppl. 1, 2013, p. S12.
- Pajulo, Marjukka, Elina Savonlahti, Andre Sourander, Sari Ahlqvist, Hans Helenius, and Jorma Piha, “An Early Report on the Mother-Baby Interactive Capacity of Substance-Abusing Mothers,” Journal of Substance Abuse Treatment, vol. 20, no. 2, 2001, p. 143-151.
- Parolin, Micolin, and Alessandra Simonelli, “Attachment Theory and Maternal Drug Addiction: The Contribution to Parenting Interventions,” Frontiers in Psychiatry, vol. 7, article 152, 2016, doi: 10.3389/fpsyt.2016.00152.
- Pennonen, Marjo, and Anja Koski-Jännes, “Päihdealan-ammattilaisten käsityksiä aineriippuvuuksista” [Conceptions of Substance Abuse among Professionals in Addiction Health Care], Juvenes, vol. 18, no. 3, 2010, p. 208-224.
- Perneger, Thomas V., Annie Mino, Francisco Giner, and Barbara Broers, “Patterns of Opiate Use in a Heroin Maintenance Programme,” Psychopharmacology, vol. 152, no. 1, 2000, p. 7-13.
- Powis, Beverly, Michael Gossop, Catherine Bury, Katherine Payne, and Paul Griffiths, “Drug Using Mothers: Social, Psychological and Substance Use Problems of Women Opiate Users with Children”, Drug and Alcohol Review, vol. 19, no. 2, 2000, p. 171-180.
- Ross, Lainie F., “Children in Medical Research: Balancing Protection and Access—Has the Pendulum Swung Too Far?”, Perspectives in Biology and Medicine, vol. 47, no. 4, 2004, p. 519-536.
- Sawyer, Alexandra, Susan Ayers, Sophia Bertullies, Margaret Thomas, Andrew D. Weeks, Charles W. Yoxall, and Leila Duley, “Providing Immediate Neonatal Care and Resuscitation at Birth beside the Mother: Parents’ Views, A Qualitative Study,” BMJ Open, vol. 5, no. 9, 2015, p. e008495, doi: 10.1136/bmjopen-2015-008494.
- Smit, Eileen M., “Maternal Stress during Hospitalization of the Adopted Child”, MCN: The American Journal of Maternal/Child Nursing, vol. 25, no. 1, 2000, p. 37-42.
- Straehle, Christine (ed.), Vulnerability, Autonomy, and Applied Ethics, New York and London, Routledge, 2017.
- Subramony, Anupama, Patricia A. Hametz, and Dorene Balmer, “Family-Centered Rounds in Theory and Practice: An Ethnographic Case Study,” Academic Pediatrics, vol. 14, no. 2, 2014, p. 200-206.
- Sullivan, Regina, Rosemarie Perry, Aliza Sloan, Karine Kleinhaus, and Nina Burtchen, “Infant Bonding and Attachment to the Caregiver: Insights from Basic and Clinical Science”, Clinical Perinatology, vol. 38, no. 4, 2011, p. 643-655.
- Swanson, Kristen M., “Empirical Development of a Middle Range Theory of Caring,” Nursing Research, vol. 40, no. 3, 1991, p. 161-166.
- ten Have, Henk, Vulnerability: Challenging Bioethics, London and New York, Routledge, 2016.
- Uusitalo, Susanne, and Barbara Broers, “Addiction, Heroin-Assisted Treatment and the Idea of Abstinence: A Reply to Henden,” Bioethics, vol. 30, no. 9, 2016, p. 776-780.
- Uusitalo, Susanne, and Barbara Broers, “Rethinking Informed Consent in Research on heroin Assisted Treatment,” Bioethics, vol. 29, no. 7, 2015, p. 462-469.
- Wachman, Elisha M., Davida M. Schiff, and Michael Silverstein, “Neonatal Abstinence Syndrome: Advances in Diagnosis and Treatment,” JAMA, vol. 319, no. 13, 2018, p. 1362-1374.
- Walker, Tom, “Giving Addicts Their Drug of Choice: The Problem of Consent,” Bioethics, vol. 22, no. 6, 2008, p. 314-320.
- Wiechelt, Shelly A., “Introduction to ‘International Perspectives on Women’s Substance Use’, special issue”, Substance Use & Misuse, vol. 43, no. 8-9, 2008, p. 973-977.
- World Health Organization (WHO) & Joint United Nations Programme on HIV/AIDS (UNAIDS), Ethical Engagement of People Who Inject Drugs in HIV Prevention Trials, Istanbul, Turkey, WHO & UNAIDS, 2010.
- World Health Organization (WHO), Guidelines for the Identification and Management ofSubstance Use and Substance Use Disorders, WHO Document Production Services, Geneva, Switzerland, WHO, 2014.