Skip to main content Accessibility help
×
Hostname: page-component-78c5997874-s2hrs Total loading time: 0 Render date: 2024-11-09T15:16:26.641Z Has data issue: false hasContentIssue false

Section 2 - Consultation

Published online by Cambridge University Press:  17 February 2022

D. Micah Hester
Affiliation:
University of Arkansas for Medical Sciences, College of Medicine
Toby L. Schonfeld
Affiliation:
National Center for Ethics in Health Care, US Department of Veterans Affairs
Get access

Summary

Image of the first page of this content. For PDF version, please use the ‘Save PDF’ preceeding this image.'
Type
Chapter
Information
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

References

American Society for Bioethics and Humanities (ASBH). (2011). Core Competencies for Healthcare Ethics Consultation, 2nd ed. Glenview, IL: American Society for Bioethics and Humanities.Google Scholar
American Society for Bioethics and Humanities (ASBH). (2015). Improving Competencies in Clinical Ethics Consultation: An Education Guide, 2nd ed. Chicago: American Society for Bioethics and Humanities.Google Scholar
Beauchamp, TL, Childress, JF (2019). Principles of Biomedical Ethics. New York: Oxford University Press.Google ScholarPubMed
Fletcher, C, Siegler, M (1996). What are the goals of ethics consultation? A consensus statement. Journal of Clinical Ethics; 7(2): 122126.CrossRefGoogle ScholarPubMed
HCEC Certification Commission. (n.d.). Healthcare Ethics Consultant-Certified Program. https://asbh.org/certification/hcec-certificationGoogle Scholar
Hester, DM. (2008). Ethics by Committee. Lanham, MD: Rowman & Littlefield Publishers, Inc.Google Scholar
Jonsen, A, Siegler, M, Winslade, WJ (2015). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 8th ed. New York: McGraw-Hill.Google Scholar
Lo, B (1987). Behind closed doors. The New England Journal of Medicine, 317(1): 4650.CrossRefGoogle ScholarPubMed
Tarzian, AJ, Wocial, L, The ASBH Clinical Ethics Consultation Affairs Committee. (2015). A code of ethics for health care ethics consultants: Journey to the present and implications for the field. The American Journal of Bioethics, 15(5): 3851.CrossRefGoogle Scholar
Wilkinson, D, Truog, R (2015). In favour of medical dissensus: Why we should agree to disagree about end-of-life decisions. Bioethics, 30(2): 109118.CrossRefGoogle ScholarPubMed

References

Jonsen, AR, Siegler, M, Winslade, WJ (2015). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 8th ed. New York: McGraw Hill.Google Scholar
National Center for Ethics in Health Care. (2015). Ethics Consultation: Responding to Ethics Questions in Health Care, 2nd ed. Washington, DC: US Department of Veterans Affairs.Google Scholar
Shelton, W, Bjarnadottir, D (2008). Ethics consultation and the committee. In Hester, DM, ed., Ethics by Committee: A Textbook on Consultation, Organization, and Education for Hospital Ethics Committees. Lanham, MD: Rowman & Littlefield, 4977.Google Scholar
Spike, J (2012). Ethics consultation process. In Hester, DM and Schonfeld, TL, eds., Guidance for Healthcare Ethics Committees. Cambridge University Press, 4147.Google Scholar

References

Beach, MC, Sugarman, J (2019). Realizing shared decision-making in practice. JAMA, 322(9): 811812.CrossRefGoogle ScholarPubMed
Berg, JW (2003). Understanding waiver. Houston Law Review, 40(2): 281344.Google Scholar
Berg, JW (2012). All for one and one for all: Informed consent and public health. Houston Law Review, 50(1): 140.Google Scholar
Berg, JW, Appelbaum, PS, Grisso, T (1996). Constructing competence: Formulating standards of legal competence to make medical decisions. Rutgers Law Review, 48(2): 345396.Google ScholarPubMed
Berg, JW, Appelbaum, PS, Lidz, C, Parker, L (2001). Informed Consent: Legal Theory and Clinical Practice, 2nd ed. New York: Oxford University Press.CrossRefGoogle Scholar
Paladino, J, Lakin, JR, Sanders, JJ (2019). Communication strategies for sharing prognostic information with patients. JAMA, 322(14): 13451346.CrossRefGoogle ScholarPubMed

References

American Academy of Pediatrics (2009). Policy statement – using personal health records to improve the quality of health care for children. Pediatrics, 124(1): 403409.Google Scholar
American Academy of Pediatrics (2012). Policy statement – standards for health information technology to ensure adolescent privacy. Pediatrics, 130(5): 987990.CrossRefGoogle Scholar
Ancker, JS, Mauer, E, Kalish, RB, Vest, JR, Gossey, JT (2019). Early adopters of patient-generated health data upload in an electronic patient portal. Applied Clinical Informatics, 10(2): 254260.Google Scholar
Bourgeois, FC, DesRoches, CM, Bell, SK (2018). Ethical challenges raised by OpenNotes for pediatric and adolescent patients. Pediatrics, 141(6): e20172745.Google Scholar
Cushman, R, Froomkin, AM, Cava, A, Abril, P, Goodman, KW (2010). Ethical, legal and social issues for personal health records and applications. Journal of Biomedical Informatics, 43(5 Suppl.): S51S55.CrossRefGoogle ScholarPubMed
Goodman, KW (2016). Ethics, Medicine and Information Technology: Intelligent Machines and the Transformation of Health Care. Cambridge University Press.Google Scholar
Miklin, DJ, Vangara, SS, Delamater, AM, Goodman, KW (2019). Understanding of and barriers to electronic health record patient portal access in a culturally diverse pediatric population. JMIR Medical Informatics, 7(2): e11570.CrossRefGoogle Scholar
Neuner, J, Fedders, M, Caravella, M, Bradford, L, Schapira, M (2015). Meaningful use and the patient portal: Patient enrollment, use, and satisfaction with patient portals at a later-adopting center. American Journal of Medical Quality, 20(2): 105113.CrossRefGoogle Scholar
Steitz, B, Cronin, RM, Davis, SE, Yan, E, Jackson, GP (2017). Long-term patterns of patient portal use for pediatric patients at an academic medical center. Applied Clinical Informatics, 8(3): 779793.Google ScholarPubMed
US Department of Health and Human Services. (2015). The HIPAA Privacy Rule. www.hhs.gov/hipaa/for-professionals/privacy/index.htmlGoogle Scholar
US Department of Health and Human Services. (2017). Summary of the HIPAA Privacy Rule. www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.htmlGoogle Scholar
Zhao, JY, Song, B, Anand, E, et al.. Barriers, facilitators, and solutions to optimal patient portal and personal health record use: A systematic review of the literature. AMIA Annual Symposium Proceedings: 1913–1922.Google Scholar

References

American Bar Association Commission on Law and Aging. (2021, April 20). Capacity Assessment. www.americanbar.org/groups/law_aging/resources/capacity_assessmentGoogle Scholar
Appelbaum, PS (2007). Assessment of patients’ competence to consent to treatment. New England Journal of Medicine, 357(18): 18341840.CrossRefGoogle ScholarPubMed
Brock, DW, Wartman, SA (1990). When competent patients make irrational choices. New England Journal of Medicine, 322(22): 15951599.Google Scholar
Buchanan, AE, Brock, DW (1989). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge University Press.Google Scholar
Cruzan v. Director of Missouri Department of Health. (1990), 497 US 261, 110 S.Ct. 2841, 111 L.Ed. 2d. 224.Google Scholar
Derse, AR, Schiedermayer, DL (2015). Practical Ethics for Students, Interns & Residents, 4th ed. Hagerstown, MD: University Publishing Group.Google Scholar
Ganzini, L, Volicer, L, Nelson, W, Derse, AR. (2003). Pitfalls in assessment of decision-making capacity. Psychosomatics, 44(3): 237243.CrossRefGoogle ScholarPubMed
Ganzini, L, Volicer, L, Nelson, WA, Fox, E, Derse, AR (2005). Ten myths about decision-making capacity. Journal of the American Medical Directors Association, 6(3 Suppl.): S100S104.CrossRefGoogle ScholarPubMed
Folstein, MF, Folstein, SE, McHugh, PR (1975). “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3): 189198.Google Scholar
Joint Centre for Bioethics. (n.d.). Aid to Capacity Evaluation (ACE). http://128.100.72.105/tools/documents/ace.pdfGoogle Scholar
Nasreddine, ZS, Phillips, NA, Bédirian, V, et al. (2005). The Montreal Cognitive Assessment, MoCA: A brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4): 695699.CrossRefGoogle Scholar
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1992). Making Health Care Decisions, Vol. 1. https://repository.library.georgetown.edu/handle/10822/559354Google Scholar
Roth, LH, Meisel, A, Lidz, CW (1977). Tests of competency to consent to treatment. American Journal of Psychiatry, 134(3): 279284.Google ScholarPubMed

References

Alper, E, O’Malley, TA, Greenwald, J (2017). Hospital discharge and readmission. www.uptodate.com/contents/hospital-discharge-and-readmissionGoogle Scholar
American Medical Association. (2021). AMA Principles of Medical Ethics. www.ama-assn.org/about/publications-newsletters/ama-principles-medical-ethicsGoogle Scholar
Barnett, AG, Page, K, Campbell, M, et al. (2013). The increased risks of death and extra lengths of hospital and ICU stay from hospital-acquired bloodstream infections: A case–control study. BMJ Open, 3(10). doi.org/10.1136/bmjopen-2013-003587Google Scholar
Essex, R, Isaacs, D (2018). The ethics of discharging asylum seekers to harm: A case from Australia. Bioethical Inquiry, 15(1): 3944.CrossRefGoogle Scholar
Hill, J, Filer, W (2015). Safety and ethical considerations in discharging patients to suboptimal living situations. AMA Journal of Ethics, 17(6): 506510.Google Scholar
Jankowski, J, Seastrum, T, Swidler, RN, Shelton, W (2009). For lack of a better plan: A framework for ethical, legal, and clinical challenges in complex inpatient discharge planning. HEC Forum, 21(4): 311326.CrossRefGoogle Scholar
Milliken, A, Jurchak, M, Sadovnikoff, N (2018). When societal structural issues become patient problems: The role of clinical ethics consultation. Hastings Center Report, 48(5): 79.CrossRefGoogle ScholarPubMed
Parsi, K (2012). Complex discharges and undocumented patients: Growing ethical concerns. The Journal of Clinical Ethics, 23(4): 299307.Google Scholar
Schlairet, MC (2013). Complex hospital discharges: Justice considered. HEC Forum, 26(1): 6978.CrossRefGoogle Scholar
Swidler, RS, Seastrum, T, Shelton, W (2007). Difficult inpatient discharge decisions: Ethical, legal, and clinical practice issues. The American Journal of Bioethics, 7(3): 2328.CrossRefGoogle ScholarPubMed

References

American Society for Bioethics and Humanities [ASBH], Clinical Ethics Consultation Affairs Committee. (2017). Addressing Patient-Centered Ethical Issues in Health Care: A Case-Based Study Guide. Chicago: ASBH.Google Scholar
Buchanan, AE, Brock, DW (1989). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge University Press.Google Scholar
Cunningham, TV, Chatburn, A, Coleman, C, et al. (2019). Comprehensive quality assessment in clinical ethics. The Journal of Clinical Ethics, 30(3): 284296.CrossRefGoogle ScholarPubMed
Davidson, JE, Aslakson, RA, Long, AC, et al. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1): 103128.Google Scholar
DeMartino, ES, Dudzinkski, D, Doyle, CK, et al. (2017). Who decides when a patient can’t? Statutes on alternate decision makers. New England Journal of Medicine, 376(15): 14781482.Google Scholar
Harris, KW, Cunningham, TV, Hester, DM, et al. (2020, November). Comparison is not a zero-sum game: Exploring advanced measures of healthcare ethics consultation. AJOB Empirical Bioethics E-pub.CrossRefGoogle Scholar
Homan, ME (2018). Factors associated with the timing and patient outcomes of clinical ethics consultation in a Catholic health care system. The National Catholic Bioethics Quarterly, 18(1): 7192.CrossRefGoogle Scholar
Kon, AA, Davidson, JE, Morrison, W, Danis, M, White, DB. (2016). Shared decision making in intensive care units: An American college of critical care medicine and American Thoracic Society policy statement. Critical Care Medicine, 44(1): 188201.CrossRefGoogle ScholarPubMed
Pope, TM, Bennett, J, Carson, SS, et al. (2020). Making medical treatment decisions for unrepresented patients in the ICU: An official American Thoracic Society/American Geriatrics Society policy statement. American Journal of Respiratory and Critical Care Medicine, 201(10): 11821192.Google Scholar
Shalowitz, DI, Garrett-Mayer, E, Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5): 493497.CrossRefGoogle ScholarPubMed
Welch, LC, Teno, JM, Mor, V (2005). End-of-life care in black and white: Race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society, 53(7): 11451153.Google Scholar
Wendler, D, Rid, A (2011). Systematic review: The effect on surrogates of making treatment decisions for others. Annals of Internal Medicine, 154(5): 336346.Google Scholar

References

Cruzan v. Director, Missouri Department of Health. (1990). 110 S.Ct. 2841.Google Scholar
Gostin, LO (2005). Ethics, the constitution, and the dying process: The case of Theresa Marie Schiavo. Journal of the American Medical Association, 293(19): 24032407.CrossRefGoogle ScholarPubMed
Hammes, BJ, Rooney, BL, Gundrun, JD (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7): 12491255.Google Scholar
Hunt, LM (2019). Beyond cultural competence: Applying humility to clinical settings. In Oberlander, J et al., eds., The Social Medicine Reader, 3rd ed., vol. II. Durham, NC: Duke University Press, 127131.Google Scholar
Lehmann, CU, Petersen, P, Bhatia, H, Berner, ES, Goodman, KW (2019). Advance directives and code status information exchange: A consensus proposal for a minimum set of attributes. Cambridge Quarterly of Healthcare Ethics, 28(1): 178185.CrossRefGoogle ScholarPubMed
Moskop, JC (2016). Ethics and Health Care: An Introduction. Cambridge University Press.CrossRefGoogle Scholar
National Hospice and Palliative Care Organization. (n.d.). Caring Connections. www.caringinfo.org/.Google Scholar
POLST: Portable Medical Orders. (n.d.). POLST State Programs. https://polst.org/state-programs/.Google Scholar
In re Quinlan (1976). 70 N.J. 10, 355 A.2d 647.Google Scholar
Wolf, SM, Berlinger, N, Jennings, B (2015). Forty years of work on end of life care – from patients’ rights to systemic reform. New England Journal of Medicine, 372(7): 678682.CrossRefGoogle ScholarPubMed
Yadav, KN, Gabler, NB, Cooney, E, et al. (2017). Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Affairs (Millwood), 36(7): 12441251.CrossRefGoogle ScholarPubMed

References

American Medical Association. (1999). Medical futility in end-of-life care: Report of the Council on Ethical and Judicial Affairs. JAMA, 281(10): 937941.CrossRefGoogle Scholar
Bosslet, GT, Pope, TM, Rubenfeld, GD, et al. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11): 13181330.CrossRefGoogle ScholarPubMed
Cunningham, TV, Scheunemann, LP, Arnold, RM, White, D (2018). How do clinicians prepare family members for the role of surrogate decision-maker? Journal of Medical Ethics, 44(1): 2126.CrossRefGoogle ScholarPubMed
Joseph, R (2011). Hospital policy on medical futility: Does it help in conflict resolution and ensuring good end-of-life care? Annals of the Academy of Medicine, Singapore, 40(1): 1925.CrossRefGoogle ScholarPubMed
Luce, JM (2010). A history of resolving conflicts over end-of-life care in intensive care units in the United States. Critical Care Medicine, 38(8): 16231629.CrossRefGoogle ScholarPubMed
Pope, TM (2007). Medical futility statutes: No safe harbor to unilaterally refuse life-sustaining medical treatment. Tennessee Law Review, 75(1): 181.Google Scholar
Pope, TM (2010). Surrogate selection: An increasingly viable, but limited, solution to intractable futility disputes. St. Louis University Journal of Health Law and Policy, 3(2): 183252.Google Scholar
Pope, TM (2017). Brain death forsaken: Growing conflict and new legal challenges. Journal of Legal Medicine, 37(3–4): 265324.Google Scholar
Rosoff, PM (2013). Institutional futility policies are inherently unfair. HEC Forum, 25(3): 191209.Google Scholar
Schneiderman, LJ, Jecker, NS (2011). Wrong Medicine: Doctors, Patients, and Futile Treatment, 2nd ed. Baltimore, MD: Johns Hopkins University Press.CrossRefGoogle Scholar
Truog, R, Brett, AS, Frader, J (1992). The problem with futility. New England Journal of Medicine, 326(23): 15601564.Google Scholar
Wilkinson, DJ, Savulescu, J (2011). Knowing when to stop: Futility in the ICU. Current Opinions in Anaesthesiology, 24(2): 160165.CrossRefGoogle ScholarPubMed
Zier, LS, Burack, JH, Micco, G, Chipman, AK, Frank, JA, White, DB (2009). Surrogate decision makers’ responses to physicians’ predictions of medical futility. Chest, 136(1): 110117.CrossRefGoogle ScholarPubMed

References

Adams, ZM, Fins, JJ (2017) The historical origins of the vegetative state: Received wisdom and the utility of the text. Journal of the History of the Neurosciences, 26(2): 140153.CrossRefGoogle ScholarPubMed
Classen, J, Doyle, K, Matory, A, et al. (2019). Detection of brain activation in unresponsive patients with acute brain injury. New England Journal of Medicine, 380(26): 24972505.Google Scholar
Edlow, BL, Fins, JJ (2018). Assessment of covert consciousness in the intensive care unit: Clinical and ethical considerations. Journal of Head Trauma and Rehabilitation, 33(6): 424434.CrossRefGoogle ScholarPubMed
Fins, JJ (2015). Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York: Cambridge University Press.CrossRefGoogle Scholar
Fins, JJ (2019a). Disorders of consciousness in clinical practice: Ethical, legal and policy considerations. In Posner, JP, Saper, CB, Claussen, J, Schiff, ND, eds., Plum and Posner’s Diagnosis of Stupor and Coma, 5th ed. New York: Oxford University Press, 449477.Google Scholar
Fins, JJ (2019b). Disorders of consciousness, Past, present, and future. Cambridge Quarterly of Healthcare Ethics, 28(4): 603615.Google Scholar
Fins, JJ (2019c). When no one notices: Disorders of consciousness and the chronic vegetative state. The Hastings Center Report, 49(4): 1417.CrossRefGoogle ScholarPubMed
Fins, JJ (2020). Cruzan and the other evidentiary standard: A reconsideration of a landmark case given advances in the classification of disorders of consciousness and the evolution of disability law. Southern Methodist University Law Review, 73(1): 91118.Google Scholar
Fins, JJ, Bernat, JL (2018). Ethical, palliative, and policy considerations in disorders of consciousness. Neurology, 91(10): 471475.CrossRefGoogle ScholarPubMed
Fins, JJ, Pohl, BR (2015). Neuro-palliative care and disorders of consciousness. In Hanks, G, Cherny, NI, Christakis, NA, Fallon, M, Kassa, S, Portenoy, RK, eds., Oxford Textbook of Palliative Medicine, 5th ed. Oxford University Press, 285291.CrossRefGoogle Scholar
Giacino, JT, Ashwal, S, Childs, N, et al. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58(3): 349353.CrossRefGoogle ScholarPubMed
Giacino, JT, Fins, JJ, Laureys, S, Schiff, ND (2014). Disorders of consciousness after acquired brain injury: The state of the science. Nature Reviews Neurology, 10(2): 99114.Google Scholar
Giacino, JT, Katz, DI, Schiff, ND, et al. (2018). Practice guideline: Disorders of consciousness. Neurology, 91(10): 450460.CrossRefGoogle ScholarPubMed
Jennett, B, Plum, F (1972). Persistent vegetative state after brain damage: A syndrome in search of a name. Lancet, 1(7753): 734737.CrossRefGoogle ScholarPubMed
Multi-Society Task Force on PVS. (1994). Medical aspects of the persistent vegetative state (Parts 1 and 2). New England Journal of Medicine, 330(21): 14991508 and 330(22): 1572–1579.CrossRefGoogle Scholar
Schiff, ND (2015). Cognitive motor dissociation following severe brain injury. JAMA Neurology, 72(12): 14131415.Google Scholar
Schiff, ND, Fins, JJ (2016). Brain death and disorders of consciousness. Current Biology, 26(13): R572R576.CrossRefGoogle ScholarPubMed

References

American College of Obstetricians and Gynecologists Committee on Ethics. (2007; reaffirmed 2019). ACOG Committee Opinion #385: The limits of conscientious refusal in reproductive medicine. Obstetrics and Gynecology, 110(5): 12031208.CrossRefGoogle Scholar
American College of Obstetricians and Gynecologists Committee on Ethics. (2016, reaffirmed 2019). ACOG Committee Opinion #664: Refusal of medically recommended treatment during pregnancy. Obstetrics and Gynecology, 127(6): 11891190.Google Scholar
Faden, RR, Kass, N, McGraw, D (1996). Women as vessels and vectors: Lessons from the HIV epidemic. In Wolf, SM, ed., Feminism and Bioethics: Beyond Reproduction. New York: Oxford University Press, 252281.CrossRefGoogle Scholar
Layne, L (2003). Motherhood Lost: A Feminist Account of Pregnancy Loss in America. New York: Routledge.Google Scholar
Little, MO (2008). Abortion and the margins of personhood. Rutgers Law Journal, 39: 331348.Google Scholar
Little, MO, Lyerly, AD, Mitchell, LM, et al. (2008). Mode of delivery: Toward responsible inclusion of patient preferences. Obstetrics and Gynecology, 112(4): 913918.CrossRefGoogle ScholarPubMed
Lyerly, AD, Gates, E, Cefalo, RC, Sugarman, J (2001). Toward the ethical evaluation and use of maternal-fetal surgery. Obstetrics and Gynecology, 98(4): 689697.Google ScholarPubMed
Mahowald, MB (1995). As if there were fetuses without women: A remedial essay. In Callahan, J, ed., Reproduction, Ethics and the Law: Feminist Perspectives. Bloomington: Indiana University Press, 199218.Google Scholar

References

Batton, DG, DeWitte, DB, Pryce, CJ (2011). One hundred consecutive infants born at 23 weeks and resuscitated. American Journal of Perinatology, 28(4): 299304.Google Scholar
Donohue, P, Boss, R, Aucott, S, Keene, E, Teague, P (2010). The impact of neonatologists’ religiosity and spirituality on health care delivery for high-risk neonates. Journal of Palliative Medicine, 13(10): 12191224.CrossRefGoogle ScholarPubMed
Hsiao, CC, Tsao, LY, Chen, HN, Chiu, HY, Chang, WC (2009). Changing clinical presentations and survival pattern in trisomy 18. Pediatrics and Neonatology, 50(4): 147151.Google Scholar
Janvier, A, Okah, F, Farlow, B, Lantos, JD (2011). An infant with trisomy 18 and a ventricular septal defect. Pediatrics, 127(4): 754759.Google Scholar
Kaempf, JW, Tomlinson, MW, Campbell, B, Ferguson, L, Stewart, VT (2009). Counseling pregnant women who may deliver extremely premature infants: Medical care guidelines, family choices, and neonatal outcomes. Pediatrics, 123(6): 15091515.Google Scholar
McDougall, R, Gillam, L, Spriggs, M, Delany, C (2018). The zone of parental discretion and the complexity of paediatrics: A response to Alderson. Clinical Ethics, 13(4): 172174.Google Scholar
McGraw, MP, Perlman, JM (2008). Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: Potential factors influencing a changing dynamic. Pediatrics, 121(6): 11061110.Google Scholar
Norman, M, Hallberg, B, Abrahamsson, T, et al. (2019). Association between year of birth and 1-year survival among extremely preterm infants in Sweden during 2004–2007 and 2014–2016. JAMA, 321(12): 11881199.CrossRefGoogle ScholarPubMed
Rosa, RF, Rosa, RC, Lorenzen, MB, et al. (2011). Trisomy 18: Experience of a reference hospital from the south of Brazil. American Journal of Medical Genetics A, 155A(7): 15291535.CrossRefGoogle ScholarPubMed
Rysavy, R, Li, L, Bell, EF, et al. (2015). Between-hospital variation in treatment and outcomes in extremely preterm infants. New England Journal of Medicine, 372(19): 18011811.Google Scholar
Tyson, JE, Parikh, NA, Langer, J (2008). Intensive care for extreme prematurity – moving beyond gestational age. New England Journal of Medicine, 358: 16721681.CrossRefGoogle ScholarPubMed

References

Beauchamp, TL, Childress, JF (2012). Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press.Google Scholar
Buchanan, A, Brock, D (1990). Deciding for Others: The Ethics of Surrogate Decision Making. New York: Oxford University Press.Google Scholar
Diekema, DS (2004). Parental refusals of medical treatments: The harm principle as threshold for state intervention. Theoretical Medicine and Bioethics, 25(4): 243264.Google Scholar
Diekema, DS (2020). Adolescent brain development and medical decision-making. Pediatrics, 146(2, Suppl. 1): S18S24.CrossRefGoogle ScholarPubMed
Feinberg, J (1984). Harm to Others: The Moral Limits of the Criminal Law. New York: Oxford University Press.Google Scholar
Katz, AL, Webb, SA, The American Academy of Pediatrics Committee on Bioethics. (2016). Technical report: Informed consent in decision-making in pediatric practice. Pediatrics, 138(2): e20161485.Google Scholar
Menikoff, J (2002). Law & Bioethics: An Introduction. Washington, DC: Georgetown University Press.Google Scholar
Nelson, HL, Nelson, JL (1995). The Patient in the Family. New York: Routledge.Google Scholar
Ross, LF (1998). Children, Families, and Health Care Decision Making. New York: Oxford University Press.CrossRefGoogle Scholar
Ross, LF (2019). Better than best (interest standard) in pediatric decision making. Journal of Clinical Ethics, 30(3): 183195.Google Scholar
Ross, LF, Blustein, J, Clayton, EW (2009). Adolescent decision making. Cambridge Quarterly of Healthcare Ethics, 18(3): 302322, 18(4): 432–442.Google Scholar
Salter, E (2012). Deciding for a child: A comprehensive analysis of the best interest standard. Theoretical Medicine and Bioethics, 33(3): 179198.CrossRefGoogle Scholar

References

Connectome Programs | Blueprint (NIH). (n.d.) https://neuroscienceblueprint.nih.gov/human-connectome/connectome-programs (accessed November 23, 2020).Google Scholar
Illes, J, Bird, SJ (2006). Neuroethics: A modern context for ethics in neuroscience. Trends in Neurosciences, 29(9): 511517.CrossRefGoogle ScholarPubMed
Jacobs, BS, Poggesi, A, Terry, JB (2017). Max-ICH score: Can it prevent self-fulfilling prophecy in ICH? Neurology, 89(5): 417418.CrossRefGoogle ScholarPubMed
Robison, JE (2016, March 18). An experimental autism treatment cost me my marriage. https://well.blogs.nytimes.com/2016/03/18/an-experimental-autism-treatment-cost-me-my-marriage/Google Scholar
Singh, I (2006). Will the “real boy” please behave: Dosing dilemmas for parents of boys with ADHD. American Journal of Bioethics and Humanities, 5(3): 3447.CrossRefGoogle Scholar
Tovino, SA (2007). Functional neuroimaging information: A case for neuro exceptionalism? Scholarly Works, 76. https://scholars.law.unlv.edu/facpub/76Google Scholar

References

AAP Committee on Bioethics, Committee on Genetics, and the ACMG Social, Ethical and Legal Issues Committee. (2013). Ethical and policy issues in genetic testing and screening of children. Pediatrics, 131(3): 620622.CrossRefGoogle Scholar
Centers for Disease Control and Prevention. (n.d.). Hereditary breast and ovarian cancer: BRCA 1 and BRCA 2. www.cdc.gov/genomics/disease/breast_ovarian_cancer/genes_hboc.htm (accessed September 1, 2020).Google Scholar
Kalia, SS, Adelman, K, Bale, SJ, et al. (2017). Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): A policy statement of the American College of Medical Genetics and Genomics. Genetics in Medicine, 19(2): 249255.CrossRefGoogle ScholarPubMed
May, T (2009). Bioethics in a Liberal Society. Baltimore: Johns Hopkins University Press.Google Scholar
May, T (2012). Re-thinking clinical risk for DNA sequencing. American Journal of Bioethics, 12(10): 2426.CrossRefGoogle Scholar
May, T (2015). On the justifiability of ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Journal of Law, Medicine and Ethics, 43(1): 134142.CrossRefGoogle ScholarPubMed
May, T, Fullerton, SM (2021). Ethical considerations in the use of direct-to-consumer genetic testing for adopted persons. Adoption Quarterly, 24(1): 89100.CrossRefGoogle Scholar
May, T, Spellecy, R (2006). Autonomy, full information, and genetic ignorance in reproductive medicine. Monist, 6(1): 466481.CrossRefGoogle Scholar
Raz, J (1990). Practical Reason and Norms. Princeton University Press.Google Scholar
Richards, S, Aziz, N, Bale, S, et al. (2015). Standards and guidelines for the interpretation of sequence variants: A joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genetics in Medicine, 17(5): 405424.CrossRefGoogle ScholarPubMed
Ross, LF, Saal, HM, Davis, KL, et al. (2013). Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3): 234245.CrossRefGoogle ScholarPubMed
Roberts, JS, Robinson, JO, Diamond, PM, et al. (2018). Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: Findings from the MedSeq Project. Genetics in Medicine, 20(9): 10691076.CrossRefGoogle ScholarPubMed
Tandy-Connor, S, Guiltinan, J, Krempeley, K, et al. (2018). False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genetics in Medicine, 20(12): 15151521.Google Scholar
Welch, HG, Burke, W (2015, April 27). Op-ed: Why whole-genome testing hurts more than it helps. Los Angeles Times. www.latimes.com/opinion/op-ed/la-oe-welch-problems-predictive-medicine-20150428-story.htmlGoogle Scholar
Wolf, SM, Annas, GJ, Elias, S (2013). Respecting patient autonomy in clinical genomics: New recommendations on incidental findings go astray. Science, 340(6136): 10491050.CrossRefGoogle Scholar

References

ACS NSQIP Surgical Risk Calculator. (2020). https://riskcalculator.facs.org/RiskCalculator/PatientInfo.jsp (accessed March 2020).Google Scholar
Bernard, HR, Hartman, TW. (1993). Complications after laparoscopic cholecystectomy. American Journal of Surgery, 165(4): 533535.CrossRefGoogle ScholarPubMed
Bosk, C. (1979). Forgive and Remember. University of Chicago Press.Google Scholar
Cooper, Z, Mitchell, SL, Gorges, RJ, Rosenthal, RA, Lipsitz, SR, Kelley, AS (2015). Predictors of mortality up to 1 year after emergency major abdominal surgery in older adults. Journal of the American Geriatrics Society, 63(12): 25722579.CrossRefGoogle ScholarPubMed
Karpowicz, L, Bell, E, Racine, E (2016). Ethics oversight mechanisms for surgical innovation: A systematic and comparative review of arguments. Journal of Empirical Research on Human Research Ethics, 11(2): 135164.CrossRefGoogle ScholarPubMed
Kruser, JM, Taylor, LJ, Campbell, TC, et al. (2017). “Best case/worst case”: Training surgeons to use a novel communication tool for high-risk acute surgical problems. Journal of Pain and Symptom Management, 53(4): 711–719 e715.CrossRefGoogle ScholarPubMed
Langerman, A, Siegler, M, Angelos, P (2016). Intraoperative decision making: The decision to perform additional, unplanned procedures on anesthetized patients. Journal of the American College of Surgeons, 222(5): 956960.Google Scholar
Ramirez, PT, Frumovitz, M, Pareja, R, et al. (2018). Minimally invasive versus abdominal radical hysterectomy for cervical cancer. New England Journal of Medicine, 379(20): 18951904.Google Scholar
Reijers, W, Wright, D, Brey, P, et al. (2018). Methods for practising ethics in research and innovation: A literature review, critical analysis and recommendations. Science and Engineering Ethics, 24(5): 14371481.CrossRefGoogle ScholarPubMed
Taylor, LJ, Nabozny, MJ, Steffens, NM, et al. (2017). A framework to improve surgeon communication in high-stakes surgical decisions: Best case/worst case. JAMA Surgery, 152(6): 531538.CrossRefGoogle ScholarPubMed
US Food & Drug Administration. (2019). Caution when using robotically-asssisted surgical devices in women’s health including mastectomy and other cancer-related surgeries: FDA safety communication. www.fda.gov/medical-devices/safety-communications/caution-when-using-robotically-assisted-surgical-devices-womens-health-including-mastectomy-and (accessed March 15, 2020).Google Scholar

References

Appelbaum, P, Gutheil, T (1992). Clinical Handbook of Psychiatry and the Law, 2nd ed. Baltimore: Williams & Wilkins.Google Scholar
Buchman, DZ, Lynch, MJ. (2018). An ethical bone to PICC: Considering a harm reduction approach for a second valve replacement for a person who uses drugs. American Journal of Bioethics, 18(1): 7981.CrossRefGoogle ScholarPubMed
Committee on the Science of Changing Behavioral Health Social Norms; Board on Behavioral, Cognitive, and Sensory Sciences; Division of Behavioral and Social Sciences and Education; National Academies of Science, Engineering, and Medicine. (2016). Ending Discrimination against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: National Academies Press.Google Scholar
Gabbard, G, Roberts, LW, Crisp-Han, H, Ball, V, Hobday, G, Rachal, F (2012). Professionalism in Psychiatry. Washington, DC: American Psychiatric Press.Google Scholar
Geppert, C, Cohen, M, Bourgeois, J, Peterson, M (2016). Bioethical challenges for psychiatrists: Determination of decisional capacity. Psychiatric Times, 33(7).Google Scholar
Livingston, R, Wu, C, Mu, K, Coffey, MJ (2018). Regulation of electroconvulsive therapy: A systematic review of US state laws. Journal of ECT, 34(1): 6068.Google Scholar
Owens, PL, Fingar, KR, McDermott, KW, Muhuri, PK, Heslin, KC (2019). Inpatient stays involving mental and substance use disorders, 2016: Statistical brief #249. In Health Care Cost and Utilization Project. Rockville, MD: Agency for Healthcare Research and Quality.Google Scholar
Radden, J, Sadler, J (2010). The Virtuous Psychiatrist: Character Ethics in Psychiatric Practice. New York: Oxford University Press.Google Scholar
Swanson, JW, McCrary, SV, Swartz, MS, Elbogen, EB, Van Dorn, RA (2006). Superseding psychiatric advance directives: Ethical and legal considerations. Journal of the American Academy of Psychiatry and Law, 34(3): 385394.Google Scholar
Testa, M, West, SG (2010). Civil commitment in the United States. Psychiatry (Edgmont), 7(10): 3040.Google Scholar
Treloar, A, Crugel, M, Prasanna, A, et al. (2010). Ethical dilemmas: Should antipsychotics ever be prescribed for people with dementia? British Journal of Psychiatry, 197(2): 8890.Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×