[Draft Syllabus Subject to Change]

Transcription

1 [Draft Syllabus Subject to Change] Government 94gk: The Politics and Ethics of Medical Care Spring 2017 Instructor: Gabriel Katsh, PhD Lecturer, Department of Government Office hours: sign up online at bit.ly/gabekatsh Meeting Time: Thursdays, 3-5pm, in CGIS K-107 (but note that the first meeting will be on Tuesday, January 24 th,, 4-5pm, in CGIS K-401). Enrollment and First Meeting: To enroll in the class, you must enter the Government Department lottery (see by submitting a hard-copy lottery form to the Department s undergraduate office by 6pm on Wednesday, January 25 th. Lottery results will be released the evening of Thursday, January 26 th. To accommodate the lottery, the class will meet for the first time on Tuesday, January 24 th. All interested students are expected to attend that meeting. The class will not meet on Thursday, January 26 th. Overview This course is an introduction to medical ethics and the ways in which political theory can inform our understanding of the moral and political dimensions of medical care. Using case studies as a launching point, we will explore ideas about autonomy, paternalism, beneficence, and distributive justice, and their application to issues such as informed consent, euthanasia, public health policies, the right to refuse care, the distribution of scarce resources, the health effects of inequality, and conflicts between patient rights and the public good. Readings include classics of moral and political philosophy, writings by contemporary medical ethicists, Supreme Court decisions, and some empirical and historical studies. Requirements and Grading As this is a seminar, the main requirement is to come to class prepared and participate actively in class discussions. For 6 out of the 12 weeks, you are expected to write short responses to the readings (approximately words) that will be circulated among the class. These responses are due 24 hours before class meets, to allow your fellow students and the instructor to read and reflect on them. They will be graded on a, +, - scale. Your participation in class, which includes completing the short responses, will count for 40% of your final grade. There will be a short midterm quiz on March 30 th

2 to evaluate your understanding of the philosophical issues covered in class, which will count for 20% of your final grade. The remaining 40% of your grade will be determined by a seminar paper (approx pages) on one of the topics raised in this course or another topic related to medical ethics, to be chosen in consultation with the instructor. A short (1-2 page) paper proposal is due to the instructor by the last day of class (April 20 th ), and the paper itself is due during exam period, on a date to be determined by the Registrar s Office. Absences Because of the seminar format, there is no way to make up a missed class, and since we only meet 12 times throughout the semester, your attendance at each and every meeting is crucial. Absences will be excused only in emergency situations (e.g., hospitalization) and will require documentation. Unexcused absences will have a severely negative impact on your grade. Please note that job interviews, extracurricular activities, and athletic games are not considered valid reasons to miss class. Collaboration Policy Discussion and the exchange of ideas are essential to academic work. For assignments in this course, you are encouraged to consult with your classmates on the choice of paper topics and to share sources. You may find it useful to discuss your chosen topic with your peers, particularly if you are working on the same topic as a classmate. However, you should ensure that any written work you submit for evaluation is the result of your own research and writing and that it reflects your own approach to the topic. You must also adhere to standard citation practices and properly cite any books, articles, websites, lectures, etc. that have helped you with your work. If you received any help with your writing (feedback on drafts, etc.), you must also acknowledge this assistance. Please speak with the instructor if you have any questions about collaboration. Course Readings The readings for this course are a mix of philosophical writings and case studies, with a few court cases and empirical/historical studies as well. Some of the philosophical writings are neutral explorations of theories, and some take specific, occasionally extreme, positions on a particular topic. The readings have been chosen to stimulate discussion and encourage you to critically examine your own views. None is intended to convince you to adopt a particular stance on any issue (nor, for that matter, does the instructor necessarily agree with the views put forth). The following books are required reading and will be on reserve at Lamont: 1. Tom L. Beauchamp and James F. Childress. Principles of Biomedical Ethics, 7 th edition. New York: Oxford University Press, 2012.

3 2. Ruth Macklin. Mortal Choices: Ethical Dilemmas in Modern Medicine. Boston: Houghton Mifflin, Michael Marmot. The Status Syndrome: How Social Standing Affects Our Health and Longevity. New York: Henry Holt and Company, T.R. Reid. The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care. New York: Penguin, [Make sure to use the 2010 edition, with the afterword on the Affordable Care Act.] All these books except Mortal Choices are available for purchase at the Coop. Mortal Choices is currently out of print, but there are many used copies available on Amazon.com. Recommended (required parts will be available online on the course Canvas site): 1. Robert M. Veatch. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. New York: Oxford University Press, John Stuart Mill. Utilitarianism and On Liberty. Malden, MA: Wiley-Blackwell, [Other editions of On Liberty are fine; free editions are available online.] The remaining readings will be available for download on the course Canvas site. Summary of Topics to be Covered Week I: Introduction [Jan 24 see note above about special time/location] Week II: The Goal(s) of Medicine [Feb 2] Week III: Background philosophical perspectives: liberalism, utilitarianism, principlism, and virtue ethics [Feb 9] Week IV: The role of the state in medical care [Feb 16] Week V: Autonomy I: Freedom, Self-Determination, and Competency [Feb 23] Week VI: Autonomy II: Consent, Honesty, and Deception [March 2] Week VII: The Conflicting Obligations of Physicians [March 9] Week VIII: Beneficence and Paternalism [March 23] Week IX: The Ethics of Health Promotion [March 30] Week X: Euthanasia, Physician-Assisted Suicide, and the Ethics and Politics of End-of-Life Care [April 6] Week XI: Justice and Health Care I: Scarcity, Inequality, and Distributive Justice [April 13] Week XII: Justice and Health Care II: The Health Effects of Inequality [April 20]

4 Because the semester is only 12 weeks long, we will not have time to delve into all of the diverse and growing areas of medical ethics, or bioethics more generally. Topics that we will unfortunately not have time to cover include the ethics of bioengineering, genetic enhancement, and stem cell research; abortion; research and experimentation with human subjects; and the rights of parents to make medical decisions about their children. Students in the course may choose to address any of these topics in their seminar papers, after consultation with the instructor. Schedule of Topics and Readings Week I: Introduction After reviewing the course goals and expectations, we will discuss the types of cases to be considered in the course and talk about the field of medical ethics generally. None Robert Veatch. Medical Ethics: An Introduction in Medical Ethics, 2 nd edition, ed. Robert Veatch. Sudbury, Mass.: Jones and Bartlett, Carol Levine. Analyzing Pandora s Box: The History of Bioethics in The Ethics of Bioethics ed. Lisa Eckenwiler and Felicia Cohn. Baltimore: Johns Hopkins University Press, Week II: The Goal(s) of Medicine What are the ends that medicine seeks to promote? Is the only goal to treat disease? Is medicine a purely scientific enterprise? Should we view medicine s successes based on its effectiveness in normalizing biomedical test results, or whether it allows people to live fuller, more autonomous lives? What are the ethical values implicit in medical care? Macklin, Mortal Choices, Chapter 1. Veatch, Patient, Heal Thyself, pp , 33-41,

5 Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books, 1988, pp Charles Rosenberg, Framing Disease: Illness, Society, and History in Charles Rosenberg and Janet Golden (Eds.), Framing Disease: Studies in Cultural History. New Brunswick, NJ: Rutgers University Press, 1992, pp. xiii-xxvi. Leon Kass, Regarding the End of Medicine and the Pursuit of Health The Public Interest, No. 40 (Summer 1975): Eric Cassell. The Nature of Suffering and the Goals of Medicine, 2 nd edition. Chapter 7-8. Mark Sullivan, The New Subjective Medicine: Taking the Patient s Point of View on Health Care and Health Social Science and Medicine, vol. 56 (2003): Laura Hillenbrand, A Sudden Illness. The New Yorker, July 7, 2003, pp Recommended: Eric Cassell. The Nature of Suffering and the Goals of Medicine, remaining chapters. Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition, remainder. Christopher Boorse. On the Distinction between Disease and Illness Philosophy and Public Affairs vol. 5, no. 1 (Fall 1975). Charles Rosenberg. Disease and Social Order in America: Perceptions and Expectations The Milbank Quarterly, vol. 64 (1986): pp Week III: Background Philosophical Perspectives We will look at different philosophies that ground ethical thinking in medicine, including liberalism, utilitarianism, principlism, and virtue ethics. What is the most convincing foundation on which to make ethical judgments in medicine? Do we need a comprehensive ethical theory in order to make ethical decisions? Required Reading Macklin, Mortal Choices, Chapter 2. Beauchamp and Childress, Principles of Biomedical Ethics, Chapters 1 and 9.

6 Jonathan Baron. Against Bioethics. Cambridge, MA: The MIT Press, Chapter 2 ( Bioethics vs. Utilitarianism ). K. Danner Clouser. Common Morality as an Alternative to Principlism Kennedy Institute of Ethics Journal, Vol. 5, No. 3 (1995): Edmund Pellegrino, "Toward a Virtue-Based Normative Ethics for the Health Professions" Kennedy Institute of Ethics Journal, Vol. 5, No. 3 (1995): Berlin, Isaiah. Two Concepts of Liberty, in The Proper Study of Mankind: An Anthology of Essays. Edited by Henry Hardy and Roger Hausheer. New York: Farrar, Straus and Giroux, Available online at liberty.pdf. Stephen L. Darwall. Theories of Ethics, in A Companion to Applied Ethics, edited by R. G. Frey and Christopher Wellman. Malden, MA: Blackwell, 2003, pp Ezekiel Emanuel. The Ends of Human Life: Medical Ethics in a Liberal Polity. Cambridge: Harvard University Press, Week IV: The Role of the State in Medical Care The state plays a pervasive role in medical care: government policies and laws shape the rights of patients, the nature of the doctor patient relationship, the allocation of medical services, and the availability and accessibility of medication. We will look at some of the obvious and not-so-obvious ways in which the government influences medical care, and discuss their ethical implications. T. R. Reid. The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care. New York: Penguin Books, Pages 1-142, , Peter Temin. The Origin of Compulsory Drug Prescriptions. Journal of Law and Economics, Vol. 22, No. 1 (1979): Cruzan v. Director, Missouri Department of Public Health, 497 U.S. 261 (1990) (excerpt)

7 Charles H. Baron. Licensure of Health Care Professionals: The Consumer s Case for Abolition. American Journal of Law and Medicine, Vol. 9, No. 3 (Fall 1983): Michael Moran. Governing the Health Care State: A Comparative Study of the United Kingdom, United States, and Germany. Manchester, UK: Manchester University Press, David F. Musto, The American Disease: Origin of Narcotic Control, 3 rd edition. New York: Oxford University Press, Peter Temin. Taking Your Medicine: Drug Regulation in the United States. Cambridge, Mass.: Harvard University Press, Claus Wendt et al. How Do Europeans Perceive Their Healthcare System? Patterns of Satisfaction and Preference for State Involvement in the Field of Healthcare European Sociological Review, Vol. 26, No. 10 (2010): Week V: Autonomy I: Freedom, Self-Determination, and Competency Autonomy is one of the central tenets of modern medical ethics, but the Hippocratic Oath doesn t even hint at it. Where do our modern notions of autonomy come from? What are the limits of autonomy, and when should doctors view patients as incapable of making decisions about their own medical care? Macklin, Mortal Choices, Chapter 6. John Stuart Mill, On Liberty, chapters 1, 3, 4, 5. Beauchamp and Childress, Principles of Biomedical Ethics, pp M. Sutrop. Viewpoint: How to Avoid a Dichotomy between Autonomy and Beneficence: From Liberalism to Communitarianism and Beyond Journal of Internal Medicine, Vol. 269, No. 4 (April 2011): Gerald Dworkin. The Theory and Practice of Autonomy. New York: Cambridge University Press, Chapters 1-2.

8 Alfred Tauber. Patient Autonomy and the Ethics of Responsibility. Cambridge, MA: MIT Press, Edmund Pellegrino. Patient and Physician Autonomy: Conflicting Rights and Obligations in the Physician Patient Relationship Journal of Contemporary Health Law and Policy, Vol. 10 (1994): Week VI: Autonomy II: Consent, Honesty, and Deception Medical ethicists often stress the importance of gaining informed consent for medical procedures as a way of respecting patient autonomy. Informed consent requires providing patients with accurate, detailed information about their conditions and the risks and benefits of particular modes of treatment. However, the usefulness of informed consent has been questioned by those who think patients are incapable of making truly informed decisions about complex medical procedures; by those who see it as corroding trust within the doctor patient relationship; and by those who see it as counterproductive under certain circumstances to provide patients with the full truth about their conditions. Is informed consent a useful tool, or should we find better ways to respect patient autonomy? Are our notions about gaining informed consent from patients a reflection of universal values of respecting persons, or are they products of a particular culture and its way of viewing individual rights? Macklin, Mortal Choices, Chapter 3. Beauchamp and Childress, Principles of Biomedical Ethics, pp Veatch, Patient, Heal Thyself, pp C.A. Vassilas and J. Donaldson. Telling the Truth: What Do General Practitioners Say to Patients with Dementia or Terminal Cancer? British Journal of General Practice, Vol. 48 (1998): Neil C. Manson and Onora O Neill. Rethinking Informed Consent in Bioethics. Cambridge, UK: Cambridge University Press, Chapters 1 & 4. H. Bozcuk, et al. Does Awareness of Diagnosis Make Any Difference to Quality of Life? Determinants of Emotional Functioning in a Group of Cancer Patients in Turkey. Supportive Care in Cancer, Vol. 10 (2002):

9 Antonella Surbone. Letter from Italy: Truth Telling to the Patient and accompanying editorial by Edmund Pellegrino ( Is Truth Telling to the Patient a Cultural Artifact? ). Journal of the American Medical Association, Vol. 268 (October 1992): , Eugene G. Laforet. The Fiction of Informed Consent. Journal of the American Medical Association, Vol. 235, No. 15 (1976): Neil C. Manson and Onora O Neill. Rethinking Informed Consent in Bioethics. Remaining chapters. Gerald Dworkin. The Theory and Practice of Autonomy. New York: Cambridge University Press, Chapter 7 ( Autonomy and Informed Consent ), pp Louise M. Wallace. Informed Consent to Elective Surgery: The Therapeutic Value? Social Science and Medicine, Vol. 22, No. 1 (1986): Week VII: The Conflicting Obligations of Physicians What are the roles we expect doctors to play besides, or as part of, providing treatment to patients? Should doctors be trying to drive down the cost of medicine by considering factors besides the most scientifically promising treatment for patients? Should doctors be holding back from providing futile treatment, often at a high cost, to patients? And how should we view doctors who use their medical training for non-therapeutic ends are they violating their ethical duties, or possibly helping in a greater cause? Beauchamp and Childress, Principles of Biomedical Ethics, pp Robert Veatch. Case Studies in Medical Ethics. Cambridge, MA: Harvard University Press, 1977, pp Ruth Macklin. Enemies of Patients. New York: Oxford University Press, Chapter 7 ( Physicians as Fiscal Gatekeepers: Rationing at the Bedside ) and Chapter 8 ( Medical Futility: The Limits of Patient Autonomy? ). Pauline Chen. Getting Doctors to Think about Costs The New York Times, March 15,

10 M. Gregg Bloche and Jonathan H. Marks. Doctors and Interrogators at Guantanamo Bay New England Journal of Medicine, Vol. 353 (2005): 6-8; and subsequent letter to the editor (Vol., 353, pp ). Morton E. Winston. AIDS, Confidentiality, and the Right to Know. Public Affairs Quarterly, Vol. 2, No. 2 (1988): Cheryl Plambeck. Divided Loyalties: Legal and Bioethical Considerations of Physician Pregnant Patient Confidentiality and Prenatal Drug Abuse Journal of Legal Medicine, Vol. 23, No. 1 (2002): Week VIII: Beneficence and Paternalism Doctors approach medical problems with a vastly greater understanding than patients of the biological causes of disease and the risks and benefits of treatments. Under what circumstances should doctors overrule the treatment decisions of a patient who may be uninformed or displaying poor judgment? Should doctors rather than patients be making the hard decisions in medical care? What distinguishes paternalism from beneficence? Beauchamp and Childress, Principles of Biomedical Ethics, pp M. S. Komrad. A Defence of Medical Paternalism: Maximising Patients' Autonomy Journal of Medical Ethics 9, no. 1 (1983): Richard Smith, The Discomfort of Patient Power, and subsequent letters to the editor. British Medical Journal 324 (March 2002): , and BMJ 324 (May 2002): George W. Rainbolt. Prescription Drug Laws: Justified Hard Paternalism Bioethics Vol. 3, No. 1 (January 1989): Veatch, Patient, Heal Thyself, pp Ezekiel Emanuel and Linda Emanuel. Four Models of the Physician Patient Relationship. Journal of the American Medical Association, Vol. 267, No. 16 (1992):

11 Edmund D. Pellegrino and David C. Thomasma. For the Patient's Good: The Restoration of Beneficence in Health Care. New York: Oxford University Press, 1988, pp Pellegrino and Thomasma. For the Patient's Good, remainder. Rosemary Carter. Justifying Paternalism Canadian Journal of Philosophy, Vol. 7, No. 1 (1977): Bernard Gert and Charles M. Culver. Paternalistic Behavior Philosophy and Public Affairs, Vol. 6 (Fall 1976): Week IX: The Ethics of Health Promotion If, as Benjamin Franklin said, an ounce of prevention is worth a pound of cure, then it might be better for doctors, and even the state, to encourage healthpromoting behaviors and habits rather than treating and paying for the effects of dangerous or unhealthy lifestyles. However, campaigns to prevent obesity, encourage people to quit smoking, or promote exercise are viewed by some as overly intrusive on people s private lives. How should doctors view their role in telling patients how to live their lives? Should the government be undertaking public health campaigns that criticize legal, if unhealthy, personal behavior? Daniel Wikler. Persuasion and Coercion for Health: Ethical Issues in Government Efforts to Change Life-styles Milbank Memorial Fund Quarterly, Vol. 56, No. 3 (1978): Michelle M. Mello, David M. Studdert, and Troyen A. Brennan. "Obesity the New Frontier of Public Health Law New England Journal of Medicine. Vol. 354, no. 24 (2006), Robert Lustig, et al. Public Health: The Toxic Truth about Sugar Nature, Vol. 482 (Feb. 2012): Michael Fitzpatrick, The Tyranny of Health: Doctors and the Regulation of Lifestyle. New York: Routledge, Chapter 3 ( The Regulation of Lifestyle ). Robert Veatch. Voluntary Risks to Health: The Ethical Issues Journal of the American Medical Association, Vol. 243, No. 1 (1980):

12 Richard H. Thaler and Cass R. Sunstein. Nudge: Improving Decisions about Health, Wealth, and Happiness. New York: Penguin Books, 2009, pp Robert S. Morison. Rights and Responsibilities: Redressing the Uneasy Balance Hastings Center Report, vol. 4, no. 2 (April 1974), 1-4. Leon S. White. How to Improve the Public s Health. New England Journal of Medicine, Vol. 293 (1975): Amitai Etzioni, Individual Will and Social Conditions: Toward an Effective Health Maintenance Policy Annals of the American Academy of Political and Social Science, Vol. 437, No. 1 (1978): Thaler and Sunstein, Nudge, remaining chapters. L.O. Gostin and G.H. Javitt. Health Promotion and the First Amendment: Government Control of the Informational Environment Milbank Quarterly, Vol. 79, No. 4 (2001): Week X: Euthanasia, Physician-Assisted Suicide, and the Ethics and Politics of End-of-Life Care Some of the most controversial issues in medical ethics surround end-of-life care and decisions about how to die. Is euthanasia ethically permissible? Is there an ethical distinction between killing and letting die? Should doctors use their medical knowledge to help terminal patients die peacefully or is that a violation of their ethical duty to respect life? What role should the state play in regulating how people die? Washington v. Glucksberg, 521 U.S. 702 (1997) (excerpt). Beauchamp and Childress, Principles of Biomedical Ethics, pp (through Negligence and the Standard Duty of Care ), Macklin, Mortal Choices, Chapter 5. Ronald Dworkin. Life s Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom. New York: Vintage, Chapter 7 ( Dying and Living ).

13 J. David Velleman. Against the Right to Die. In Ethics in Practice: An Anthology, 3 rd edition, edited by Hugh LaFollette. Malden, MA: Blackwell Publishing, 2007, pp George J. Annas. Culture of Life Politics at the Bedside The Case of Terri Schiavo New England Journal of Medicine, Vol. 352 (2005): Ronald Dworkin et al., Assisted Suicide: The Philosopher s Brief. Reprinted in The New York Review of Books, March 27, Tom Beauchamp. Justifying Physician-Assisted Deaths. In Ethics in Practice: An Anthology, 3 rd edition, edited by Hugh LaFollette. Malden, MA: Blackwell Publishing, 2007, pp Lewis Cohen et al. Accusations of Murder and Euthanasia in End-of-Life Care Journal of Palliative Medicine, Vol. 8, No. 6 (2005): Linda L. Emanuel (Ed.). Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide. Cambridge, MA: Harvard University Press, Week XI: Justice and Health Care I: Scarcity, Inequality, and Distributive Justice How do theories of distributive justice inform our views about access to health-care resources? Is health care like any other scarce commodity, or does it have a unique status? How should scarce health resources be distributed? Are there times when aiming for equality in access to health care might violate other rights? Macklin, Mortal Choices, Chapter 10 Beauchamp and Childress, Principles of Biomedical Ethics, Chapter 7. Shlomi Segall. Is Health Care (Still) Special? Journal of Political Philosophy, Vol. 15, No. 3 (Sept. 2007): Chaoulli v. Quebec (Attorney General), 2005 SCC 35 (2005) (excerpt).

14 Recommended: John Rawls. A Theory of Justice, rev. ed. Cambridge, MA: Belknap Press of Harvard University Press, , 11-24, Norman Daniels, Just Health Care. New York: Cambridge University Press, Chapters 1, 3, 4. Robert Nozick, Anarchy, State, and Utopia. New York: Basic Books, Chapter 7. Week XII: Justice and Health Care II: The Health Effects of Inequality The link between health and inequality goes further than just unequal access to health-care resources: a large body of sociological and epidemiological data suggests that socioeconomic inequality is a cause of poor health. Should this change how we view inequality in our society? What are the political implications of viewing inequality as a cause of morbidity and mortality? Is it the government s job to improve health by promoting equality, or does that exceed the government s legitimate role? Norman Daniels, Bruce P. Kennedy, and Ichiro Kawachi. Why Justice is Good for Our Health: The Social Determinants of Health Inequalities Daedalus, vol. 128, no. 4 (1999): Michael Marmot. The Status Syndrome: How Social Standing Affects Our Health and Longevity. New York: Henry Holt and Company, Introduction, Chapters 1-4, Chapter 10, and Appendix. Friedrich Hayek. The Constitution of Liberty. Chicago: The University of Chicago Press, Chapter 6 ( Equality, Value, and Merit ). Martin Feldstein. Reducing Poverty, not Inequality The Public Interest, No. 137 (Fall 1999). Online at Daniel Wikler. Personal and Social Responsibility for Health Ethics and International Affairs, Vol. 16, No. 2 (Sept. 2002): Robert Nozick. Anarchy, State, and Utopia, Chapter 8.

15 Michael Marmot. The Status Syndrome, Chapters 5-9. Richard G. Wilkinson. Unhealthy Societies: The Afflictions of Inequality. Routledge, London, Paul Farmer. Infections and Inequalities: The Modern Plagues. Berkeley, CA: University of California Press, 1999.