In theory, the tragic mistake in Dr. Scarpetta’s lab might justify withholding information from Bud’s and Jed’s families as an extension of the therapeutic-privilege principle on the grounds that the revelation would likely cause considerable psychological damage and would be unlikely to provide any benefit. If the mistake were truly undiscoverable in the future and psychological distress probable, utilitarian ethicists would argue against disclosure on the grounds that it would do more harm than good.
One should note the difference in this case from one where babies are mistakenly exchanged at birth and the mishap is later discovered. In that situation, withholding the error has considerable practical effects on the victims. They will not know their correct medical histories and may fail to connect with their “adoptive” families. In contrast, no practical harm results from visiting the wrong grave. All the tangible damage in the case of Bud and Jed—such as the cremation and embalming, which have undermined the late men’s wishes—has already been done. Yet juries are likely to compensate families for the distress caused by such lapses. That may prove to be the most concrete benefit of disclosure at a societal level: if the hospital is forced to compensate the families in this case, Dr. Scarpetta will take considerably greater care in the future when allocating work while away. In the long run, such settlements may serve as powerful deterrents, reducing the likelihood of additional morgue mishaps.
79
“He’d Rather Die Than Live Like This”
Clarence is a fifty-year-old outdoorsman who loves fishing, hunting, and horseback riding, but his deepest passion is for wood carving. He works as a carpenter. One summer, while camping in the wilderness, he contracts a bacterial infection and must be airlifted to a community hospital. By the time he arrives, his blood pressure has dropped so low that he has lost consciousness; blood perfusion to his hands and feet has been minimal for hours. The doctors have grim news for his sisters, Edna and Ethel, who are his only immediate relatives. Even with aggressive antibiotic treatment, which may yet save his life, his hands and feet will have to be amputated.
Edna says, “I guess that’s our only choice. Clarence is a fighter. He would have wanted to live at all costs.” Ethel disagrees. “Our brother would never want to live so disabled,” she says. “The outdoors and physical labor are his life. You have to stop these aggressive antibiotics, doctor. Let nature take its course. I wouldn’t want him to suffer the torture of waking up in this state.” According to the doctors, if the antibiotics work and Clarence ultimately regains consciousness but is unwilling to live in his new condition, there will be nothing they can legally do to help him end his life.
Should the doctors continue with the aggressive antibiotic treatment or stop it and let Clarence die?
Reflection: Withdrawing Life Support
Questions surrounding when to halt aggressive care and to remove life support did not surface frequently in medicine until the 1970s, when new technologies—from ventilators and dialysis machines to more powerful antihypotensive agents and antibiotics—made it possible to prolong the lives of the critically ill as never before. Right-to-die cases that entered the public discourse, such as those of Karen Ann Quinlan (1954–1985) and Nancy Cruzan (1957–1990), resulted as much from improved medical care as from any change in ethical norms.
Clarence’s case raises two distinct issues that often arise in contemporary medical ethics: how to weigh “sanctity of life” against “quality of life” and what to do when an incapacitated patient’s wishes are unclear and family members cannot agree.
Advocates for upholding the sanctity of life believe that human life has intrinsic value and should be preserved at all costs. Historically, many religious conservatives have adopted this position. In contrast, critics of this standard argue that, under some circumstances, the quality of a person’s life drops so low that aggressive care or life support no longer makes sense. At their extremes, both positions prove highly controversial. Utilitarian philosopher Peter Singer, a strong champion of the quality-of-life position, has used it to justify euthanasia for disabled infants. The entire nation saw the extremes that sanctity-of-life advocates adopted to keep Terri Schiavo alive in 2005 over the objections of her husband and her own reported wishes.
One should note that under ordinary circumstances, these two values are not in conflict: doctors are usually laboring both to prolong a patient’s life and to improve its quality. Ethicist Dan Callahan has noted that there is an imbalance between these two standards: “sanctity of life” leads to minimal ambiguity, while the minimum quality of life one might be willing to tolerate varies greatly from person to person. Advance directives, such as living wills and healthcare proxies, which spell out one’s wishes long in advance of illness, are designed to address this subjectivity. Yet such documents raise the question of whether a healthy person can predict with accuracy what she would want if she became critically ill, without having already experienced such an illness. Patients are frequently known to “bargain down”: to adjust their standards to accept a lower quality of life than they would have when healthy, once they actually find themselves in a more impaired condition.
The purpose of appointing a healthcare proxy is to empower an agent to act on one’s behalf if a person can no longer make medical decisions. Healthy people are advised to discuss their end-of-life wishes with their proxies. In the absence of a proxy, nearly every state enables a so-called “surrogate,” often a closely related family member, to make decisions for the patient. State laws provide for hierarchies of surrogates: usually, spouses take precedence over adult children, followed by parents, siblings, collateral relatives, and sometimes even close friends. When two or more surrogates of equal rank cannot agree—as with Clarence’s sisters—states vary widely in how to resolve the disagreement. Some, like New York and Maryland, refer the case to a committee of experts to address the matter, which may ultimately end up decided in court, while West Virginia lets the doctors choose which surrogate has the stronger claim based on such factors as perceived knowledge of the patient and degree of concern. In cases with an odd number of potential decision makers, some states allow for a majority vote.
The challenge of cases like Clarence’s is that nobody can predict whether he will thrive or suffer in his new condition. A closely related set of cases involve patients who wake up on ventilators after enduring C2 level spinal cord injuries that render them lifelong quadriplegics who will remain permanently dependent on machines to breathe. When these patients awake from medically induced comas or sedation, they often demand (via computerized eye trackers) that their ventilators be shut off, insisting they would rather die than live in their impaired conditions. In these cases, the patient is expressing a clear wish—but one that may be compromised by shock or depression. One of the most contentious disagreements in many hospitals surrounds how long such patients should be compelled to remain on life support over their objections, often suffering existentially during this time, while psychiatrists and therapists attempt to help them adjust to their new lives.
Some patients in Clarence’s condition go on to thrive. British newspapers have reported on the case of John Middleton, who lost four limbs at age forty-four due to flesh-eating bacteria—but managed to regain a fulfilling life with the help of prosthetics and a supportive partner. At the same time, the media rarely reports on quadruple amputees who lead lives of silent desperation in institutions, wishing their providers or relatives had withdrawn care when they had an opportunity to do so.
Sources and Further Reading
Reflection #1
Anderson, Kermyt G. “How Well Does Paternity Confidence Match Actual Paternity? Evidence from Worldwide Nonpaternity Rates.” Current Anthropology 47, no. 3 (June 2006).
Lerner, Barron H. “Cases; When a Doctor Stumbles on a Family Secret.” New York Times, September 16, 2003.
Reflection #2
Faden, Ruth R., Tom L. Beauchamp, and Nancy M. P. King. A History and Theory of Inform
ed Consent. New York: Oxford University Press, 1986.
Mariner, Wendy K., and George J. Annas. “Informed Consent and the First Amendment,” New England Journal of Medicine 372, no. 14 (April 2, 2015): 1285–87.
Rothman, D. J. “The Shame of Medical Research,” New York Review of Books, March 8, 2001.
Reflection #3
Appelbaum, Paul S., and Alan Meisel. “Therapists’ Obligations to Report Their Patients’ Criminal Acts,” Bulletin of the American Academy of Psychiatry and the Law 14, no.3 (February 1986): 221–30.
Goldman, Marcus J., and Thomas G. Gutheil. “The Misperceived Duty to Report Patients’ Past Crimes.” Bulletin of the American Academy of Psychiatry and the Law 22, no. 3 (September 1994): 407–10.
Jaffee v. Redmond, 518 U.S. 1 (1996).
Tarasoff v. Regents of the University of California, 17 Cal. 3d 425 (1976).
Reflection #4
Accordino, Robert, Nicholas Kopple-Perry, Nada Gligorov, and Stephen Krieger. “The Medical Record as Legal Document: When Can the Patient Dictate the Content?” Clinical Ethics 9, no. 1 (January 7, 2014): 53–56.
Golodetz, A., J. Ruess, and R. L. Milhous. “The Right to Know: Giving the Patient His Medical Record.” Archives of Physical Medicine and Rehabilitation 57, no. 2 (February 1976): 78–81.
Steiner, P. “Patient Access to the Medical Record: A Study of Physician Attitudes.” Medical Record News 49, no. 4 (August 1978): 77–78, 80–81.
Reflection #5
Altman, Lawrence K., and Todd S. Purdum. “In J.F.K. File, Hidden Illness, Pain and Pills.” New York Times, November 17, 2002.
Appel, Jacob M. “History’s DNA.” Chicago Tribune, August 21, 2008.
Brown, David. “Is Lincoln Earliest Recorded Case of Rare Disease?” Washington Post, November 26, 2007.
Davidson, Jonathan, Kathryn Connor, and Marvin S. Swartz. “Mental Illness in U.S. Presidents Between 1776 and 1974: A Review of Biographical Sources.” Journal of Nervous and Mental Disease 194, no. 1 (January 2006): 47–51.
Ferrell, R. H. Ill-Advised: Presidential Health and Public Trust, 53–150. Columbia, MO: University of Missouri Press, 1996.
Gugliotta, Guy. “DNA May Reveal Who Can Claim Columbus.” Washington Post, May 15, 2006.
Hazelgrove, William. Madam President: The Secret Presidency of Edith Wilson. Washington, DC: Regnery, 2016.
Sotos, John G. The Physical Lincoln Complete. Mt. Vernon, VA: Mt. Vernon Book Systems, 2008.
Watson, Robert P., and Dale Berger. “Reconsidering Ike’s Health and Legacy: A Surprising Lesson in Duty at the Little White House Residential Retreat.” Eisenhower Institute.
Reflection #6
Payton v. Weaver, Cal. Ct. App., 182 Cal. Rptr. 225 (1982).
Sack, Kevin. “Hospital Falters as Refuge for Illegal Immigrants.” New York Times, November 20, 2009.
Reflection #7
English, Peter C., and Herman Grossman. “Radiology and the History of Child Abuse.” Pediatric Annals 12, no. 12 (December 1983): 870–74.
Kempe, C. Henry, Frederic N. Silverman, Brandt F. Steele, William Droegemueller, and Henry K. Silver. “The Battered-Child Syndrome.” JAMA 181, no. 1 (1962): 17–24.
Knight, Bernard. “The History of Child Abuse.” Forensic Science International 30, no. 2–3 (February–March 1986): 135–41.
Kotz, Deborah. “When Does Physical Discipline Become Child Abuse?” Boston Globe, September 17, 2014.
Reflection #8
Appel Jacob M. “May Physicians Date Their Patients’ Relatives? Rethinking Sexual Misconduct & Disclosure after Long v. Ostroff.” Medicine and Health Rhode Island 87, no. 5 (May 2004):159–61.
Chesler, Phyllis. “The Sensuous Psychiatrists.” New York, June 19, 1972.
Freeman, Lucy, and Julie Roy. Betrayal: The True Story of the First Woman to Successfully Sue Her Psychiatrist for Using Sex in the Guise of Therapy. New York: Stein and Day, 1976.
Gartrell, N., J. Herman, S. Olarte, M. Feldstein, and R. Localio. “Psychiatrist-Patient Sexual Contact: Results of a National Survey. I: Prevalence.” American Journal of Psychiatry 143, no. 9 (September 1986): 1126–31.
Reflection #9
Altman, Lawrence K. “When a Murderer Wants to Practice Medicine.” New York Times, January 29, 2008.
Appel, Jacob M. “Sweden Asks: Should Convicted Murderers Practice Medicine?” Cambridge Quarterly of Healthcare Ethics 19, no. 4 (October 2010): 559–62.
Kmietovicz, Zosia. “R.E.S.P.E.C.T.—Why Doctors Are Still Getting Enough of It.” BMJ 324, no. 7328 (January 5, 2002): 11.
Rakatansky, Herbert. “Criminal Convictions and Medical Licensure.” AMA Journal of Ethics 13, no. 10 (October 2011): 712–17.
Reflection #10
Beck, Julie. “ ‘Do No Harm’: When Doctors Torture.” Atlantic, December 2014.
Jesper, S. “Doctors’ Involvement in Torture.” Torture 18, no. 3 (2008):161–75.
Singh, Jerome Amir. “American Physicians and Dual Loyalty Obligations in the ‘War on Terror.’ ” BMC Medical Ethics 4, no. 1 (August 1, 2003): E4.
Reflection #11
Creswell, Julie, and Jessica Silver-Greenberg. “Dimon’s Cancer and the Fine Line in Revealing Illness of a C.E.O.” New York Times, July 2, 2014.
Horwich, Allan. “When the Corporate Luminary Becomes Seriously Ill: When Is a Corporation Obligated to Disclose That Illness and Should the Securities and Exchange Commission Adopt a Rule Requiring Disclosure?” New York University Journal of Law and Business 5, no. 2 (2009).
Parloff, Roger. “Why the SEC Is Probing Steve Jobs: Behind the Investigation into the Timing of Disclosure of the Apple’s Chief’s Health Problems.” Fortune, January 22, 2009.
Reflection #12
Ojanuga, D. “The Medical Ethics of the ‘Father of Gynaecology,’ Dr. J. Marion Sims.” Journal of Medical Ethics 19, no. 1 (March 1993): 28–31.
Perry, Susan. “Nazi Link Isn’t the Only Reason to Abandon Eponymous Medical Names.” Minnesota Post, May 19, 2011.
Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Anchor, 2008.
Reflection #13
Costandi, Mo. “The Science and Ethics of Voluntary Amputation.” Guardian, May 30, 2012.
Elliott, Carl. “A New Way to Be Mad.” Atlantic, December 2000.
Kloster, Ulla. “I Live like a Disabled Person Even Though I’m Physically Healthy …” Mail on Sunday, July 16, 2013.
Reflection #14
Allen, David B., Michael Kappy, Douglas Diekema, and Norman Fost. “Growth-Attenuation Therapy: Principles for Practice.” Pediatrics 123, no. 6 (June 2009): 1556–61.
Burkholder, Amy. “Disabled Girl’s Parents Defend Growth-Stunting Treatment.” CNN.com, March 12, 2008.
Davies, Caroline. “Ashley the Pillow Angel: Love or Madness?” Telegraph, January 5, 2007.
Gibbs, Nancy. “Pillow Angel Ethics.” Time, January 7, 2007.
McDonald, Anne. “The Other Story from a ‘Pillow Angel.’ ” SeattlePI.com, June 16, 2007.
Ostrom, Carol. “Child’s Hysterectomy Illegal, Hospital Agrees.” Seattle Times, May 9, 2007.
Pilkington, Ed. “The Ashley Treatment: ‘Her Life Is As Good As We Can Possibly Make It.’ ” Guardian, March 15, 2012.
Reflection #15
Corbett, Sara. “A Cutting Tradition.” New York Times Magazine, January 20, 2008
Westcott, Lucy. “Female Genital Mutilation on the Rise in the U.S.” Newsweek, February 6, 2015.
Reflection #16
Kowalczyk, Liz. “Donor’s Death Shatters Family, Stuns Surgeons.” Boston Globe, February 2, 2014.
Miller, C. M., M.L. Smith, and Uso T. Diago. “Living Donor Liver Transplantation: Ethical Considerations.” Mount Sinai Journal of Medicine 79, no. 2 (March–April 2012): 214–22.
Reflection #17
“Anemia Victim McFall Dies of Hemorrhage.” Michigan Daily, August 11, 1978.
McFa
ll v. Shimp, 10 Pa. D. & C. 3d 90 (1978).
Wilkerson, Isabel. “In Marrow Donor Lawsuit, Altruism Collides With Right to Protect Child.” New York Times, July 30, 1990.
Reflection #18
Flannery, Mary. “Stage of Illness Decides Priority But Some Docs Say There’s Favoritism.” Daily News, June 9, 1995.
Grady, Denise, and Barry Meier. “A Transplant That Is Raising Many Questions.” New York Times, June 23, 2009.
Munson, Ronald. Raising the Dead: Organ Transplants, Ethics, and Society. New York: Oxford University Press, 2002.
Reflection #19
Appel, Jacob M., and Mark D. Fox. “Organ Solicitation on the Internet: Every Man for Himself?” Hastings Center Report 35, no. 3 (May–June 2005): 14.
Caplan, Arthur, Sheldon Zink, and Stacey Wertlieb. “Jumping to the Front of the Line for an Organ Transplant Is Unfair.” Chicago Tribune, September 1, 2004.
Grantham, Dulcinea A. “Transforming Transplantation: The Effect of the Health and Human Services Final Rule on the Organ Allocation System.” University of San Francisco Law Review 35 (Summer 2001): 751–52 .
Goldberg, Aviva. “Advertising for Organs.” AMA Journal of Ethics 7, no. 9 (September 2005): 619–24.
Roen, Terry O. “ ‘Kindred Spirit’ Donates a Kidney.” Orlando Sentinel, August 13, 2005.
Reflection #20
Appel, Jacob M. “Wanted Dead or Alive? Kidney Transplantation in Inmates Awaiting Execution.” Journal of Clinical Ethics 16, no. 1 (Spring 2005): 58–60.
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