HEC Forum

, Volume 25, Issue 3, pp 191–209 | Cite as

Institutional Futility Policies are Inherently Unfair

  • Philip M. RosoffEmail author


For many years a debate has raged over what constitutes futile medical care, if patients have a right to demand what doctors label as futile, and whether physicians should be obliged to provide treatments that they think are inappropriate. More recently, the argument has shifted away from the difficult project of definitions, to outlining institutional policies and procedures that take a measured and patient-by-patient approach to deciding if an existing or desired intervention is futile. The prototype is the Texas Advance Directives Act, but similar procedures have been widely implemented both with and without the protection of the law. While this method has much to recommend it, there are inherent moral flaws that have not received as much discussion as warranted. Because these strategies adopt a semblance of procedural justice, it is assumed that the outcomes of such proceedings will be both correct and fair. In this paper, I argue that there are three main irremediable defects in the policy approach: there is the potential for arbitrary decision-making about futility in specific cases; there are structural, pre-ordained consequences for ethnic minorities who would be disproportionately affected by the use of these procedures; and the use of rationing justifications to support the use of these policies. These flaws detract so much from any benefit that could be derived that they make such strategies more harmful than helpful.


Futility Procedural justice Medical decision-making 


  1. Allen, L. A., Yager, J. E., Funk, M. J., Levy, W. C., Tulsky, J. A., Bowers, M. T., et al. (2008). Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure. Journal of the American Medical Association, 299(21), 2533–2542. doi: 10.1001/jama.299.21.2533.CrossRefGoogle Scholar
  2. Alpers, A., & Lo, B. (1999). Avoiding family feuds: Responding to surrogate demands for life-sustaining interventions. The Journal of Law, Medicine & Ethics, 27(1), 74–80.CrossRefGoogle Scholar
  3. Anonymous. (1968). A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. Journal of the American Medical Association, 205(6), 337–340.Google Scholar
  4. Baily, M. A. (2011). Futility, autonomy, and cost in end-of-life care. The Journal of Law, Medicine & Ethics, 39(2), 172–182. doi: 10.1111/j.1748-720X.2011.00586.x.CrossRefGoogle Scholar
  5. Bernat, J. L. (2005). Medical futility: Definition, determination, and disputes in critical care. Neurocritical Care, 2(2), 198–205.CrossRefGoogle Scholar
  6. Bernat, J. L. (2009). Brain death. In S. Laureys & G. Tononi (Eds.), The neurology of consciousness. Cognitive neuroscience and neuropathology (pp. 151–161). London: Academic Press.CrossRefGoogle Scholar
  7. Bissel, A. (2010). Order at the end of life: Establishing a clear and fair mechanism for the resolution of futility disputes. Vanderbilt Law Review, 63, 491–540.Google Scholar
  8. Blackhall, L. J., Frank, G., Murphy, S. T., Michel, V., Palmer, J. M., & Azen, S. P. (1999). Ethnicity and attitudes towards life sustaining technology. Social Science and Medicine, 48(12), 1779–1789.CrossRefGoogle Scholar
  9. Boulware, L. E., Cooper, L. A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2003). Race and trust in the health care system (research articles). Public Health Reports, 118(4), 358–365.Google Scholar
  10. Brett, A. S. (2005). Futility revisited: Reflections on the perspectives of families, physicians, and institutions. HEC Forum, 17(4), 276–293. doi: 10.1007/s10730-005-5154-y.CrossRefGoogle Scholar
  11. Burns, J. P., & Truog, R. D. (2007). Futility. Chest, 132(6), 1987–1993. doi: 10.1378/chest.07-1441.CrossRefGoogle Scholar
  12. Callahan, D. (1998). False hopes. Why America’s quest for perfect health is a recipe for failure. New York: Simon and Shuster.Google Scholar
  13. Callahan, D. (2009). Taming the beloved beast, chap. 6. Princeton: Princeton University Press.Google Scholar
  14. Cohen, J., van Delden, J., Mortier, F., Lofmark, R., Norup, M., Cartwright, C., et al. (2008). Influence of physicians’ life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries. Journal of Medical Ethics, 34(4), 247–253.CrossRefGoogle Scholar
  15. Cruz-Flores, S., Rabinstein, A., Biller, J., Elkind, M. S., Griffith, P., Gorelick, P. B., et al. (2011). Racial-ethnic disparities in stroke care: The American experience: A statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 42(7), 2091–2116. doi: 10.1161/STR.0b013e3182213e24.CrossRefGoogle Scholar
  16. Curlin, F. A., Lawrence, R. E., Chin, M. H., & Lantos, J. D. (2007a). Religion, conscience, and controversial clinical practices. New England Journal of Medicine, 356(6), 593–600.CrossRefGoogle Scholar
  17. Curlin, F. A., Sellergren, S. A., Lantos, J. D., & Chin, M. H. (2007b). Physicians’ observations and interpretations of the influence of religion and spirituality on health. Archives of Internal Medicine, 167(7), 649–654.CrossRefGoogle Scholar
  18. Daniels, N., & Sabin, J. (2008). Setting limits fairly. Learning to share resources for health (2nd ed.). Oxford: Oxford University Press.Google Scholar
  19. Degenholtz, H. B., Thomas, S. B., & Miller, M. J. (2003). Race and the intensive care unit: Disparities and preferences for end-of-life care. Critical Care Medicine, 31(5 Suppl), S373–S378.CrossRefGoogle Scholar
  20. Diekema, D. S. (1996). The preferential treatment of VIPs in the emergency department. The American Journal of Emergency Medicine, 14(2), 226–229. doi: 10.1016/S0735-6757(96)90137-0.CrossRefGoogle Scholar
  21. Fine, R. L. (2000). Medical futility and the Texas Advance Directives Act of 1999. Proceedings, 13(2), 144–147.Google Scholar
  22. Fine, R. L. (2001). The Texas Advance Directives Act of 1999: Politics and reality. HEC Forum, 13(1), 59–81.CrossRefGoogle Scholar
  23. Fine, R. L. (2009). Point: The Texas Advance Directives Act effectively and ethically resolves disputes about medical futility. Chest, 136(4), 963–967. doi: 10.1378/chest.09-1267.CrossRefGoogle Scholar
  24. Fine, R. L., & Mayo, T. W. (2003). Resolution of futility by due process: Early experience with the Texas Advance Directives Act. Annals of Internal Medicine, 138(9), 743–746.CrossRefGoogle Scholar
  25. Fox, R. C. (1957). Training for uncertainty. In R. K. Meron, G. G. Reader, & P. L. Kendall (Eds.), The student-physician (pp. 207–244). Cambridge, MA: Harvard University Press.Google Scholar
  26. Gabbay, E., Calvo-Broce, J., Meyer, K., Trikalinos, T., Cohen, J., & Kent, D. (2010). The empirical basis for determinations of medical futility. Journal of General Internal Medicine, 25(10), 1083–1089. doi: 10.1007/s11606-010-1445-3.CrossRefGoogle Scholar
  27. Galambos, C. M. (1998). Preserving end-of-life autonomy: The Patient Self-Determination Act and the Uniform Health Care Decisions Act. Health and Social Work, 23(4), 275–281.Google Scholar
  28. Gampel, E. (2006). Does professional autonomy protect medical futility judgments? Bioethics, 20(2), 92–104.CrossRefGoogle Scholar
  29. Gregory, P. C., LaVeist, T. A., & Simpson, C. (2006). Racial disparities in access to cardiac rehabilitation (multicenter study). American Journal of Physical Medicine & Rehabilitation/Association of Academic Physiatrists, 85(9), 705–710. doi: 10.1097/01.phm.0000233181.34999.3d.Google Scholar
  30. Gust, D. A., Darling, N., Kennedy, A., & Schwartz, B. (2008). Parents with doubts about vaccines: Which vaccines and reasons why. Pediatrics, 122(4), 718–725. doi: 10.1542/peds.2007-0538.CrossRefGoogle Scholar
  31. Guzman, J. A., Sasidhar, M., & Stoller, J. K. (2011). Caring for VIPs: Nine principles. Cleveland Clinic Journal of Medicine, 78(2), 90–94. doi: 10.3949/ccjm.78a.10113.CrossRefGoogle Scholar
  32. Hakim, R. B., Teno, J. M., Harrell, F. E, Jr, Knaus, W. A., Wenger, N., Phillips, R. S., et al. (1996). Factors associated with do-not-resuscitate orders: Patients’ preferences, prognoses, and physicians’ judgments. SUPPORT investigators. Study to understand prognoses and preferences for outcomes and risks of treatment. Annals of Internal Medicine, 125(4), 284–293.CrossRefGoogle Scholar
  33. Halevy, A. (2008). Medical futility, patient autonomy, and professional integrity: Finding the appropriate balance (historical article). Health Matrix, 18(2), 261–290.Google Scholar
  34. Halevy, A., & Brody, B. A. (1996). A multi-institution collaborative policy on medical futility. Journal of the American Medical Association, 276(7), 571–574. doi: 10.1001/jama.1996.03540070067035.CrossRefGoogle Scholar
  35. Hanchate, A., Kronman, A. C., Young-Xu, Y., Ash, A. S., & Emanuel, E. (2009). Racial and ethnic differences in end-of-life costs: Why do minorities cost more than whites? Archives of Internal Medicine, 169(5), 493–501. doi: 10.1001/archinternmed.2008.616.CrossRefGoogle Scholar
  36. Heilig, S., Andereck, W., Brody, R., Burns, P., Luce, J. M., Kennedy, W. K., et al. (1999). Nonbeneficial or futile medical treatment: Conflict resolution guidelines for the San Francisco Bay area. Bay Area Network of Ethics Committees (BANEC) Nonbeneficial Treatment Working Group. Western Journal of Medicine, 170(5), 287–290.Google Scholar
  37. Heitman, E., & Gremillion, V. (2001). Ethics committees under Texas law: Effects of the Texas Advance Directives Act (evaluation studies). HEC Forum: An Interdisciplinary Journal on Hospitals’ Ethical and Legal Issues, 13(1), 82–104.Google Scholar
  38. Helft, P. R., Siegler, M., & Lantos, J. (2000). The rise and fall of the futility movement. New England Journal of Medicine, 343(4), 293–296. doi: 10.1056/NEJM200007273430411.CrossRefGoogle Scholar
  39. Hurst, S. A., Reiter-Theil, S., Slowther, A. M., Pegoraro, R., Forde, R., & Danis, M. (2008). Should ethics consultants help clinicians face scarcity in their practice? Journal of Medical Ethics, 34(4), 241–246. doi: 10.1136/jme.2006.019828.CrossRefGoogle Scholar
  40. Jacobs, H. C. (2009). The Texas Advance Directives Act—is it a good model? Seminars in Perinatology, 33(6), 384–390. doi: 10.1053/j.semperi.2009.07.006.CrossRefGoogle Scholar
  41. Jecker, N. S., & Schneiderman, L. J. (1992). Futility and rationing. American Journal of Medicine, 92(2), 189–196. doi: 10.1016/0002-9343(92)90111-n.CrossRefGoogle Scholar
  42. Johnson, K. S., Kuchibhatla, M., & Tulsky, J. A. (2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? (research support, N.I.H., Extramural). Journal of the American Geriatrics Society, 56(10), 1953–1958. doi: 10.1111/j.1532-5415.2008.01919.x.CrossRefGoogle Scholar
  43. Johnson, R. W., Newby, L. K., Granger, C. B., Cook, W. A., Peterson, E. D., Echols, M., et al. (2010). Differences in level of care at the end of life according to race. American Journal of Critical Care, 19(4), 335–343. doi: 10.4037/ajcc2010161.CrossRefGoogle Scholar
  44. Kagawa-Singer, M., & Blackhall, L. J. (2001). Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA, 286(23), 2993–3001.CrossRefGoogle Scholar
  45. Katz, M. (2011). When is medical care “futile”? The institutional competence of the medical profession regarding the provision of life = sustaining care. Nebraska Law Review, 90, 1–69.Google Scholar
  46. Lantos, J. (2006). When parents request seemingly futile treatment for their children. Mount Sinai Journal of Medicine, 73(3), 587–589.Google Scholar
  47. Lantos, J. D., Singer, P. A., Walker, R. M., Gramelspacher, G. P., Shapiro, G. R., Sanchez-Gonzalez, M. A., et al. (1989). The illusion of futility in clinical practice. American Journal of Medicine, 87(1), 81–84.CrossRefGoogle Scholar
  48. Larochelle, M. R., Rodriguez, K. L., Arnold, R. M., & Barnato, A. E. (2009). Hospital staff attributions of the causes of physician variation in end-of-life treatment intensity (multicenter study research support, N.I.H., Extramural). Palliative Medicine, 23(5), 460–470. doi: 10.1177/0269216309103664.CrossRefGoogle Scholar
  49. Melichar, L. (2009). The effect of reimbursement on medical decision making: Do physicians alter treatment in response to a managed care incentive? Journal of Health Economics, 28(4), 902–907. doi: 10.1016/j.jhealeco.2009.03.004.CrossRefGoogle Scholar
  50. Montgomery, K. (2006). How doctors think. New York: Oxford University Press.Google Scholar
  51. Moratti, S. (2009). The development of “medical futility”: Towards a procedural approach based on the role of the medical profession. Journal of Medical Ethics, 35(6), 369–372. doi: 10.1136/jme.2008.027755.CrossRefGoogle Scholar
  52. Morrison, R. S., & Meier, D. E. (2004). High rates of advance care planning in New York City’s elderly population (clinical trial randomized controlled trial research support, non-U.S. Gov’t research support, U.S. Gov’t, P.H.S.). Archives of Internal Medicine, 164(22), 2421–2426. doi: 10.1001/archinte.164.22.2421.CrossRefGoogle Scholar
  53. Moseley, K. L., Church, A., Hempel, B., Yuan, H., Goold, S. D., & Freed, G. L. (2004). End-of-life choices for African-American and white infants in a neonatal intensive-care unit: A pilot study. Journal of the National Medical Association, 96(7), 933–937.Google Scholar
  54. Moylan, C. A., Brady, C. W., Johnson, J. L., Smith, A. D., Tuttle-Newhall, J. E., & Muir, A. J. (2008). Disparities in liver transplantation before and after introduction of the MELD score. JAMA, 300(20), 2371–2378.CrossRefGoogle Scholar
  55. Muni, S., Engelberg, R. A., Treece, P. D., Dotolo, D., & Curtis, J. R. (2011). The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU. Chest, 139(5), 1025–1033. doi: 10.1378/chest.10-3011.CrossRefGoogle Scholar
  56. O’Callaghan, N. (2008). When Atlas shrugged: May the state wash its hands of those in need of life-sustaining medical treatment? Health Matrix, 18, 291–372.Google Scholar
  57. Okhuysen-Cawley, R., McPherson, M. L., & Jefferson, L. S. (2007). Institutional policies on determination of medically inappropriate interventions: Use in five pediatric patients. Pediatric Critical Care Medicine, 8(3), 225–230. doi: 10.1097/01.PCC.0000264317.83788.ED.CrossRefGoogle Scholar
  58. Pellegrino, E. D. (2005). Futility in medical decisions: The word and the concept. HEC Forum, 17(4), 308–318. doi: 10.1007/s10730-005-5156-9.CrossRefGoogle Scholar
  59. Poses, R. M., Bekes, C., Copare, F. J., & Scott, W. E. (1989). The answer to “What are my chances, Doctor?” depends on whom is asked: Prognostic disagreement and inaccuracy for critically ill patients. Critical Care Medicine, 17(8), 827–833.CrossRefGoogle Scholar
  60. Poses, R. M., McClish, D. K., Bekes, C., Scott, W. E., & Morley, J. N. (1991). Ego bias, reverse ego bias, and physicians’ prognostic. Critical Care Medicine, 19(12), 1533–1539.CrossRefGoogle Scholar
  61. Prendergast, T. J. (1995). Futility and the common cold. Chest, 107(3), 836–844. doi: 10.1378/chest.107.3.836.CrossRefGoogle Scholar
  62. President’s Council on Bioethics. (2008). Controversies in the determination of death. Washington, D.C.: Department of Health and Human Services.Google Scholar
  63. Rajakumar, K., Thomas, S. B., Musa, D., Almario, D., & Garza, M. A. (2009). Racial differences in parents’ distrust of medicine and research (comparative study research support, N.I.H., Extramural). Archives of Pediatrics and Adolescent Medicine, 163(2), 108–114. doi: 10.1001/archpediatrics.2008.521.CrossRefGoogle Scholar
  64. Rawls, J. (1999). A theory of justice (revised ed.). Cambridge, MA: Harvard University Press.Google Scholar
  65. Rosoff, P. M., & Coleman, D. L. (2011). The case for legal regulation of physicians’ off-label prescribing. Notre Dame Law Review, 86(2), 649–691.Google Scholar
  66. Schneiderman, L. J., Jecker, N. S., & Jonsen, A. R. (1990). Medical futility: Its meaning and ethical implications. Annals of Internal Medicine, 112(12), 949–954. doi: 10.1059/0003-4819-112-12-949.CrossRefGoogle Scholar
  67. Schneiderman, L. J., Jecker, N. S., & Jonsen, A. R. (1996). Medical futility: Response to critiques. Annals of Internal Medicine, 125(8), 669–674. doi: 10.1059/0003-4819-125-8-199610150-00007.CrossRefGoogle Scholar
  68. Shafrin, J. (2010). Operating on commission: Analyzing how physician financial incentives affect surgery rates (comparative study). Health Economics, 19(5), 562–580. doi: 10.1002/hec.1495.Google Scholar
  69. Silveira, M. J., Kim, S. Y. H., & Langa, K. M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362(13), 1211–1218. doi: 10.1056/NEJMsa0907901.CrossRefGoogle Scholar
  70. Smally, A. J., Carroll, B., Carius, M., Tilden, F., & Werdmann, M. (2011). Treatment of VIPs. Annals of Emergency Medicine, 58(4), 397–398. doi: 10.1016/j.annemergmed.2011.05.009.CrossRefGoogle Scholar
  71. Smith, M. L. (2008). Medical inappropriateness review: Appropriately performed by a medical committee. Health Matrix: Journal of Law-Medicine, 18(2), 237–244.Google Scholar
  72. Smith, M. L., Gremillion, G., Slomka, J., & Warneke, C. L. (2007). Texas hospitals’ experience with the Texas Advance Directives Act. Critical Care Medicine, 35(5), 1271–1276.CrossRefGoogle Scholar
  73. Stewart, C. (2011). Futility determination as a process: Problems with medical sovereignty, legal issues and the strengths and weakness of the procedural approach. Journal of Bioethical Inquiry, 8(2), 155–163. doi: 10.1007/s11673-011-9297-z.CrossRefGoogle Scholar
  74. Truog, R. D. (2000). Futility in pediatrics: From case to policy. Journal of Clinical Ethics, 11(2), 136–141.Google Scholar
  75. Truog, R. D. (2007). Brain death—too flawed to endure, too ingrained to abandon. Journal of Law, Medicine & Ethics, 35(2), 273–281.CrossRefGoogle Scholar
  76. Truog, R. D. (2008). End-of-life decision-making in the United States. European Journal of Anaesthesiology, 25(Supplement S42), 43–50. doi: 10.1017/S0265021507003419.CrossRefGoogle Scholar
  77. Truog, R. D. (2009a). Counterpoint: The Texas Advance Directives Act is ethically flawed. Chest, 136(4), 968–971. doi: 10.1378/chest.09-1269.CrossRefGoogle Scholar
  78. Truog, R. D. (2009). Counterpoint: The Texas Advance Directives Act is ethically flawed: Medical futility disputes must be resolved by a fair process (comment comparative study). Chest, 136(4), 968–971; discussion 971–963. doi: 10.1378/chest.09-1269.
  79. Truog, R. D., & Mitchell, C. (2006). Futility—from hospital policies to state laws. American Journal of Bioethics, 6(5), 19–21; discussion W30-12. doi: 10.1080/15265160600858989.Google Scholar
  80. Tversky, A., & Kahneman, D. (1974). Judgment under uncertainty: Heuristics and biases. Science, 185(4157), 1124–1131.CrossRefGoogle Scholar
  81. Ubel, P. A. (2001). Pricing life. Why it’s time for health care rationing. Cambridge, MA: MIT Press.Google Scholar
  82. Ubel, P. A., & Goold, S. (1997). Recognizing bedside rationing: Clear cases and tough calls. Annals of Internal Medicine, 126(1), 74–80.CrossRefGoogle Scholar
  83. Vig, E., Starks, H., Taylor, J., Hopley, E., & Fryer-Edwards, K. (2007). Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine, 22(9), 1274–1279. doi: 10.1007/s11606-007-0252-y.CrossRefGoogle Scholar
  84. Volandes, A. E., Paasche-Orlow, M., Gillick, M. R., Cook, E. F., Shaykevich, S., Abbo, E. D., et al. (2008). Health literacy not race predicts end-of-life care preferences. Journal of Palliative Medicine, 11(5), 754–762.CrossRefGoogle Scholar
  85. Waters, C. M. (2001). Understanding and supporting African Americans’ perspectives of end-of-life care planning and decision making. Qualitative Health Research, 11(3), 385–398.CrossRefGoogle Scholar
  86. White, D. B., Engelberg, R. A., Wenrich, M. D., Lo, B., & Curtis, J. R. (2010). The language of prognostication in intensive care units. Medical Decision Making, 30(1), 76–83. doi: 10.1177/0272989x08317012.CrossRefGoogle Scholar
  87. Wijdicks, E. F. (2001). The diagnosis of brain death. New England Journal of Medicine, 344(16), 1215–1221.CrossRefGoogle Scholar
  88. Wilkinson, D. (2009). The self-fulfilling prophecy in intensive care. Theoretical Medicine and Bioethics, 30(6), 401–410. doi: 10.1007/s11017-009-9120-6.CrossRefGoogle Scholar
  89. Wojtasiewicz, M. E. (2006). Damage compounded: Disparities, distrust, and disparate impact in end-of-life conflict resolution policies. American Journal of Bioethics, 6(5), 8–12. doi: 10.1080/15265160600856801.CrossRefGoogle Scholar
  90. Zier, L. S., Burack, J. H., Micco, G., Chipman, A. K., Frank, J. A., Luce, J. M., et al. (2008). Doubt and belief in physicians’ ability to prognosticate during critical illness: The perspective of surrogate decision makers. Critical Care Medicine, 36(8), 2341–2347. doi: 10.1097/CCM.0b013e318180ddf9.CrossRefGoogle Scholar
  91. Zimrin, A. B., & Hess, J. R. (2007). Planning for pandemic influenza: Effect of a pandemic on the supply and demand for blood products in the United States. Transfusion, 47(6), 1071–1079.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  1. 1.Departments of Pediatrics and Medicine, Trent Center for Bioethics, Humanities and History of MedicineDuke University Medical CenterDurhamUSA

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