Semin Respir Crit Care Med 2012; 33(04): 393-400
DOI: 10.1055/s-0032-1322403
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Shaping End-of-Life Care: Behavioral Economics and Advance Directives

Scott D. Halpern
1   Division of Pulmonary, Allergy, and Critical Care Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania
2   Department of Biostatistics and Epidemiology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania
3   Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania
› Author Affiliations
Further Information

Publication History

Publication Date:
08 August 2012 (online)

Abstract

A central but unmet challenge in health care delivery is to increase the probability that the care patients receive near the end of their life is consistent with their goals, values, and preferences. Providing patient-centered care at the end of life is challenging. In their final days, nearly a third of older Americans need critical decisions made regarding the use or nonuse of life-sustaining interventions, but the patients themselves cannot participate in those decisions. Although this observation highlights the promise of advance directives (ADs), to date ADs have not delivered on this promise. This article provides a new framework, based in behavioral economic theory, that may explain the current failures of ADs and point to potential solutions. Specifically, it discusses how five well-described cognitive biases that pervade human decision making (affective forecasting errors, optimism bias, present-biased preferences, focusing effects, and default options) may account for deficiencies in the uptake, efficacy, and patient-centeredness of ADs. The text suggests potential solutions in need of evaluation, discusses metrics for assessing these interventions' benefits, and considers alternatives to the approaches advocated.

 
  • References

  • 1 Fields MJ, Cassel CK. Approaching Death, Improving Care at the End of Life. Washington, DC: National Academy Press; 1997
  • 2 Time Magazine/SRBI. March 22–24, 2005. Survey. http://www.srbi.com/TimePoll-Final_Report-2005-03-25.pdf . Accessed August 2, 2011
  • 3 Angus DC, Barnato AE, Linde-Zwirble WT , et al; Robert Wood Johnson Foundation ICU End-Of-Life Peer Group. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 2004; 32 (3) 638-643
  • 4 Facts on dying. 2001. http://www.chcr.brown.edu/dying/2001DATA.HTM . Accessed July 9, 2012
  • 5 National Mortality Followback Survey. 1998. http://www.cdc.gov/nchs/pressroom/98facts/93nmfs.htm . Accessed July 9, 2012
  • 6 Hogan C, Lunney J, Gabel J, Lynn J. Medicare beneficiaries' costs of care in the last year of life. Health Aff (Millwood) 2001; 20 (4) 188-195
  • 7 Hoover DR, Crystal S, Kumar R, Sambamoorthi U, Cantor JC. Medical expenditures during the last year of life: findings from the 1992-1996 Medicare current beneficiary survey. Health Serv Res 2002; 37 (6) 1625-1642
  • 8 Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol 2010; 28 (29) 4457-4464
  • 9 Wright AA, Zhang BH, Ray A , et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300 (14) 1665-1673
  • 10 Temel JS, Greer JA, Muzikansky A , et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363 (8) 733-742
  • 11 Bakitas M, Lyons KD, Hegel MT , et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 2009; 302 (7) 741-749
  • 12 Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 2007; 33 (3) 238-246
  • 13 Azoulay E, Pochard F, Kentish-Barnes N , et al; FAMIREA Study Group. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 2005; 171 (9) 987-994
  • 14 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345
  • 15 Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med 2011; 154 (5) 336-346
  • 16 Silveira MJ, Kim SYH, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010; 362 (13) 1211-1218
  • 17 Knaus WA, Connors AF, Dawson NV , et al; The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274 (20) 1591-1598
  • 18 Lynn J, Teno JM, Phillips RS , et al; SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Perceptions by family members of the dying experience of older and seriously ill patients. Ann Intern Med 1997; 126 (2) 97-106
  • 19 Curtis JR, Nielsen EL, Treece PD , et al. Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J Respir Crit Care Med 2011; 183 (3) 348-355
  • 20 Perkins HS. Controlling death: the false promise of advance directives. Ann Intern Med 2007; 147 (1) 51-57
  • 21 Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep 2004; 34 (2) 30-42
  • 22 Molloy DW, Guyatt GH, Russo R , et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283 (11) 1437-1444
  • 23 Degenholtz HB, Rhee Y, Arnold RM. Brief communication: the relationship between having a living will and dying in place. Ann Intern Med 2004; 141 (2) 113-117
  • 24 Lo B, Steinbrook R. Resuscitating advance directives. Arch Intern Med 2004; 164 (14) 1501-1506
  • 25 Allais M. Le comportement de l'homme rationnel devant le risque: critique des postulats et axiomes de l'école Américaine. Econometrica 1953; 21: 503-546
  • 26 Tversky A, Kahneman D. Judgment under Uncertainty: Heuristics and Biases. Science 1974; 185 (4157) 1124-1131
  • 27 Tversky A, Kahneman D. The framing of decisions and the psychology of choice. Science 1981; 211 (4481) 453-458
  • 28 Kahneman D, Knetsch JL, Thaler RH. Anomalies: the endowment effect, loss aversion, and status-quo bias. J Econ Perspect 1991; 5: 193-206
  • 29 Loewenstein G, Prelec D. Anomalies in Intertemporal Choice - Evidence and an Interpretation. Q J Econ 1992; 107: 573-597
  • 30 Camerer C, Issacharoff S, Loewenstein G, O'Donoghue T, Rabin M. Regulation for conservatives: Behavioral economics and the case for asymmetric paternalism. Univ PA Law Rev 2003; 151: 1211-1254
  • 31 Swindell JS, McGuire AL, Halpern SD. Shaping patients' decisions. Chest 2011; 139 (2) 424-429
  • 32 Slovic P. The construction of preference. Am Psychol 1995; 50: 364-371
  • 33 Swindell JS, McGuire AL, Halpern SD. Beneficent persuasion: techniques and ethical guidelines to improve patients' decisions. Ann Fam Med 2010; 8 (3) 260-264
  • 34 Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010; 153 (4) 256-261
  • 35 Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA 2005; 294 (3) 359-365
  • 36 Fried TR, Bullock K, Iannone L, O'Leary JR. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc 2009; 57 (9) 1547-1555
  • 37 Back AL, Arnold RM, Baile WF , et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med 2007; 167 (5) 453-460
  • 38 Back AL, Arnold RM, Tulsky JA, Baile WF, Fryer-Edwards KA. Teaching communication skills to medical oncology fellows. J Clin Oncol 2003; 21 (12) 2433-2436
  • 39 Lo B, Ruston D, Kates LW , et al; Working Group on Religious and Spiritual Issues at the End of Life. Discussing religious and spiritual issues at the end of life: a practical guide for physicians. JAMA 2002; 287 (6) 749-754
  • 40 Lee Char SJ, Evans LR, Malvar GL, White DB. A randomized trial of two methods to disclose prognosis to surrogate decision makers in intensive care units. Am J Respir Crit Care Med 2010; 182 (7) 905-909
  • 41 Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest 2008; 134 (4) 835-843
  • 42 Evans LR, Boyd EA, Malvar G , et al. Surrogate decision-makers' perspectives on discussing prognosis in the face of uncertainty. Am J Respir Crit Care Med 2009; 179 (1) 48-53
  • 43 Johnson SK, Bautista CA, Hong SY, Weissfeld L, White DB. An empirical study of surrogates' preferred level of control over value-laden life support decisions in intensive care units. Am J Respir Crit Care Med 2011; 183 (7) 915-921
  • 44 Lautrette A, Darmon M, Megarbane B , et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007; 356 (5) 469-478
  • 45 White DB, Evans LR, Bautista CA, Luce JM, Lo B. Are physicians' recommendations to limit life support beneficial or burdensome? Bringing empirical data to the debate. Am J Respir Crit Care Med 2009; 180 (4) 320-325
  • 46 Ubel PA, Loewenstein G, Schwarz N, Smith D. Misimagining the unimaginable: the disability paradox and health care decision making. Health Psychol 2005; 24 (4, Suppl) S57-S62
  • 47 Halpern J, Arnold RM. Affective forecasting: an unrecognized challenge in making serious health decisions. J Gen Intern Med 2008; 23 (10) 1708-1712
  • 48 Weinstein ND. Unrealistic optimism about future life events. J Pers Soc Psychol 1980; 39: 806-820
  • 49 Moorman SM, Carr D. Spouses' effectiveness as end-of-life health care surrogates: accuracy, uncertainty, and errors of overtreatment or undertreatment. Gerontologist 2008; 48 (6) 811-819
  • 50 Seckler AB, Meier DE, Mulvihill M, Paris BEC. Substituted judgment: how accurate are proxy predictions?. Ann Intern Med 1991; 115 (2) 92-98
  • 51 Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006; 166 (5) 493-497
  • 52 Laibson D. Golden eggs and hyperbolic discounting. Q J Econ 1997; 112: 443-477
  • 53 Burt RA. Death Is That Man Taking Names. Berkeley: University of California Press; 2004
  • 54 Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. JAMA 2000; 284 (19) 2502-2507
  • 55 Kahneman D, Krueger AB, Schkade D, Schwarz N, Stone AA. Would you be happier if you were richer? A focusing illusion. Science 2006; 312 (5782) 1908-1910
  • 56 Schkade DA, Kahneman D. Does living in California make people happy? A focusing illusion in judgments of life satisfaction. Psychol Sci 1998; 9: 340-346
  • 57 Terry PB, Vettese M, Song J , et al. End-of-life decision making: when patients and surrogates disagree. J Clin Ethics 1999; 10 (4) 286-293
  • 58 Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn DC. Reconceptualizing advance care planning from the patient's perspective. Arch Intern Med 1998; 158 (8) 879-884
  • 59 Mead GE, O'Keeffe ST, Jack CIA, Maèstri-Banks AM, Playfer JR, Lye M. What factors influence patient preferences regarding cardiopulmonary resuscitation?. J R Coll Physicians Lond 1995; 29 (4) 295-298
  • 60 Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284 (19) 2476-2482
  • 61 Halpern SD, Ubel PA, Asch DA. Harnessing the power of default options to improve health care. N Engl J Med 2007; 357 (13) 1340-1344
  • 62 Loewenstein G, Brennan T, Volpp KG. Asymmetric paternalism to improve health behaviors. JAMA 2007; 298 (20) 2415-2417
  • 63 Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care—a case for greater use. N Engl J Med 1991; 324 (13) 889-895
  • 64 Loewenstein G. Projection bias in medical decision making. Med Decis Making 2005; 25 (1) 96-105
  • 65 Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 2007; 55 (2) 189-194
  • 66 Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play?. J Clin Epidemiol 1992; 45 (9) 941-950
  • 67 Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med 1989; 4 (1) 23-30
  • 68 Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, Tritchler DL, Till JE. Cancer patients: their desire for information and participation in treatment decisions. J R Soc Med 1989; 82 (5) 260-263
  • 69 Strack F, Martin LL, Schwarz N. Priming and Communication - Social Determinants of Information Use in Judgments of Life Satisfaction. Eur J Soc Psychol 1988; 18: 429-442
  • 70 Schwarz N, Strack F, Mai HP. Assimilation and Contrast Effects in Part-Whole Question Sequences - a Conversational Logic Analysis. Public Opin Q 1991; 55: 3-23
  • 71 Smith DM, Schwarz N, Roberts TR, Ubel PA. Why are you calling me? How study introductions change response patterns. Qual Life Res 2006; 15 (4) 621-630
  • 72 Roter DL, Larson S, Fischer GS, Arnold RM, Tulsky JA. Experts practice what they preach: A descriptive study of best and normative practices in end-of-life discussions. Arch Intern Med 2000; 160 (22) 3477-3485
  • 73 Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians communicate about advance directives?. Ann Intern Med 1998; 129 (6) 441-449
  • 74 Sharot T, Riccardi AM, Raio CM, Phelps EA. Neural mechanisms mediating optimism bias. Nature 2007; 450 (7166) 102-105
  • 75 Armor DA, Taylor SE. When Predictions Fail: The Dilemma of Unrealistic Optimism. In: Gilovich T, Griffin D, Kahneman D, eds. Heuristics and biases: The psychology of intuitive judgment. Cambridge, UK: Cambridge University Press; 2002
  • 76 Ritov I, Baron J. Status quo and omission biases. J Risk Uncertain 1992; 5: 49
  • 77 Samuelson W, Zeckhauser R. Status quo bias in decision making. J Risk Uncertain 1988; 1: 7-59
  • 78 Choi JJ, Laibson D, Madrian BC, Metrick A. Defined contribution pensions: plan rules, participant decisions, and the path of least resistance. In: Poterba JM, ed. Tax Policy and the Economy. Vol 16. Cambridge, MA: MIT Press; 2002: 67-113
  • 79 Madrian BC, Shea DF. The power of suggestion: Inertia in 401(k) participation and savings behavior. Q J Econ 2001; 116: 1149-1187
  • 80 Johnson EJ, Hershey JC, Meszaros J, Kunreuther H. Framing, probability distortions, and insurance decisions. J Risk Uncertain 1993; 7: 35-51
  • 81 Johnson EJ, Goldstein D. Medicine. Do defaults save lives?. Science 2003; 302 (5649) 1338-1339
  • 82 Horvat LD, Cuerden MS, Kim SJ, Koval JJ, Young A, Garg AX. Informing the debate: rates of kidney transplantation in nations with presumed consent. Ann Intern Med 2010; 153 (10) 641-649
  • 83 Kressel LM, Chapman GB, Leventhal E. The influence of default options on the expression of end-of-life treatment preferences in advance directives. J Gen Intern Med 2007; 22 (7) 1007-1010
  • 84 Kressel LM, Chapman GB. The default effect in end-of-life medical treatment preferences. Med Decis Making 2007; 27 (3) 299-310
  • 85 Torke AM, Sachs GA, Helft PR , et al. Timing of do-not-resuscitate orders for hospitalized older adults who require a surrogate decision-maker. J Am Geriatr Soc 2011; 59 (7) 1326-1331
  • 86 Five Wishes. Accessed July 26, 2011, at http://www.agingwithdignity.org/five-wishes.php .
  • 87 Powe NA, Bateman IJ. Ordering effects in nested ‘top-down’ and ‘bottom-up’ contingent valuation designs. Ecol Econ 2003; 45: 255-270
  • 88 Kahneman D, Knetsch JL. Valuing public goods: the purchase of moral satisfaction. J Environ Econ Manage 1992; 22: 55-70
  • 89 Carmon Z, Wertenbroch K, Zeelenberg M. Option attachment: When deliberating makes choosing feel like losing. J Consum Res 2003; 30: 15-29
  • 90 Carroll GD, Choi JJ, Laibson D, Madrian BC, Metrick A. Optimal Defaults and Active Decisions. Q J Econ 2009; 124 (4) 1639-1674
  • 91 Knottnerus JA, Bouter LM. The ethics of sample size: two-sided testing and one-sided thinking. J Clin Epidemiol 2001; 54 (2) 109-110
  • 92 Garland A, Connors AF. Physicians' influence over decisions to forego life support. J Palliat Med 2007; 10 (6) 1298-1305
  • 93 Malloy TR, Wigton RS, Meeske J, Tape TG. The influence of treatment descriptions on advance medical directive decisions. J Am Geriatr Soc 1992; 40 (12) 1255-1260