REFERENCES
- Field MJ, Cassel CK, eds. Approaching Death: Improv-ing Care at the End of Life. Washington, DC: National Academy Press; 1997.
- In a 1993 study of ICU deaths, this proportion was 90%. Luce JM, Prendergast TJ. The changing nature of death in the ICU. In: Curtis JR, Rubenfield GD, eds. Managing Death in the ICU: The Transition from Cure to Comfort. New York: Oxford University Press; 2001:19–29.
- American Psychological Association Working Group on Assisted Suicide and End-of-Life Decisions. Report to the Board of Directors. Washington, DC: APA; 2000.
- Smedira NG, Evans BH, Grais LS, et al. Withholding and withdrawal of life support from the critically ill. New Engl J Med. 1990;322(5):309–315.
- For excellent critiques of the difficulties of living wills and other forms of advanced directives, see refs. 6 and 7.
- Fagerlin A, Schneider CE. Enough: the failure of the living will. Hastings Cent Rep. 2004;34(2):30–42.
- Ditto PH, Hawkins NA, Pizarro DA. Imagining the end of life: on the psychology of advance medical decision making. Motivation Emotion. 2005;29(4): 475–496.
- Inspired by Homer's tale of Ulysses, who asked his crew to bind him to the mast of his ship (and bind him even tighter if he pleaded for release) as it passed the island of the Sirens, so that he would not be lured to his death. So-called "Ulysses contracts" have been proposed as a way for the "present self" to control the "future self." For example, individuals with recurrent mental disorders may execute an irrevocable contract when they are in remission that binds them for specific treatment or institutionaliza-tion when they suffer a relapse, even if their relapsed self adamantly refuses such treatment. See ref. 9.
- Dresser R. Bound to treatment: the Ulysses contract. Hastings Cent Rep. 1984;14(3):13–16.
- Elster J. Ulysses and the Sirens (rev. ed.). Cambridge: Cambridge University Press; 1984.
- The contractual approach, especially favored among economists, is captured in a literature on "multiple selves." See refs. 12 and 13.
- Strotz RH. Myopia and inconsistency in dynamic util-ity maximization. Rev Econ Stud. 1956(23):165–180.
- Schelling TC. Choice and Consequence: Perspectives of an Errant Economist. Cambridge: Harvard Univer-sity Press; 1984.
- In a book about aging, for example, Richard Posner [see ref. 15] writes variously about "two or more persons 'time-sharing' the same identity" or body, about "continuous" vs. "punctuated" selfhood, or about a "master self" integrating or "bargaining among the successive selves." For many econo-mists, the dilemma is how various chronological selves with incompatible interests protect those in-terests from those of other selves - for example, how to get young selves to save money or engage in healthy lifestyles for the benefit of older selves, or how younger competent selves try to ensure that their preferences about how they want to be treated if they suffer dementia or life-threatening illness will be honored, even if incompatible with those of their demented or even predemented selves. Strategies of precommitment - of which Ulysses contracts are an example - provide a solution, at least in theory.
- Posner RA. Aging and Old Age. Chicago: University of Chicago Press; 1995.
- Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press; 1989.
- Schneider CE. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press; 1998.
- Illinois surrogacy statutes, which are fairly typical of those of many states, specify a priority order for choosing surrogates that begins with the patient's guardian of the person and is followed by the patient's spouse, any adult son or daughter, either parent, any adult brother or sister, any adult grand-child, a close friend of the patient, and the patient's guardian of the estate. Some states do not specify a priority order and anyone willing may serve. When no one is available to serve as a surrogate, the courts will appoint a guardian (or conservator in some jurisdictions). See ref. 22, sec. 25.
- In the Matter of Benjamin R. Carson, as Committee of the Person and Property of Jacqueline J. Carson, an Incompetent Person. [In re Carson, 39 Misc. 2d, 544, 241 N.Y. S. 2d 288 (1962).] Supreme Court of New York, Special Term, Ulster County; 1962.
- Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients: an ethical and empirical analysis. JAMA. 1992;267:2067–2071.
- For example, Ilinois statute dictates: "A surrogate decision maker shall make decisions for the adult patient conforming as closely as possible to what the patient would have done or intended under the circumstances, taking into account evidence that includes, but is not limited to, the patient's per-sonal, philosophical, religious and moral beliefs and ethical values relative to the purpose of life, sickness, medical procedures, suffering, and death. Where possible, the surrogate shall determine how the pa-tient would have weighed the burdens and benefits of initiating or continuing life-sustaining treatment against the burdens and benefits of that treatment." See ref. 22, sec. 20.
- Illinois Health Care Surrogate Act. 755 ILCS 40.
- Some surrogates embrace a "reasonable person" standard to identify our best interests, choosing what they believe most people would choose for themselves. Others advocate the use of "commu-nity-based" standards [see ref. 20]. On a variation on this theme, one legal scholar suggests a "constructive preference" approach when surrogates cannot ascertain our preferences. Data would be collected on "widespread preferences of competent people" and, where there is strong consensus, would serve as a default rule (except for those of us whose personal values and preferences deviate from prevailing norms) [see ref. 24, p. 1220]. Other aca-demics propose formulating an algorithm or actu-arial or mathematical model that predicts what a patient would want, based on ethnic or cultural background, religion, religiosity, and so forth [see ref. 7].
- Cantor NL. Discarding substituted judgment and best interests: toward a constructive preference standard for dying, previously competent patients without advance instructions. Rutgers Law Review. 1996;48:1193–1272.
- "The Newlywed Game was an American television game show where newly-married couples answered questions to find out how well the husband and wife knew each other. ...[T]he show became famous for some of the arguments that couples had over incor-rect answers and even led to some divorces" [see ref. 26].
- Available at: http://en.wikipedia.org/wiki/The_Newlywed_Game.
- Rubenstein LZ, Schairer C, Wieland GD, Kane R. Systematic biases in functional status assessment of elderly adults: effects of different data sources. Gerontol. 1984;39:686–691.
- Magaziner J, Simonsick EM, Kashner TM, Hebei JR. Patient-proxy response comparability on measures of patient health and functional status. J Clin Epidemiol. 1988;33:1065–1074.
- Uhlmann RF, Pearlman RA, Cain KC. Physicians' and spouses' predictions of elderly patients' resuscita-tion preferences. J Gerontol: Med Sci. 1988;43: M115–121.
- Epstein AM, Hall JA, Tognetti J, Son LH, Conant. L. Using proxies to evaluate quality of life: Can they provide valid information about patients' health sta-tus and satisfaction with medical care? Med Care. 1989;27:S91–S98.
- Ouslander JG, Tymchuk AJ, Rahbar B. Health care decisions among elderly long-term care residents and their potential proxies. Arch Intern Med. 1989;149:1367–1372.
- Zweibel NR, Cassel CK. Treatment choices at the end of life: a comparison of decisions by older pa-tients and their physician-selected proxies. Geron-tologist. 1989;29:615–621.
- Tomlinson T, Howe K, Notman M, Rossmiller D. An empirical study of proxy consent for elderly persons. Gerontologist. 1990;30:54–64.
- Hawkins NA, Ditto PH, Danks JFI, Smucker WD. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005;45(1):107–117.
- Shalowitz DI, Garrett-Mayer E, Wendler D. The ac-curacy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493–497.
- These data come from the Study to Understand Prognoses, and Preferences for Outcomes and Risks of Treatments [SUPPORT] and the Hospitalized Eld-erly Longitudinal Project [HELP], studies of more than 9000 critically-ill patients with a projected 6-month mortality rate of 50%, hospitalized across five teaching hospitals (SUPPORT) or 11 76 patients, 80 years old or older, regardless of prognosis, who were hospitalized at one of four teaching hospitals (HELP) and/or their surrogates. As of 2005, there had been 183 articles published that presented pri-mary or secondary analysis of the SUPPORT or HELP data. For a description of the method, see ref. 37. For an overview of the findings, see ref. 38. For a critical review of the impact of the study, see the articles in ref. 39, a special issue of the Hastings Center Report.
- Murphy DJ, Cluff LE. SUPPORT: Study to Under-stand Prognoses and Preferences for Outcomes and Risks of Treatments, study design. 1 Clin Epidemiol. 1990;43:iS–123S.
- Lynn J. Unexpected returns: insights from SUPPORT. In: Isaacs SL, Knickman JR, eds. To Improve Health and Health Care: The Robert Wood Johnson Founda-tion Anthology. New York: Jossey-Bass Health Series; 1997:161–186.
- Dying well in the hospital: the lessons of SUPPORT. Hastings Cent Rep. 1995(Nov/Dec).
- Surrogates tend to underestimate patients' satisfaction with their current state of health and therefore express greater willingness than the patients to give up months of life in the patients' current state of health for a shorter life in excellent health [see ref. 41].
- Tsevat J, Cook EF, Green ML, et al. Health values of the seriously ill. Ann Intern Med. 1995;122(7):514–520.
- Covinsky KH, Fuller JD, Yaffe K, et al. Communica-tion and decision-making in seriously ill patients: findings of the SUPPORT project. J Am Geriatr Soc. 2000;48(5):S187–193.
- Guthiel TG, Appelbaum PS. Substituted judgment: best interests in disguise. Hastings Cent Rep. 1983;13:8–11.
- Ross L, Greene D, House P. The false consensus effect: an egocentric bias in social perception and attribution processes. J Exper Social Psycho/. 1977; 13:279–301.
- Marks G, Miller N. Ten years of research on the false-consensus effect: an empirical and theoretical re-view. Psychological Bull. 1987;102:72–90.
- Fagerlin and Schneider cite a memoir in which the writer observes that he "quickly learned [that] can-cer, even more than polio, has a disarming way of bargaining downward, beginning with your whole estate and then letting you keep the game warden's cottage or badminton court; and by the time it has tried to frighten you to death and threatened to take away your very existence, you'd be amazed at how little you're willing to settle for" [see ref. 6, p. 34].
- As Buchanan and Brock observed, "...the active forty-year-old professor who relishes enjoyments re-quiring complex cognitive and social skills may be unable to appreciate adequately the less sophisti-cated pleasures and enjoyment that would consti-tute his or her well-being were he or she to suffer serious loss of some higher brain function due to stroke or other illness" [see ref. 16, p. 106].
- Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet. 1999;354: 816–819.
- Krumholz HM, Phillips RS, Hamel MB, et al. Resusci-tation preferences among patients with severe con-gestive heart failure: results from the SUPPORT project. Circulation. 1998;98(7):648–655.
- Kirschner KL. When written advance directives are not enough. Clin Geriatr Med. 2005;21:193–209.
- Ditto PH, Jacobson JA, Smucker WD, Danks IFI, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustain-ing treatment preferences. Med Decision Making. 2006;26(4):313–322.
- One study of mentally competent terminal cancer patients admitted to palliative care found, for ex-ample, that, in the last few weeks of their lives, their own assessment of their will to live varied widely. Although average changes in their will to live were quite small, the maximum change over a 12-hour period fluctuated 33%; over a week, nearly 50%; and over a 30-day period, 68% [see ref. 48]. The SUPPORT study found that between the time of hospitalization and 2 months after hospitalization, 15% of patients initially preferring CPR and 31% of patients initially refusing CPR had reversed their preference [see ref. 42].
- Dresser R. Life, death, and incompetent patients: conceptual infirmities and hidden values in the law. Ariz Law Rev. 1986;28:373–405.
- Wilson-FD, Gilbert DT. Affective forecasting. Know-ing what to want. Curr Dir Psycho' Sci. 2005;14(3): 131–134.
- Gertner J. The futile pursuit of happiness. New York Times Magazine. September 7, 2003.
- In constructing and evaluating substituted judg-ments, one might ask how many different sources of evidence are available; how reliable is the evidence; how consistent is it; how specific was our statement or reference; how unequivocal was it; in what con-text was it made; to whom was it made; was it a statement made about ourselves or about someone else; how casual or off-handed was it; how sincere was it; are there reasons to discount or disbelieve the statement; how often did we make it and over what period of time; how recently did we make it; have our views changed over time; are our state-ments consistent with our behavior; how directly does the evidence bear on the decision to be made on our behalf; how great is the inferential leap; do most of our significant others make the same infer-ence about the evidence?
- Beschle DL. Autonomous decision-making and so-cial choice: examining the "right to die." Ky Law J. 1989;77:319–367.
- Ditto et al. argue that "people will often mispredict their future wishes because they (a) have inaccurate beliefs about life-sustaining medical treatments, (b) fail to appreciate how their current physical and emotional state affects their predictions about fu-ture states, (c) under-appreciate how well they will cope with serious illness, and (d) weigh certain as-pects of information differently when making deci-sions about immediate and more distant futures" [see ref. 7, pp. 493–494].
- Russ AJ, Kaufman SR. Family perceptions of progno-sis, silence, and the "suddenness" of death. Cult Med Psychiatry. 2005;29:103–123.
- Christakis NA. Death Foretold: Prophecy and Progno-sis in Medical Care. Chicago: University of Chicago Press; 1999.
- Drought TS, Koenig BA. "Choice" in end-of-life de-cision making: researching fact or fiction? Gerontolo-gist. 2002;42:114-128.
- For example, recently a surrogate in my field re-search rescinded a DNR order so that the patient could be emergently intubated, then reinstated the DNR order a day later, with the concurrence of the now-competent patient, after she was extubated. (She died a few days later, though not of cardiac arrest or respiratory failure.)
- Kirschner K, Mukherjee D, Savage T, Brashler R. Mapping the moral landscape: families and persons with traumatic brain injury. Brain In J Source. 2003;6(4).
- Lipkin KM. Identifying a proxy for health care as part of routine medical inquiry. J Gen Intern Med. 2006; 21:1188–1191.
- One study found that a higher proportion of pa-tients expect their surrogate to decide alone than their corresponding surrogates felt appropriate [see ref. 34].
- Fagerlin A, Ditto PH, Danks JH, Houts RM, Smucker WD. Projection in surrogate decisions about life-sustaining medical treatments. Health Psycho!. 2001;20(3):166–175.
- Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resus-citation decisions for them: observations from SUP-PORT and HELP. J Am Geriatr Soc. 2000;48(5):584–S90.
- Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992;267:59–63.
- Terry P, Vettese M, Song J, et al. End-of-life decision making: when patients and surrogates disagree.__ Clin Ethics. 1999;10(4):286–293.
- Shapiro SP. Tangled Loyalties: Conflicts of Interest in the Private Practice of Law. Ann Arbor: University of Michigan Press; 2002.
- Rhoden NK. Litigating life and death. Harvard Law Rev. 1988;102:375–446.
- Fentiman LC. Privacy and personhood revisited: a new framework for substitute decision-making for the incompetent, incurably ill adult. George Wash-ington Law Rev. 1989;57:801–848.
- Friedman and Savage, who examined conservator-ship files in California, expressed their suspicion that some conservators "tended to act as if the money belonged to them. After all, they are often the heirs of the ward; they are waiting in the wings and see no harm in treating the money as if it were already theirs" [see ref. 74, p. 285].
- Friedman LM, Savage M. Taking care: the law of conservatorship in California. South California Law Rev. 1988;61:273–290.
- Note that some bioethicists will reject the notion of conflict of interest as an appropriate lens through which to view surrogate decision-making [see ref. 76]. They argue that, within families, interests are profoundly intertwined and not in opposition in the way contemplated by the notion of disinterested-ness. Indeed, they will point to the fact that many patients express that their highest priority is that they not be a burden on their families [see ref. 34]. But, again, some patients feel that way and others clearly do not.
- Kuczewski MG. Reconceiving the family: the process of consent in medical decisionmaking. Hastings Cent Rep. 1996;26:30–37.
- Swigart VA. A Study of Family Decision-making About Life Support Using the Grounded Theory Method [dis-sertation]. Pittsburgh, Pennsylvania: School of Nurs-ing, University of Pittsburgh; 1994.
- Swigart VA, Lidz C, Butterworth V, Arnold R. Letting go: family willingness to forgo life support. Heart Lung. 1996;25(6):483–494.
- Kirchhoff KT, Walker L, Hutton A, Spuhler V, Cole BV, Clemmer T. The vortex: families' experiences with death in the intensive care unit. Am J Crit Care. 2002;11(3):200–209.
- Tilden VP, Tolle SW, Nelson CA, Fields J. Family decision-making to withdraw life-sustaining treat-ments from hospitalized patients. Nurs Res. 2001;50(2):105–115.
- Hayes C. Surrogate decision-making to end life-sustaining treatments for incapacitated adults. Hosp Palliat Nurs. 2003;5(2):91–102.
- Mick KA, Medvene LJ, Strunk JH. Surrogate decision making at end of life: sources of burden and relief. J Loss Trauma. 2003;8:149–167.
- Kaufman SR. ...And a Time to Die: How American Hospitals Shape the End of Life. New York: Scribner; 2005.
- Hiltunen EF, Medich C, Chase S, Peterson L, Forrow L. Family decision making for end-of-life treatment: the SUPPORT nurse narratives. J Clin Ethics. 1999;10(2):126–134.
- Slomka J. The negotiation of death: clinical decision making at the end of life. Social Sci Med. 1992;35:251–259.
- Curtis JR, Engelberg RA, Wenrich MD, et al. Study-ing communication about end-of-life care during the ICU Family Conference: development of a framework. J Crit Care. 2002;17(3):147–160.
- White DB, Engelberg RA, Wenrich MD, Lo B, Curtis JR. Prognostication during physician-family discus-sions about limiting life support in intensive care units. Crit Care Med. 2007;35(2):442–448.