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April 15, 1992, Vol 267, No. 15 >
ARTICLE | April 15, 1992

Proxy Decision Making for Incompetent Patients: Title and subTitle BreakAn Ethical and Empirical Analysis FREE

Ezekiel J. Emanuel, MD, PhD; Linda L. Emanuel, MD, PhD
[+] Author Affiliations

Reprint requests to Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115 (Dr E. J. Emanuel).


JAMA. 1992;267(15):2067-2071. doi:10.1001/jama.1992.03480150073040
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References

RECENTLY, proxy or surrogate decision making regarding the termination of life-sustaining interventions for incompetent patients has been widely endorsed and promoted. After the Cruzan decision and the Patient Self-Determination Act of 1990, many states enacted proxy statutes specifically for health care. Indeed, even states such as New York and Massachusetts, which in the past had avoided enacting any legislation on living wills and securing the rights of patients, have quickly adopted

See also pp 2082 and 2101. health care proxy laws. Simultaneously with this growing enthusiasm for proxy decision making have arisen ethical and empirical doubts about whether proxies can select interventions that the patient would have selected. These divergent trends confront us just as there is a growing need to develop policies on this issue. Consequently, it is important to examine several questions on proxy decision making: How widely endorsed is proxy decision making? What is the justification of

REFERENCES

1 +
In re Quinlan, 70 NJ 10 (1976).
2 +
Relman AS.  Michigan's sensible 'living will.' N Engl J Med . 1979;;300:1270-1272.
3 +
Steinbrook R, Lo B.  Decision-making for incompetent patients by designated proxy: California's new law. N Engl J Med . 1984;;310:1598-1601.
4 +
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment . Washington, DC: US Government Printing Office; 1983;: chap 4 .
5 +
Areen J.  The legal status of consent obtained from families of adult patients to withhold or withdraw treatment. JAMA . 1987;;258:229-235.
6 +
In re Spring, 380 Mass 629 (1980).
7 +
In re Colyer, 99 Wash2d 114 (1983).
8 +
Brophy v New England Sinai Hospital, 398 Mass 417 (1986).
9 +
Corbett v D'Alessandro, 487 So2d 368 (1986).
10 +
In re Peter, 108 NJ 365 (1987).
11 +
Emanuel EJ.  A review of the ethical and legal aspects of terminating care. Am J Med . 1988;;84:291-301.
12 +
Annas GJ.  The health care proxy and the living will. N Engl J Med . 1991;;324:1210-1213.
13 +
Cruzan v Director, Missouri Department of Health, 110 SCt 2841 (1990).
14 +
Cruzan v Director, Missouri Department of Health, 110 SCt 2841 (1990) (Justice O'Connor's concurring opinion).
15 +
Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent . New York, NY: New York State Task Force on Life and the Law; 1987;: chap 4 .
16 +
Lynn J.  Why I don't have a living will. Law Med Health Care . 1991;;19:101-104.
17 +
In re Jobes, 108 NJ 394 (1987).
18 +
Superintendent of Belchertown State School v Saikewicz, 373 Mass 728 (1977).
19 +
Buchanan AE, Brock DW. Deciding for Others . New York, NY: Cambridge University Press; 1989;: chap 2 .
20 +
Newman SA.  Treatment refusals for the critically and terminally ill: proposed rules for the family, the physician, and the state, III. N Y L S Hum Rights Annual . 1985;;3:35-89.
21 +
Minow M.  Beyond state intervention in the family: for Baby Jane Doe. U Mich J Law Reform . 1985;; 18:972.
22 +
Emanuel EJ.  What criteria should guide decision makers for incompetent patients? Lancet . 1988;;1:169-170.
23 +
Gutheil TG, Appelbaum PS.  Substituted judgment: best interests in disguise. Hastings Cent Rep . 1983;;13:8-11.
24 +
Lane v Candura, 376 NE2d 1232 (1978).
25 +
LaPuma J, Schiedermayer DL, Toulmin S, Miles SH, McAtee JA.  The standard of care: a case report and ethical analysis. Ann Intern Med . 1988;;108:121-124.
26 +
Lee MA, Berry K.  Abuse of durable power of attorney for health care: case report. J Am Geriatr Soc . 1991;;39:806-809.
27 +
Steiber SR.  Right to die: public balks at deciding for others. Hospitals . (March 5) , 1987;;61:72.
28 +
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;;324:889-895.
29 +
Uhlmann RF, Pearlman RA, Cain KC.  Physicians' and spouses predictions of elderly patients' resuscitation preferences. J Gerontol . 1988;;43( (suppl) ):M115-M121.
30 +
Seckler AB, Meier DE, Mulvihill M, Cammer Paris BE.  Substituted judgment: how accurate are proxy predictions? Ann Intern Med . 1991;;115:92-98.
31 +
Lo B, McLeod GA, Saika G.  Patient attitudes to discussing life-sustaining treatment. Arch Intern Med . 1986;;146:1613-1615.
32 +
Cohen-Mansfield J, Rabinovich BA, Lipson S, et al.  The decision to execute a durable power of attorney for health care and preferences regarding the utilization of life-sustaining treatments in nursing home residents. Arch Intern Med . 1991;;151: 289-294.
33 +
Gamble ER, McDonald PJ, Lichstein PR.  Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch Intern Med . 1991;;151:277-280.
34 +
Diamond EL, Jernigan JA, Moseley RA, Messina V, McKeown RA.  Decision-making ability and advance directive preferences in nursing home patients and proxies. Gerontologist . 1989;;29:622-626.
35 +
High DM.  All in the family: extended autonomy and expectations in surrogate health care decision-making. Gerontologist . 1988;;28( (suppl) ):S46-S51.
36 +
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 status and satisfaction with medical care? Med Care . 1989;;27( (suppl) ):S91-S98.
37 +
McCuskerJ.  Stoddard AM. Use of a surrogate for the Sickness Impact Profile. Med Care . 1984;;22:789-795.
38 +
Magaziner J, Simonsick EM, Kashner TM, Hebel JR.  Patient-proxy response comparability on measures of patient health and functional status. J Clin Epidemiol . 1988;;33:1065-1074.
39 +
Rubenstein LZ, Schairer C, Wieland GD, Kane R.  Systematic biases in functional status assessment of elderly adults: effects of different data sources. J Gerontol . 1984;;39:686-691.
40 +
Zweibel NR, Cassel CK.  Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist . 1989;;29:615-621.
41 +
Landis JR, Koch GG.  The measurement of observer agreement for categorical data. Biometrics . 1977;;33:159-174.
42 +
Tomlinson T, Howe K, Notman M, Rossmiller D.  An empirical study of proxy consent for elderly persons. Gerontologist . 1990;;30:54-61.
43 +
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.
44 +
Annas GJ.  The health care proxy and the living will. N Engl J Med . 1991;;325:894.
45 +
High DM.  A new myth about families of older people? Gerontologist . 1991;;31:611-618.
46 +
Buchanan AE.  The limits of proxy decision-making for incompetents. UCLA Law Rev . 1981;;29:393-408.
47 +
Emanuel EJ. The Ends of Human Life: Medical Ethics in a Liberal Policy . Cambridge, Mass: Harvard University Press; 1991;: chap 3 .
48 +
Arras J.  Toward an ethic of ambiguity. Hastings Cent Rep . 1984;;14:25-33.
49 +
Emanuel LL, Emanuel EJ.  The medical directive: a new comprehensive advance care document. JAMA . 1989;;261:3288-3293.
50 +
Emanuel EJ, Emanuel LL.  The health care proxy and the living will. N Engl J Med . 1991;;325: 893-894.
51 +
Orentlicher D.  Advance medical directives. JAMA . 1990;;263:2365-2367.
52 +
Silverstein MD, Stocking CB, Antel JP, Beck-with J, Roos RP, Siegler M.  Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making and life-sustaining therapy. Mayo Clin Proc . 1991;;66:906-913.
53 +
Everhart MA, Pearlman RA.  Stability of patient preferences regarding life-sustaining treatments. Chest . 1990;;97:159-164.
54 +
Danis M, Southerland LI, Garrett JM, et al.  A prospective study of advance directives for life-sustaining care. N Engl J Med . 1991;;324:882-888.
55 +
Emanuel EJ.  A communal vision of care for incompetent patients. Hastings Cent Rep . 1987;;17: 15-20.
56 +
Miles SH.  Informed demand for 'non-beneficial' medical treatment. N Engl J Med . 1991;;325:512-515.
57 +
Blackhall LJ.  Must we always use CPR? N Engl J Med . 1987;;317:1281-1285.

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Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature

Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal

1 +
In re Quinlan, 70 NJ 10 (1976).
2 +
Relman AS.  Michigan's sensible 'living will.' N Engl J Med . 1979;;300:1270-1272.
3 +
Steinbrook R, Lo B.  Decision-making for incompetent patients by designated proxy: California's new law. N Engl J Med . 1984;;310:1598-1601.
4 +
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment . Washington, DC: US Government Printing Office; 1983;: chap 4 .
5 +
Areen J.  The legal status of consent obtained from families of adult patients to withhold or withdraw treatment. JAMA . 1987;;258:229-235.
6 +
In re Spring, 380 Mass 629 (1980).
7 +
In re Colyer, 99 Wash2d 114 (1983).
8 +
Brophy v New England Sinai Hospital, 398 Mass 417 (1986).
9 +
Corbett v D'Alessandro, 487 So2d 368 (1986).
10 +
In re Peter, 108 NJ 365 (1987).
11 +
Emanuel EJ.  A review of the ethical and legal aspects of terminating care. Am J Med . 1988;;84:291-301.
12 +
Annas GJ.  The health care proxy and the living will. N Engl J Med . 1991;;324:1210-1213.
13 +
Cruzan v Director, Missouri Department of Health, 110 SCt 2841 (1990).
14 +
Cruzan v Director, Missouri Department of Health, 110 SCt 2841 (1990) (Justice O'Connor's concurring opinion).
15 +
Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent . New York, NY: New York State Task Force on Life and the Law; 1987;: chap 4 .
16 +
Lynn J.  Why I don't have a living will. Law Med Health Care . 1991;;19:101-104.
17 +
In re Jobes, 108 NJ 394 (1987).
18 +
Superintendent of Belchertown State School v Saikewicz, 373 Mass 728 (1977).
19 +
Buchanan AE, Brock DW. Deciding for Others . New York, NY: Cambridge University Press; 1989;: chap 2 .
20 +
Newman SA.  Treatment refusals for the critically and terminally ill: proposed rules for the family, the physician, and the state, III. N Y L S Hum Rights Annual . 1985;;3:35-89.
21 +
Minow M.  Beyond state intervention in the family: for Baby Jane Doe. U Mich J Law Reform . 1985;; 18:972.
22 +
Emanuel EJ.  What criteria should guide decision makers for incompetent patients? Lancet . 1988;;1:169-170.
23 +
Gutheil TG, Appelbaum PS.  Substituted judgment: best interests in disguise. Hastings Cent Rep . 1983;;13:8-11.
24 +
Lane v Candura, 376 NE2d 1232 (1978).
25 +
LaPuma J, Schiedermayer DL, Toulmin S, Miles SH, McAtee JA.  The standard of care: a case report and ethical analysis. Ann Intern Med . 1988;;108:121-124.
26 +
Lee MA, Berry K.  Abuse of durable power of attorney for health care: case report. J Am Geriatr Soc . 1991;;39:806-809.
27 +
Steiber SR.  Right to die: public balks at deciding for others. Hospitals . (March 5) , 1987;;61:72.
28 +
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;;324:889-895.
29 +
Uhlmann RF, Pearlman RA, Cain KC.  Physicians' and spouses predictions of elderly patients' resuscitation preferences. J Gerontol . 1988;;43( (suppl) ):M115-M121.
30 +
Seckler AB, Meier DE, Mulvihill M, Cammer Paris BE.  Substituted judgment: how accurate are proxy predictions? Ann Intern Med . 1991;;115:92-98.
31 +
Lo B, McLeod GA, Saika G.  Patient attitudes to discussing life-sustaining treatment. Arch Intern Med . 1986;;146:1613-1615.
32 +
Cohen-Mansfield J, Rabinovich BA, Lipson S, et al.  The decision to execute a durable power of attorney for health care and preferences regarding the utilization of life-sustaining treatments in nursing home residents. Arch Intern Med . 1991;;151: 289-294.
33 +
Gamble ER, McDonald PJ, Lichstein PR.  Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch Intern Med . 1991;;151:277-280.
34 +
Diamond EL, Jernigan JA, Moseley RA, Messina V, McKeown RA.  Decision-making ability and advance directive preferences in nursing home patients and proxies. Gerontologist . 1989;;29:622-626.
35 +
High DM.  All in the family: extended autonomy and expectations in surrogate health care decision-making. Gerontologist . 1988;;28( (suppl) ):S46-S51.
36 +
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 status and satisfaction with medical care? Med Care . 1989;;27( (suppl) ):S91-S98.
37 +
McCuskerJ.  Stoddard AM. Use of a surrogate for the Sickness Impact Profile. Med Care . 1984;;22:789-795.
38 +
Magaziner J, Simonsick EM, Kashner TM, Hebel JR.  Patient-proxy response comparability on measures of patient health and functional status. J Clin Epidemiol . 1988;;33:1065-1074.
39 +
Rubenstein LZ, Schairer C, Wieland GD, Kane R.  Systematic biases in functional status assessment of elderly adults: effects of different data sources. J Gerontol . 1984;;39:686-691.
40 +
Zweibel NR, Cassel CK.  Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist . 1989;;29:615-621.
41 +
Landis JR, Koch GG.  The measurement of observer agreement for categorical data. Biometrics . 1977;;33:159-174.
42 +
Tomlinson T, Howe K, Notman M, Rossmiller D.  An empirical study of proxy consent for elderly persons. Gerontologist . 1990;;30:54-61.
43 +
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.
44 +
Annas GJ.  The health care proxy and the living will. N Engl J Med . 1991;;325:894.
45 +
High DM.  A new myth about families of older people? Gerontologist . 1991;;31:611-618.
46 +
Buchanan AE.  The limits of proxy decision-making for incompetents. UCLA Law Rev . 1981;;29:393-408.
47 +
Emanuel EJ. The Ends of Human Life: Medical Ethics in a Liberal Policy . Cambridge, Mass: Harvard University Press; 1991;: chap 3 .
48 +
Arras J.  Toward an ethic of ambiguity. Hastings Cent Rep . 1984;;14:25-33.
49 +
Emanuel LL, Emanuel EJ.  The medical directive: a new comprehensive advance care document. JAMA . 1989;;261:3288-3293.
50 +
Emanuel EJ, Emanuel LL.  The health care proxy and the living will. N Engl J Med . 1991;;325: 893-894.
51 +
Orentlicher D.  Advance medical directives. JAMA . 1990;;263:2365-2367.
52 +
Silverstein MD, Stocking CB, Antel JP, Beck-with J, Roos RP, Siegler M.  Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making and life-sustaining therapy. Mayo Clin Proc . 1991;;66:906-913.
53 +
Everhart MA, Pearlman RA.  Stability of patient preferences regarding life-sustaining treatments. Chest . 1990;;97:159-164.
54 +
Danis M, Southerland LI, Garrett JM, et al.  A prospective study of advance directives for life-sustaining care. N Engl J Med . 1991;;324:882-888.
55 +
Emanuel EJ.  A communal vision of care for incompetent patients. Hastings Cent Rep . 1987;;17: 15-20.
56 +
Miles SH.  Informed demand for 'non-beneficial' medical treatment. N Engl J Med . 1991;;325:512-515.
57 +
Blackhall LJ.  Must we always use CPR? N Engl J Med . 1987;;317:1281-1285.

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