Hostname: page-component-745bb68f8f-d8cs5 Total loading time: 0 Render date: 2025-01-13T06:41:47.178Z Has data issue: false hasContentIssue false
  • English
  • Français

End-of-life decision-making in the United States

Published online by Cambridge University Press:  01 February 2008

R. D. Truog
R. D. Truog*
Affiliation:
Harvard Medical School, Division of Medical Ethics, Department of Social Medicine Children’s Hospital Boston, Division of Critical Care Medicine, Department of Anesthesia, Boston, MA, USA
*
Correspondance to: Robert D. Truog, MSICU Office, Children’s Hospital, 300 Longwood Avenue, Boston, MA 02115, USA. E-mail: robert.truog@childrens.harvard.edu; Tel: +1 617 432 6575; Fax: +1 617 734 3863
Get access

Summary

Decision-making at the end-of-life in the United States has evolved over the last 50 yr, beginning with the development of the concept of brain death as a criterion for permitting patients who are in a state of ‘irreversible coma’ to be considered as ‘dead’ for purposes of ventilator withdrawal and organ transplantation. Since then, a firm consensus has emerged in American law and ethics that ‘Patients have a virtually unlimited right to refuse any unwanted medical treatment, even if necessary for life itself.’ With regard to patients who are unable to make decisions for themselves, both Europe and the United States are converging toward a view that respects a role for surrogates in decision-making while recognizing the need to limit their authority. Beyond decisions to withdraw and withhold treatments, both the United States and Europe are experimenting with active hastening of the dying process through euthanasia and physician-assisted suicide. In the author’s opinion, the next big question to be addressed in end-of-life decision-making is ‘Just how bad does the neurological condition and prognosis need to be before it is acceptable to allow a decision to withdraw life support’? Although the practices described here have wide acceptance throughout the United States and Europe, the worldwide emergence of religious fundamentalism and the associated vitalistic view about the sanctity of life may result in significant changes over the next few decades.

Keywords

ETHICSORGAN DONATIONPROFESSIONAL–FAMILY RELATIONSPERSISTENT VEGETATIVE STATEDECISION-MAKING
Type
Original Article
Information
European Journal of Anaesthesiology , Volume 25 , Issue S42 , February 2008 , pp. 43 - 50
Copyright
Copyright © European Society of Anaesthesiology 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1.Mollaret, P, Goulon, M. Le coma depasse. Rev Neurol 1959; 101: 3–15.Google Scholar
2.Barnard, CN. Reflections on the first heart transplant. S Afr Med J 1987; 72: 19.Google ScholarPubMed
3.Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. JAMA 1968; 205: 337–340.CrossRefGoogle Scholar
4.Plum, F. Clinical standards and technological confirmatory tests in diagnosing brain death. In: Youngner, SJ, Arnold, RM, Schapiro, R, eds. The Definition of Death: Contemporary Controversies. Baltimore, USA: The Johns Hopkins University Press, 1999: 34–65.Google Scholar
5.Truog, RD. Is it time to abandon brain death? Hastings Cent Rep 1997; 27: 29–37.CrossRefGoogle ScholarPubMed
6.Truog, RD, Robinson, WM. Role of brain death and the dead-donor rule in the ethics of organ transplantation. Crit Care Med 2003; 31: 2391–2396.CrossRefGoogle ScholarPubMed
7.Truog, RD. Organ donation without brain death? Hastings Cent Rep 2005; 35: 3.CrossRefGoogle ScholarPubMed
8.Wijdicks, EFM. Brain death worldwide – accepted fact but no global consensus in diagnostic criteria. Neurology 2002; 58: 20–25.CrossRefGoogle ScholarPubMed
9.Wijdicks, EFM. The diagnosis of brain death. N Engl J Med 2001; 344: 1215–1221.CrossRefGoogle ScholarPubMed
10.McIntyre, RL. The significance of the legacy of Karen Ann Quinlan. Trends Health Care Law and Ethics 1993; 8: 7–16.Google Scholar
11.Truog, RD, Levine, DZ, Hutchinson, T et al. . Discontinuing immunosuppression in a child with a renal transplant: are there limits to withdrawing life support? (Discussion). Am J Kidney Dis 2001; 38: 901–915.Google Scholar
12.Prendergast, TJ, Claessens, MT, Luce, JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998; 158: 1163–1167.CrossRefGoogle ScholarPubMed
13.Burns, JP, Mitchell, C, Outwater, KM et al. . End-of-life care in the pediatric intensive cave unit after the forgoing of life-sustaining treatment. Crit Care Med 2000; 28: 3060–3066.CrossRefGoogle Scholar
14.Brock, DW. Death and dying. In: Veatch, RM, ed. Medical Ethics. Boston, USA: Jones and Bartlett Publishers, 1989: 329–356.Google Scholar
15.Layon, AJ, D’Amico, R, Caton, D, Mollet, CJ. And the patient chose: medical ethics and the case of the Jehovah’s Witness. Anesthesiology 1990; 73: 1258–1262.Google Scholar
16. Le Conseil d’État statuant au contentieux, sur le rapport de la 5èmesous-section N° 198546, Séance du 12 octobre 2001, lecture du 26 octobre 2001 Mme X. http://www.conseil-etat.fr/ce/actual/index_ac_lc0115.shtml. 1-15-2007.Google Scholar
17.Emanuel, LL, Emanuel, EJ. The Medical Directive: a new comprehensive advance care document. JAMA 1989; 261: 3288–3293.Google Scholar
18.Goodman, MD, Tarnoff, M, Slotman, GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med 1998; 26: 701–704.CrossRefGoogle ScholarPubMed
19.Pochard, F, Azoulay, E, Chevret, S et al. . Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med 2001; 29: 1893–1897.Google Scholar
20.Lemaire, F. The European Directive 2001/20 for clinical research: friend or foe? Intensive Care Med 2006; 32: 1689–1690.CrossRefGoogle ScholarPubMed
21.Emanuel, EJ, Emanuel, LL. Four models of the physician–patient relationship. JAMA 1992; 267: 2221–2226.CrossRefGoogle ScholarPubMed
22.Paris, JJ, Cassem, EH, Dec, W, Reardon, FE. Use of a DNR order over family objections: The case of Gilgunn v. MGH. J Intensive Care Med 1999; 14: 41–45.Google Scholar
23.Capron, AM. Abandoning a waning life. Hastings Cent Rep 1995; 25: 24–26.CrossRefGoogle ScholarPubMed
24.Flamm, AL. The Texas “futility” procedure: no such thing as a fairy-tale ending. Med Ethics 2004; 11: 4.Google Scholar
25.Fine, RL, Mayo, TW. Resolution of futility by due process: early experience with the Texas advance directives. Ann Intern Med 2003; 138: 743–746.CrossRefGoogle ScholarPubMed
26.Annas, GL, Arnold, B, Aroskar, M et al. . Bioethicists’ statement on the US Supreme Court’s Cruzan decision. N Engl J Med 1990; 323: 686–687.CrossRefGoogle ScholarPubMed
27.Annas, GJ. Nancy Cruzan and the right to die. N Engl J Med 1990; 323: 670–673.CrossRefGoogle ScholarPubMed
28.Casarett, D, Kapo, J, Caplan, A. Appropriate use of artificial nutrition and hydration fundamental principles and recommendations. N Engl J Med 2005; 353: 2607–2612.CrossRefGoogle ScholarPubMed
29.Sulmasy, DP. Terri Schiavo and the Roman Catholic tradition of forgoing extraordinary means of care. J Law Med Ethics 2005; 33: 359–362.Google Scholar
30.Ahronheim, JC, Gasner, MR. The sloganism of starvation. Lancet 1990; 335: 278–279.CrossRefGoogle ScholarPubMed
31.Billings, JA. Comfort measures for the terminally ill. Is dehydration painful? J Am Geriatr Soc 1985; 33: 808–810.CrossRefGoogle ScholarPubMed
32.Ganzini, L, Goy, ER, Miller, LL, Harvath, TA, Jackson, A, Delorit, MA. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med 2003; 349: 359–365.Google Scholar
33.Eddy, DM. A conversation with my mother. JAMA 1994; 272: 179–181.CrossRefGoogle ScholarPubMed
34.McCue, JD. The naturalness of dying. JAMA 1995; 273: 1039–1043.CrossRefGoogle ScholarPubMed
35.Mitchell, SL, Buchanan, JL, Littlehale, S, Hamel, MB. Tube-feeding versus hand-feeding nursing home residents with advanced dementia: a cost comparison. J Am Med Dir Assoc 2003; 4: 27–33.CrossRefGoogle ScholarPubMed
36.Mitchell, SL. Financial incentives for placing feeding tubes in nursing home residents with advanced dementia. J Am Geriatr Soc 2003; 51: 129–131.CrossRefGoogle ScholarPubMed
37.Truog, RD, Cochrane, TI. Refusal of hydration and nutrition: Irrelevance of the “artificial” versus “natural” distinction. Arch Intern Med 2005; 165: 2574–2576.CrossRefGoogle Scholar
38.Brock, D. Voluntary active euthanasia. Hastings Cent Rep 1992; 22: 10–22.CrossRefGoogle ScholarPubMed
39.Van der Maas, PJ, Van der Wal, G, Haverkate, I et al. . Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995. N Engl J Med 1996; 335: 1699–1705.CrossRefGoogle ScholarPubMed
40.Van der Wal, G, Van der Maas, PJ, Bosma, JM et al. . Evaluation of the notification procedure for physician-assisted death in the Netherlands. N Engl J Med 1996; 335: 1706–1711.Google Scholar
41.Hedberg, K, Hopkins, D, Kohn, M. Five years of legal physician-assisted suicide in Oregon. N Engl J Med 2003; 348: 961–964.CrossRefGoogle ScholarPubMed
42.Ganzini, L, Harvath, TA, Jackson, A, Goy, ER, Miller, LL, Delorit, MA. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med 2002; 347: 582–588.CrossRefGoogle ScholarPubMed
43.Wade, DT. Ethical issues in diagnosis and management of patients in the permanent vegetative state. BMJ 2001; 322: 352–354.CrossRefGoogle ScholarPubMed
44.Lo, B, Dornbrand, L, Wolf, LE, Groman, M. The Wendland case – withdrawing life support from incompetent patients who are not terminally ill. N Engl J Med 2002; 346: 1489–1493.CrossRefGoogle Scholar
45.Beaumont, JG, Kenealy, PM. Incidence and prevalence of the vegetative and minimally conscious states. Neuropsychol Rehabil 2005; 15: 184–189.CrossRefGoogle ScholarPubMed
46.Owen, AM, Coleman, MR, Boly, M, Davis, MH, Laureys, S, Pickard, JD. Detecting awareness in the vegetative state. Science 2006; 313: 1402.CrossRefGoogle ScholarPubMed
47.Annas, GJ. “Culture of life” politics at the bedside – the case of Terri Schiavo. N Engl J Med 2005; 352: 1710–1715.CrossRefGoogle ScholarPubMed