Position Papers
7 March 2000

Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids

Publication: Annals of Internal Medicine
Volume 132, Number 5

Abstract

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.

Get full access to this article

View all available purchase options and get full access to this article.

References

1.
Caring for the Dying: Identification and Promotion of Physician Competence. American Board of Internal Medicine End-of-Life Patient Care Project Committee. Philadelphia: American Board of Internal Medicine; 1996.
2.
Council on Ethical and Judicial Affairs, American Medical Association. Decisions near the end of life. JAMA. 1992;267:2229-33.
3.
Council on Scientific Affairs, American Medical Association. Good care of the dying patient. JAMA. 1996;275:474-8.
4.
Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Committee on Care at the End of Life, Division of Health Care Services, Institute of Medicine. Washington, DC: National Academy Pr; 1997.
5.
Quill TEMeier DMBlock SDBillings JA. The debate over physician-assisted suicide: empirical data and convergent views. Ann Intern Med. 1998;128:552-8.
6.
Seale CF. What happens in hospices: a review of research evidence. Soc Sci Med. 1989;28:551-9.
7.
Wallston KABurger CSmith RABaugher RJ. Comparing the quality of death for hospice and non-hospice cancer patients. Med Care. 1998;26:177-82.
8.
Byock I. Dying Well: Prospects for Growth at the End of Life. New York: Riverhead Books; 1997.
9.
Foley KM. Pain, physician-assisted suicide and euthanasia. Pain Forum. 1995;4:163-78.
10.
Jadad ARBrowman GP. The WHO analgesic ladder for cancer pain management. Stepping up the quality of its evaluation. JAMA. 1995;274:1870-3.
11.
American Pain Society Quality of Care Committee. Quality improvement guidelines for the treatment of acute pain and cancer pain. JAMA. 1995;274:1874-80.
12.
Rhymes J. Hospice care in America. JAMA. 1990;264:369-72.
13.
Kasting GA. The nonnecessity of euthanasia. In: Humber JM, Almeder RF, Kasting GA, eds. Physician-Assisted Death. Totawa, NJ: Humana; 1994:25-43.
14.
Ventafridda VRipamonti CDe Conno FTamburini MCassileth BR. Symptom prevalence and control during cancer patients' last days of life. J Palliat Care. 1990;6:7-11.
15.
Coyle NAdelhardt JFoley KMPortenoy RK. Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. J Pain Symptom Manage. 1990;5:83-93.
16.
Ingham JMPortenoy RK. Symptom assessment. Hematol Oncol Clin North Am. 1996;10:21-39.
17.
Quill TEBrody RV. ‘You promised me I wouldn't die like this!’ A bad death as a medical emergency. Arch Intern Med. 1995;155:1250-4.
18.
Back ALWallace JIStarks HEPearlman RA. Physician-assisted suicide and euthanasia in Washington State. Patient requests and physician responses. JAMA. 1996;275:919-25.
19.
van der Maas PJvan Delden JJPijnenborg L. Euthanasia and other medical decisions concerning the end of life. v 2. Amsterdam: Elsevier; 1992.
20.
Meier DEEmmons CAWallenstein SQuill TMorrison RSCassel CK. A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med. 1998;338:1193-201.
21.
van der Maas PJvan der Wal GHaverkate Ide Graaff CLKester JGOnwuteaka-Philipsen BDet al . Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med. 1996;335:1699-705.
22.
Cassel EJ. The nature of suffering and the goals of medicine. N Engl J Med. 1982;306:639-45.
23.
Frankel VE. The Doctor and the Soul, from Psychotherapy to Logotherapy. New York: Knopf; 1955.
24.
Block S. Assessing and managing depression in the terminally ill patient. Ann Intern Med. 2000;132:209-18.
25.
Chochinov HMWilson KGEnns MLander S. Prevalence of depression in the terminally ill: effects of diagnostic criteria and symptom threshold judgments. Am J Psychiatry. 1994;151:537-40.
26.
Brietbart WRosenfeld BDPassik SD. Interest in physician-assisted suicide among ambulatory HIV-infected patients. Am J Psychiatry. 1996;153:238-42.
27.
Kathol RGNoyes RWilliams JMutgi ACarroll BPerry P. Diagnosing depression in patients with medical illness. Psychosomatics. 1990;31:434-40.
28.
Byock IR. The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med. 1996;12:237-52.
29.
Byock IR. When suffering persists. J Palliat Care. 1994;10:8-13.
30.
Quill TE. A Midwife through the Dying Process: Stories of Healing and Hard Choices at the End of Life. Baltimore: Johns Hopkins Univ Pr; 1996.
31.
Quill TELo BBrock DW. Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA. 1997;278:2099-104.
32.
Troug RDBerde CBMitchell CGrier HE. Barbiturates in the care of the terminally ill. N Engl J Med. 1992;327:1678-82.
33.
Cherny NIPortenoy RK. Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. J Palliat Care. 1994;10:31-8.
34.
Enck RE. The Medical Care of Terminally Ill Patients. Baltimore: Johns Hopkins Univ Pr; 1994.
35.
Saunders CM, Sykes N, eds. The Management of Terminal Malignant Disease. 3d ed. London: Edward Arnold; 1993:1-305.
36.
Stone PPhillips CSpruyt OWaight C. A comparison of the use of sedatives in a hospital support team and in a hospice. Palliat Med. 1997;11:140-4.
37.
Quill TEDresser RBrock DW. The rule of double effect—a critique of its role in end-of-life decision making. N Engl J Med. 1997;337:1768-71.
38.
Brody H. Causing, intending, and assisting death. J Clin Ethics. 1993;4:112-7.
39.
Byock IR. Consciously walking the fine line: thoughts on a hospice response to assisted suicide and euthanasia. J Palliat Care. 1993;9:25-8.
40.
Quill TE. The ambiguity of clinical intentions. N Engl J Med. 1993;329:1039-40.
41.
Billings JABlock SD. Slow euthanasia. J Palliat Care. 1996;12:21-30.
42.
Mount B. Morphine drips, terminal sedation, and slow euthanasia: definitions and facts, not anecdotes. J Palliat Care. 1996;12:31-7.
43.
Brody H. Commentary on Billings and Block's “Slow Euthanasia.“. J Palliat Care. 1996;12:38-41.
44.
Brody HCampbell MLFaber-Langendoen KOgle KS. Withdrawing intensive life-sustaining treatment—recommendations for compassionate clinical management. N Engl J Med. 1997;336:652-7.
45.
Bernat JLGert BMogielnicki RP. Patient refusal of hydration and nutrition. An alternative to physician-assisted suicide or voluntary active euthanasia. Arch Intern Med. 1993;153:2723-8.
46.
Printz LA. Terminal dehydration, a compassionate treatment. Arch Intern Med. 1992;152:697-700.
47.
Eddy DM. A piece of my mind. A conversation with my mother. JAMA. 1994;272:179-81.
48.
Miller FGMeier DE. Voluntary death: a comparison of terminal dehydration and physician-assisted suicide. Ann Intern Med. 1998;128:559-62.
49.
McCann RMHall WJGroth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA. 1994;272:1263-6.
50.
Burt RA. The Supreme Court speaks—not assisted suicide but a constitutional right to palliative care. N Engl J Med. 1997;337:1234-6.
51.
Vacco v. Quill, 117 S.Ct. 2293 (1997).
52.
Washington v. Glucksberg, 117 S.Ct. 2258 (1997).
53.
Byock I. Patient refusal of nutrition and hydration: walking the ever-finer line. Am J Hosp Palliat Care. 1995;12:8-13.
54.
Lynn JCohn FPickering JHSmith JStoeppelwerth AM. American Geriatrics Society on physician-assisted suicide: brief to the United States Supreme Court. J Am Geriatr Soc. 1997;45:489-99.
55.
Brief Amicus Curiae for the National Hospice Organization in Vacco v. Quill and Washington v. Glucksberg, Supreme Court of the United States, October 1996.
56.
Quill TE. Doctor, I want to die. Will you help me? JAMA. 1993;270:870-3.
57.
Block SDBillings JA. Patient requests to hasten death. Evaluation and management in terminal care. Arch Intern Med. 1994;154:2039-47.
58.
Lo BQuill TTulsky J. Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. Ann Intern Med. 1999;130:744-9.
59.
Karlawish JHQuill TMeier DE. A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. Ann Intern Med. 1999;130:835-40.
60.
Doyle D, Hanks GW, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2d ed. New York: Oxford Univ Pr; 1998:945-7.
61.
Enck RE. The Medical Care of Terminally Ill Patients. Baltimore: Johns Hopkins Univ Pr; 1994:166-72.
62.
Dunlop RJ. Is terminal restlessness sometimes drug induced? Palliat Med. 1989;3:65-6.
63.
Greene WRDavis WH. Titrated intravenous barbiturates in the control of symptoms in patients with terminal cancer. South Med J. 1991;84:332-7.
64.
Moyle J. The use of propofol in palliative medicine. J Pain Symptom Manage. 1995;10:643-6.
65.
Quill TECassel CK. Nonabandonment: a central obligation for physicians. Ann Intern Med. 1995;122:368-74.

Comments

0 Comments
Sign In to Submit A Comment

Information & Authors

Information

Published In

cover image Annals of Internal Medicine
Annals of Internal Medicine
Volume 132Number 57 March 2000
Pages: 408 - 414

History

Published in issue: 7 March 2000
Published online: 15 August 2000

Keywords

Authors

Affiliations

for the ACP-ASIM End-of-Life Care Consensus Panel
This paper was written by Timothy E. Quill, MD, and Ira R. Byock, MD, for the American College of Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care Consensus Panel. Members of the ACP-ASIM End-of-Life Care Consensus Panel were Bernard Lo, MD (Chair); Janet Abrahm, MD; Susan Block, MD; William Breitbart, MD; Ira R. Byock, MD; Kathy Faber-Langendoen, MD; Lloyd W. Kitchens Jr., MD; Paul Lanken, MD; Joanne Lynn, MD; Diane Meier, MD; Timothy E. Quill, MD; George Thibault, MD; and James Tulsky, MD. Primary staff to the Panel were Lois Snyder, JD (Project Director), and Jason Karlawish, MD. This paper was reviewed and approved by the Ethics and Human Rights Committee, although it does not represent official ACP-ASIM policy. Members of the Ethics and Human Rights Committee were Risa Lavizzo-Mourey, MD (Chair); Joanne Lynn, MD; Richard J. Carroll, MD; David A. Fleming, MD; Steven H. Miles, MD; Gail J. Povar, MD; James A. Tulsky, MD; Alan L. Gordon, MD; S.Y. Tan, MD, JD; Vincent Herrin, MD; and Lee J. Dunn Jr., JD, LLM.
Grant Support: The Greenwall Foundation provided support to the End-of-Life Care panel.
Corresponding Author: Lois Snyder, JD, Center for Ethics and Professionalism, American College of Physicians-American Society of Internal Medicine, 190 N. Independence Mall West, Philadelphia, PA 19106; e-mail, [email protected].
Current Author Addresses: Dr. Quill: Department of Medicine, The Genesee Hospital, 224 Alexander Street, Rochester, NY 14607.
Dr. Byock: The Palliative Care Service, 341 University Avenue, Missoula, MT 59801.

Metrics & Citations

Metrics

Citations

If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. For an editable text file, please select Medlars format which will download as a .txt file. Simply select your manager software from the list below and click Download.

For more information or tips please see 'Downloading to a citation manager' in the Help menu.

Format





Download article citation data for:
Timothy E. Quill, Ira R. Byock, for the ACP-ASIM End-of-Life Care Consensus Panel. Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids. Ann Intern Med.2000;132:408-414. doi:10.7326/0003-4819-132-5-200003070-00012

View More

Login Options:
Purchase

You will be redirected to acponline.org to sign-in to Annals to complete your purchase.

Access to EPUBs and PDFs for FREE Annals content requires users to be registered and logged in. A subscription is not required. You can create a free account below or from the following link. You will be redirected to acponline.org to create an account that will provide access to Annals. If you are accessing the Free Annals content via your institution's access, registration is not required.

Create your Free Account

You will be redirected to acponline.org to create an account that will provide access to Annals.

View options

PDF/EPUB

View PDF/EPUB

Related in ACP Journals

Full Text

View Full Text

Figures

Tables

Media

Share

Share

Copy the content Link

Share on social media