Recommended Literature
Appendix
Downloadable Documents and Worksheets
Recommended Literature
Brody H, Campbell ML, Faber-Langendoen K, Ogle KS. Withdrawing intensive life-sustaining treatment—recommendations for compassionate clinical management. N Engl J Med. 1997;336:652-657.
Council on Ethical and Judicial Affairs. Decisions to forgo life-sustaining treatment for incompetent patients. In: Council on Ethical and Judicial Affairs Reports on End-of-Life Care. Chicago, IL: American Medical Association; 1998:30-40.
Council on Ethical and Judicial Affairs. Do-not-resuscitate orders. In: Council on Ethical and Judicial Affairs Reports on End-of-Life Care. Chicago, IL: American Medical Association; 1998:1.
Decisions near the end of life. Council on Ethical and Judicial Affairs, American Medical Association. JAMA. 1992;267:2229-2233.
Drane JF. Caring to the End: Policy Suggestions and Ethics Education for Hospice and Home Health Care Agencies. Erie, PA: Lake Area Health Education Center; 1997.
Gianakos D. Terminal weaning. Chest. 1995;108:1405-1406.
Gilligan T, Raffin TA. Rapid withdrawal of support. Chest. 1995;108:1407-1408.
Guidelines for the appropriate use of do-not-resuscitate orders. Council on Ethical and Judicial Affairs, American Medical Association. JAMA. 1991;265:1868-1871.
Miles S. Rapid extubation protocol. Available at: http://wings.buffalo.edu/faculty/research/bioethics/miles.html. Accessed December 23, 1998.
Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA. 1995;274:478-482.
Orentlicher D. The Ethical Question: Death and Dying [videotape/study guide]. Chicago, IL: American Medical Association; 1996. The Ethical Question Video/Study Guide Series.
Pearlman R, Starks H, Cain K, Cole W, Rosengren D, Patrick D. Your Life, Your Choices, Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Seattle, WA: Patient Decision Support; 1992.
Roy DJ, MacDonald N. Ethical issues in palliative care. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford, England: Oxford University Press; 1998:112-121.
The Hospice Institute of the Florida Suncoast. Care at the Time of Death. Hospice Training Program. Largo, FL: The Hospice Institute of the Florida Suncoast; 1996.
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;274:1591-1598.
Weissman DE. Management of terminal dyspnea. Available at: http://www.grand-rounds.com/mayjune98/5no3terminal dyspnea.html. Accessed December 23, 1998.
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Appendix
Cases for Role Play
Artificial Feeding and Hydration
DW is an 82-year-old widowed retired secretary with advanced dementia. She is cared for in the home of her married daughter, who is her power-of-attorney for health affairs. She requires assistance in all her domestic activities (bathing, feeding, toileting, ambulation, etc) She spends most of the day in bed, or lying on the sofa. She speaks very little, and not very intelligibly. She has recently stopped eating almost everything. She bites the spoon when it is brought to her mouth and/or pockets food in her cheeks without swallowing. She was admitted to the hospital several months ago for the treatment of aspiration pneumonia. The possibility of a feeding tube has been raised. You are discussing this with the daughter.
Resuscitation
KE is a 68-year-old truck driver with advanced esophageal cancer. Despite surgical resection and combination chemotherapy and radiotherapy, the disease has progressed. Although he denies pain or breathlessness, he does indicate overall fatigue. He has lost 10 pounds over the past month. Recent studies have demonstrated malignant pleural effusion and liver metastases. He knows these results. You are seeing him in the office to discuss further care.
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Information for Patients/Families
Artificial Fluids and Nutrition
When is artificial feeding and nutrition most appropriate?
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If you have a temporary condition that prevents swallowing, artificial fluids and nutrition can be provided until you recover
What is involved in the procedure?
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An intravenous catheter may be placed in a vein in the skin for fluids, or sometimes nutrition
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Alternately, a plastic tube called a nasogastric tube (NG tube) may be placed through the nose, down the throat, and into the stomach. It is approximately 1/8 inch in diameter. This can only be left temporarily
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If feeding by this route, a more permanent feeding tube may be placed into the wall of the stomach (PEG tube or G tube)
What happens if it is not administered?
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If a person is unable to take any food or fluids due to illness, he or she will eventually fall into a state much like a deep sleep. This process will take 1 to 3 weeks
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Before entering the deep sleep, he or she will normally not experience any hunger or thirst after the first several days
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For a person who has an advanced illness, giving artificial hydration and nutrition may not prolong life
What are the benefits?
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A feeding tube may reduce hunger in someone who is hungry, but cannot swallow
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Intravenous fluids may reduce some symptoms, such as delirium
What are the burdens?
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All feeding tubes are associated with significant risk. Around 30% of patients have signs of the liquid entering the lungs. This aspiration of fluid can cause coughing and pneumonia
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feeding tubes may feel uncomfortable. They can block the stomach, causing pain, nausea, and vomiting
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Tubes for food and fluids may become infected
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Physical restraints are occasionally needed so the patient won’t remove the tube
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Artificial Ventilation
When is artificial ventilation best used?
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If you have a temporary condition that prevents adequate breathing, a breathing machine can be used until you recover
What is involved in the procedure?
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A tube is placed through the mouth or nose into the lung and is connected to a breathing machine
What happens if it is not administered?
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If a patient is unable to breathe, the patient may die
What are the benefits?
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The breathing machine allows the body time to recover
What are the burdens?
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The breathing tube is uncomfortable. Most patients require medicine to keep them comfortable while they are on the breathing machine
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It may prolong a state of dependence in a medical setting that the patient finds not worth the discomfort
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Cardiopulmonary Resuscitation (CPR)
When is CPR most important?
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When the heart or lungs stop working unexpectedly (eg, after an accident or when you are walking down the street)
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When there is a possibility that the underlying problem can be fixed
What is involved in the procedure?
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Involves vigorous pressing on the chest and electric stimulation to the chest
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Medications may be administered and a tube to assist breathing may be used
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Typically lasts for 15 to 30 minutes
What happens if it is not administered?
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The loss of consciousness will be followed by death in 5 to 10 minutes
What are the benefits?
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For a patient with an advanced life-threatening illness who is dying of the underlying disease, there is no benefit
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For patients with good overall health status, younger age, and administered within 5 minutes of cardiac or respiratory arrest, it may permit prolonged life
What are the burdens?
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Chest compressions could result in a sore chest, broken ribs, or a collapsed lung
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Most people who need CPR also need to be on mechanical ventilator in an intensive care unit to support their breathing for a period of time
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Fewer than 10% of all hospitalized patients survive CPR and return to their previous state (most of these people were already in a coronary care unit when the procedure was done). Most patients live for a short period after CPR, but still die in the hospital
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Only 1% to 4% of patients with multiple chronic illnesses survive to leave the hospital
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Almost no one with cancer survives to leave the hospital
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Of those who survive, many continue to live in a weaker state, or with brain damage. Half the people who survive are chronically dependent
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Downloadable Documents and Worksheets
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