Lesson 6: Death and Dying

Understand the terms advance directives, health care proxy, living will, durable power of attorney for health care.
Understand the role of surrogates in end-of-life decision-making.
Understand the terms physician-assisted suicide, active and passive euthanasia; withholding and/or terminating life-sustaining treatment including nutrition and hydration and differences between them.

Required Reading

Introduction to Clinical Ethics. Fletcher, Miller, Lombardo and Marshall. Second Edition.
"Death and Dying," p. 127-153
The Supreme Court Speaks. New Eng J Med. October 23, 1997: Vol 337(17); p. 1234-1239.
Ethics Manual, Fourth Edition, American College of Physicians.
Code of Ethics, American Medical Association, p. 39-59.
"Euthanasia," 2.21
"Physician-Assisted Suicide," 2.211
"Treatment Decisions for Seriously Ill Newborns," 2.215
"Do Not Resuscitate Orders," 2.22
Note: Many of these AMA statements are in Doctor's Dilemma
Pellegrino ED. Emerging Ethical Issues in Palliative Care. JAMA, May 20, 1998; Vol. 279(19): 1521.

Discussion Questions

Relate how any experience with the death of someone you've known has revealed to you the impact that death and dying can have on you, and on others who have known the deceased.
What is the likely impact that having no experience with death and dying prior to medical school will have on a medical student?
Explore, as time allows, study questions 3-7 on page 135 of Fletcher's text.

Clinical Vignettes

A video presentation will be given to the entire class on October 4, 1999 at 8:00 a.m. in CJ-1103. The class will be released into respective workshops following the video presentation.

Advance Directives

The term "advance directive" refers to legal means by which individuals can express and, within certain limits, enforce their wishes regarding health care in the event that they become unconscious or otherwise mentally incapacitated. Common examples of such include living wills (which direct families and physicians to withhold or withdraw life sustaining treatment if the testator is terminally ill and permanently unconscious) and durable powers of attorney (which appoint and invest third parties with full authority to make decisions for incapacitated patients). When properly executed, these documents provide those who, in good faith, follow their provisions, with protection from prosecution and civil suit.

Living Will: This advance directive allows a competent adult to direct his or her physician to withhold or withdraw life-sustaining procedures in the event of a terminal condition when the patient is no longer able to participate in decision-making.

A "Durable Power of Attorney for Health Care" is a written document whereby the patient (the "principle") appoints a third party (the "agent") to direct the course of the patient=s personal and medical care if the patient is unable to make these decisions for himself or herself; for example, if he or she is unconscious. The law requires the agent to try to make the health care decisions that the principle would make if able. The agent has priority over all other surrogate decision-makers.

Points to Remember about Advance Directives

In critical care settings, advance directives can provide direction for physicians regarding a patient's treatment choices. Keep in mind:

Whenever possible, review advance directives with a patient before the person is admitted to an intensive care unit (ICU). In less stressful settings, the patient has time to think clearly, ask questions, and consult with others.
When a patient who has decisional capacity enters an ICU with an advance directive, review the contents of the directive carefully with the person and, if at all possible, with the surrogate named and family members.
If a patient does not have an advance directive but still has the capacity to make health care decisions, determine the patient's wishes and assist the person in executing directives if he or she so chooses.
If a patient is admitted to an ICU without decisional capacity but with an advance directive or if an advance directive is in effect for a patient, carefully follow the instructions specified in the directive and/or the decisions of the agent appointed to ensure that the patient's wishes about care are implemented.
If a patient lacks decisional capacity and has not provided formal advance directives, learn as much as possible about the patient's wishes so that they may be followed.
You are not obligated to follow a patient's directive in the presence of a moral or professional conflict. However, so that the patient is not abandoned, assist him or her in obtaining the services of another physician.
If in doubt about a particular case, seek ethical and/or legal guidance.

Life-Sustaining Procedures

The AMA defines life-sustaining treatment as follows: "Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment may include, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration." [From the AMA's Withholding or Withdrawing Life-Sustaining Medical Treatment.]

The Ethics Manual of the American College of Physicians presents its position on this matter in a section on "Dilemmas Regarding Life-Sustaining Treatments," particularly in subsections on "terminally ill patients" and "intravenous fluids and artificial feedings."

Surrogate Decision–Makers

The law recognizes the natural rights and concern of family members (and the concerns of others in some states) for the best interest of the patients and authorizes them to provide consent for medical treatment on their behalf when they are unable to consent for themselves. These surrogate decision-makers are empowered in order of how closely they are related to the patients. The purpose of all this is to preserve the patient's autonomy by providing for substituted judgement via those who understand his or her intentions and wishes regarding medical treatment.

Function of the Surrogate Decision-Maker

Code of Medical Ethics, American Medical Association

If the patient receiving life-sustaining treatment is incompetent, a surrogate decision-maker should be identified...physicians should provide all relevant medical information and explain to surrogate decision-makers that decisions regarding withholding or withdrawing life-sustaining treatment should be based on substituted judgement (what the patient would have decided) when there is evidence of the patient's preferences and values. In making a substituted judgement, decision-makers may consider the patient's advance directive (if any), the patient's values about life and the way it should be lived, and the patient's attitudes toward sickness, suffering, medical procedures, and death. If there is no adequate evidence of the incompetent patient's preferences and values, the decision should be based on the best interests of the patient (what outcome would most likely promote the patient's well-being).

The American College of Physicians' Ethics Manual has a rather comprehensive section on "decisions near the end of life." Of particular interest are the subsections on "who should make the decision" and "criteria for decisions."

2.20 Withholding or Withdrawing Life-Sustaining Treatment

Code of Medical Ethics, American Medical Association

The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail. The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity...There is not an ethical distinction between withdrawing and withholding life-sustaining treatment.

A competent, adult patient may, in advance, formulate and provide a valid consent to the withholding or withdrawal of life-support systems in the event that injury or illness renders that individual incompetent to make such a decision.

If the patient receiving life-sustaining treatment is incompetent, a surrogate decision-maker should be identified. Without an advanced directive that designates a proxy, the patient's family should become the surrogate decision-maker. Family includes person with whom the patient is closely associated. In the case when there is no person closely associated with the patient, but there are persons who both care about the patient and have sufficient relevant knowledge of the patient, such persons may be appropriate surrogates. Physicians should provide relevant medical information and explain to the surrogate decision-makers that decisions regarding the withholding or withdrawing life-sustaining treatment should be based on substituted judgement (what the patient would have decided) when there is evidence of the patient's preferences and values. In making a substituted judgement, decision-makers may consider the patient=s advance directive (if any); that patient's values about life and the way it should be lived; and the patient's attitude toward sickness, suffering, medical procedures, and death. If there is no adequate evidence of the incompetent patient's preferences and values, the decision should be based on the best interests of the patient (what outcome would most likely promote the patient's well-being).

Though the surrogate's decision for the incompetent patient should almost always be accepted by the physician, there are four situations that may require either institutional or judicial review and/or intervention in the decision-making process:

There is no available family member willing to be the patient's surrogate decision-maker
There is a dispute among family members and there is no decision-maker designated in an advance directive
A health care provider believes that the family's decision is clearly not what the patient would have decided if competent
A health care provider believes that the decision is not a decision that would reasonably be judged to be in the patient's best interests.

When there are disputes among family members or between family and health care providers, the use of ethics committees specifically designed to facilitate sound decision-making is recommended before resorting to the courts.

When a permanently unconscious patient had not left any evidence of previous preferences or values, since there is no objective way to ascertain the best interests of the patient, the surrogate's decision should not be challenged as long as the decision is based on the decision-maker's true concern for what would be best for the patient.

Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. This includes providing effective palliative treatment even though it may foreseeably hasten death.

Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgement or best interests analysis. (Principles I, III, IV and V) Updated June 1994.

Who Should Make the Decision?

Patients who have decision-making capacity and who are adequately informed of their clinical situation and options have the right to refuse any recommended medical treatment, including life-sustaining treatment, except in rare circumstances when the law forces a patient to accept treatment. The patient's right is based on the philosophical concept of autonomy, the common law right of self-determination, and the patient's liberty interest under the Constitution in refusing unwanted medical care. The crux of the issue is that the patient's (rather than the physician's) assessment of the benefits and burdens of treatment should determine what treatment is administered or withheld.

Criteria for Decisions

Ethics Manual, American College of Physicians

In order of priority, decisions should be based on advance directives, substituted judgements, and the best interests of the patient.

Patients' informed goals and choices should be respected even if they no longer have decision-making capacity. Through advance directives, competent patients state what treatments they would accept or decline if they lost decision making capacity. In giving advance directives, patients should also indicate their general goals for care and their choice of surrogate.

Oral statement to family members, friends, and health care professionals are the most common form of advance directive. However, oral statements are problematic if they are vague and ambiguous or if they were casual comments rather than seriously intended directives. Because some states regard oral advance directives as untrustworthy, written advance directives have several advantages. Living wills can have a narrow scope of application, in most states providing guidance only for terminal conditions, the definition of which varies; they may not apply to patients in a persistent vegetative state. Living wills generally are limited to the refusal of interventions that would only prolong the process of dying. Some states explicitly exclude intravenous fluids and tube feedings from the interventions that may be refused, although courts might rule that such an exclusion violates patient rights.

The durable power of attorney for health care can be more comprehensive and flexible than the living will; the patient appoints a surrogate (also called an agent) to make decisions if the patient becomes unable to do so. The surrogate is required to act in accordance with the patient's previously expressed preferences or best interests. Patients can usually indicate specific treatments they would accept or refuse in various situations. Different states have specific procedures for appointing surrogates. Some have durable power of attorney for health care or health care proxy laws for the appointment of surrogates, whereas others allow appointments as part of living wills. Physicians need to be familiar with state laws. Copies of written advance directives should be placed in the patient=s medical record.

Physicians should raise the issue of advance directives routinely with competent adult patients in outpatient visits and encourage them to provide advance directives and to discuss their preferences with their surrogate and family members. In addition, the Patient Self-Determination Act of 1990 requires hospitals, nursing homes, health maintenance organizations, and hospices that participate in Medicare and Medicaid programs to provide patients, on admission or enrollment, with information about their right to provide advance directives. These health care institutions are required to respect advance directives to the fullest extent permitted under state law. Discussions between physicians and patients let the physician know the patient's preferences and values, enable physicians to check that choices are informed and up-to-date, and reassure patients that the physician is willing to discuss these sensitive issues and will respect their choices. Discussions about patient preferences should be documented in the medical record.

Two standards have been developed for surrogate decision making in cases where the patient has not left an advance directive. In a substituted judgement, the surrogate attempts to make the judgement that the patient, if competent, would have made. This approach is feasible and desirable when the surrogate knows the patient=s goals, values, and choices.

If the patient=s values and preferences are unknown or unclear, decisions should be based on the patient's best interests. In making decisions about their care, patients often take into account their current and projected quality of life. For patients who lack decision making capacity, quality of life may also be an integral aspect of their best interests. Assessments of quality of life according to the patient's perspective and values should be respected. Quality-of-life judgements made by a person not familiar with the patient's perspective should be suspect. Because family members and health care workers may project their own values onto the incapacitated patient, there is a significant risk of bias and discrimination. In the current medical environment, which emphasizes cost containment, physicians should not use quality-of-life standards that may lead to various groups of patients being denied appropriate treatments.

Suggested Readings/References
Note: These articles can be found through Ovid and will require an ID and password.

Wanzer SH, et. al. The physician=s responsibility toward hopelessly ill patients. N Engl J Med 1984; 310: 955-9.
Wanzer SH, et. al. The physician=s responsibility toward hopelessly ill patients: A second look. N Engl J Med 1989 Oct 5;321(14):975-8.
Cassell EJ. The nature of suffering and the goals of medicine. N Engl J Med 306(11):639-45, 1982 Mar 18.
The Doctor's Dilemma
"Miller Case"
Loewy EH. Editorial: Ethical considerations in executing and implementing advance directives. Arch Intern Med, February 23, 1998; Vol 158: 321-24.
Code of Georgia, Title 31: Health. Chapter 36: Durable Power of Attorney for Health Care.


Copyright © 2000 Medical College of Georgia All rights reserved.	Medical College of Georgia Please email comments, suggestions or questions to Alan Roberts, aroberts@mail.mcg.edu. August 05, 2002