The End of Life: Ethical Considerations

Defining death has become a complex matter. Innovative medical technology, while saving many lives, has also blurred the lines between life and death. The controversy about the definition of death is but one of the ethical issues, or principles of moral conduct, related to end-of-life care and decision making. For example, should a son or daughter request the withdrawal of nutrition and hydration from a parent in a persistent vegetative state, knowing that parent's respect for the sanctity of life? Does a physician honor a patient's do-not-resuscitate request when it goes against the physician's ethical convictions? Who should determine when medical care is futile and no longer benefits the dying patient?

The answers to questions about care at the end of life, as well as decisions made by people who are dying and by their loved ones, vary in response to cultural influences, family issues, and spiritual beliefs. Historical, social, cultural, political, and religious convictions shape ethical beliefs about death and guide the actions of health-care professionals and people who are terminally ill. For people of faith, religious convictions are vitally important when making end-of-life decisions.

RELIGIOUS TEACHINGS

All major religions consider life sacred. When it comes to death and dying, they take seriously the fate of the soul, be it eternal salvation (as in Christian belief) or reincarnation (as in Buddhist philosophy).

Roman Catholicism

According to Catholic teachings, death is contrary to God's plan for humankind. In the Old Testament story of Genesis, when God created human beings, he did not intend for them to die. However, when Adam and Eve (the first humans) disobeyed God in the Garden of Eden, physical death was the consequence of their sin. In the New Testament section of the Bible, Jesus was the Son of God who, out of love for humankind, was born into the world and died as a man. God raised Jesus from the dead after his crucifixion to live eternally with him in heaven, and Jesus promised humankind the same opportunity. The Catechism of the Catholic Church (2003) notes that according to Christian doctrine, Jesus “transformed the curse of death into a blessing.”

HISTORY. Early Christians believed God was the giver of life, and therefore he alone could take life away. They viewed euthanasia (hastening the death of a dying, suffering patient who requests death) as usurping that divine right. The early Christian philosopher St. Augustine of Hippo (354–430) taught that people must accept suffering because it comes from God. According to Augustine, suffering not only helps one grow spiritually but also prepares Christians for the eternal joy that God has in store for them. Moreover, the healthy were exhorted to minister to the sick not for the purpose of helping to permanently end their suffering, but to ease their pain.

St. Thomas Aquinas (1225?–1274), who is considered to be one of the greatest Catholic theologians, taught that ending one's suffering by ending one's life was sinful. To help another take his or her life was just as sinful. However, in 1516 Sir Thomas More (1478–1535), an English statesman, humanist, and loyal defender of the Catholic Church, published Utopia, which described an ideal country governed by reason. More argued that if a disease is not only incurable but also causes pain that is hard to control, it is permissible to free the sufferer from his or her painful existence. This was a major departure from the medieval acceptance of suffering and death as the earthly price to be paid for eternal life.

PRINCIPLE OF DOUBLE EFFECT. Catholic moral theologians were said to have developed the ethical principle “Rule of Double Effect.” According to this principle, “Effects that would be morally wrong if caused intentionally are permissible if foreseen but unintended.” For example, a physician prescribes an increased dosage of the painkiller morphine to ease a patient's pain, not to bring about his or her death. However, it is foreseen that a potent dosage may depress the patient's respiration and hasten death. The Catechism of the Catholic Church states that “the use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable.”

ON EUTHANASIA. Over the years, Catholic theologians have debated balancing the preservation of God-given life with the moral issue of continuing medical treatments that are of no apparent value to patients. In “The Prolongation of Life” (1957), Pope Pius XII (1876–1958) states that if a patient is hopelessly ill, physicians may discontinue heroic measures “to permit the patient, already virtually dead, to pass on in peace.” He adds that if the patient is unconscious, relatives may request withdrawal of life support under certain conditions.

The Committee for Pro-Life Activities of the National Conference of Catholic Bishops states in Nutrition and Hydration: Moral and Pastoral Reflections (April 1992, http://www.priestsforlife.org/magisterium/bishops/92-04nutritionandhydrationnccbprolifecommittee.htm) that “in the final stage of dying one is not obliged to prolong the life of a patient by every possible means: ‘When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.’”

The Eastern Orthodox Church

The Eastern Orthodox Church resulted from the division between eastern and western Christianity during the eleventh century. Differences in doctrines and politics, among other things, caused the separation. The Eastern Orthodox Church does not have a single worldwide leader such as the Roman Catholic pope. Instead, national jurisdictions called sees are each governed by a bishop.

Eastern Orthodoxy relies on the Scriptures, tradition, and the decrees of the first seven ecumenical councils to regulate its daily conduct. In matters of present-day morality, such as the debates on end-of-life issues, contemporary Orthodox ethicists explore possible courses of action that are in line with the “sense of the Church.” The sense of the church is deduced from church laws and dissertations of the church fathers, as well as from previous council decisions. Their recommendations are subject to further review.

In “The Stand of the Orthodox Church on Controversial Issues” (2005, http://www.goarch.org/en/ourfaith/articles/article7101.asp), the Reverend Stanley Harakas states, “The Orthodox Church has a very strong pro-life stand which in part expresses itself in opposition to doctrinaire advocacy of euthanasia.” However, Harakas notes that “as current Orthodox theology expresses it: ‘The Church distinguishes between euthanasia and the withholding of extraordinary means to prolong life. It affirms the sanctity of human life and man's God-given responsibility to preserve life. But it rejects an attitude which disregards the inevitability of physical death.’”

Protestantism

The different denominations of Protestantism have varying positions about euthanasia. Many hold that active euthanasia is morally wrong, but they also believe that prolonging life by extraordinary measures is not necessary. In other words, even though few would condone active euthanasia, many accept passive euthanasia. (Active euthanasia involves the hastening of death through the administration of lethal drugs. Passive euthanasia refers to withdrawing life support or medical interventions necessary to sustain life, such as removing a patient from a ventilator.) Among the Protestant denominations that support the latter view are the Jehovah's Witnesses, the Church of Jesus Christ of Latter-day Saints (Mormons), the Lutheran Church, the Reformed Presbyterians, the Presbyterian Church in America, the Christian Life Commission of the Southern Baptist Convention, and the General Association of the General Baptists.

Some denominations have no official policy on active or passive euthanasia. However, many individual ethicists and representatives within these churches agree with other denominations that active euthanasia is morally wrong but that futile life support serves no purpose. Among these churches are the Seventh-Day Adventists, the Episcopal Church, and the United Methodist Church.

Christian Scientists believe that prayer heals all diseases. They claim that illnesses are mental in origin and therefore cannot be cured by outside intervention, such as medical help. Some also believe that seeking medical help while praying diminishes or even cancels the effectiveness of the prayers. Because God can heal even those diseases others see as incurable, euthanasia has no practical significance among Christian Scientists.

The Unitarian Universalist Association, a union of the Unitarian and Universalist Churches, is perhaps the most liberal when it comes to the right to die. The association states in “The Right to Die with Dignity: 1988 General Resolution” (March 28, 2007, http://www.uua.org/socialjustice/socialjustice/statements/14486.shtml) that “human life has inherent dignity, which may be compromised when life is extended beyond the will or ability of a person to sustain that dignity.” Furthermore, “Unitarian Universalists advocate the right to self-determination in dying, and the release from civil or criminal penalties of those who, under proper safeguards, act to honor the right of terminally ill patients to select the time of their own deaths.”

Judaism

In the United States there are three main branches of Judaism. The Orthodox tradition adheres strictly to Jewish laws. Conservative Judaism advocates adapting Jewish precepts to a changing world, but all changes must be consistent with Jewish laws and tradition. Reform Judaism, while accepting the ethical laws as coming from God, generally considers the other laws of Judaism as “instructional but not binding.”

Like the Roman Catholics, Jews believe that life is precious because it is a gift from God. No one has the right to extinguish life, because one's life is not his or hers in the first place. Generally, rabbis from all branches of Judaism agree that active euthanasia is not morally justified. It is tantamount to murder, which is forbidden by the Torah. Moreover, Jewish teaching holds that men and women are stewards entrusted with the preservation of God's gift of life and therefore are obliged to hold on to that life as long as possible.

PROLONGING LIFE VERSUS HASTENING DEATH. Even though Jewish tradition maintains that a devout believer must do everything possible to prolong life, this admonition is subject to interpretation even among Orthodox Jews.

The Torah and the Talmud (the definitive rabbinical compilation of Jewish laws, lore, and commentary) provide the principles and laws that guide Jews. The Talmud provides continuity to Jewish culture by interpreting the Torah and adapting it to the constantly changing situations of Jewish people.

On the subject of prolonging life versus hastening death, when that life is clearly nearing death, the Talmud narrates a number of situations involving people who are considered “goses” (literally, the death rattle is in the patient's throat, or one whose death is imminent). Scholars often refer to the story of Rabbi Hanina ben Teradyon, who, during the second century, was condemned to be burned to death by the Romans. To prolong his agonizing death, the Romans wrapped him in some wet material. At first, the rabbi refused to hasten his own death; however, he later agreed to have the wet material removed, thus bringing about a quicker death.

Some Jews interpret this Talmudic narration to mean that in the final stage of a person's life, it is permissible to remove any hindrance to the dying process. In this modern age of medicine, this may mean implementing a patient's wish, such as a do-not-resuscitate directive or the withdrawal of artificial life support.

Islam

Islam was founded by the prophet Muhammad (570–632) in the seventh century. The Koran, which is composed of God's revelations to Muhammad, and the sunna, Muhammad's teachings and deeds, are the sources of Islamic beliefs and practice. Even though there are many sects and cultural diversities within the religion, all Muslims (followers of Islam) are bound by a total submission to the will of Allah (God). The basic doctrines of Allah's revelations were systematized into definitive rules and regulations that now comprise the sharia (the religious law that governs the life of Muslims).

Muslims look to the sharia for ethical guidance in all aspects of life, including medicine. Sickness and pain are part of life and must be accepted as Allah's will. They should be viewed as a means to atone for one's sins. By contrast, death is simply a passage to another existence in the afterlife. Those who die after leading a righteous life will merit the true life on Judgment Day. The Koran (chapter 2, verse 28) states, “How do you disbelieve in God seeing you were dead and He gave you life and then He shall cause you to die, then He shall give you life, then unto Him you shall be returned?”

Islam teaches that life is a gift from Allah; therefore, no one can end it except Allah. Muhammad said, “Whosoever takes poison and thus kills himself, his poison will be in his hand; he will be tasting it in Hell, always abiding therein, and being accommodated therein forever” (compiled in Sahih Bukhari ). While an ailing person does not have the right to choose death, even if he or she is suffering, Muslims heed the following admonition from the Islamic Code of Medical Ethics (1981): “[The] doctor is well advised to realize his limit and not transgress it. If it is scientifically certain that life cannot be restored, then it is futile to diligently [maintain] the vegetative state of the patient by heroic means…. It is the process of life that the doctor aims to maintain and not the process of dying. In any case, the doctor shall not take a positive measure to terminate the patient's life.”

Hinduism

The Eastern religious tradition of Hinduism is founded on the principle of reincarnation (the cycle of life, death, and physical rebirth). Hindus believe that death and dying are intricately interwoven with life and that the individual soul undergoes a series of physical life cycles before uniting with Brahman (God). Karma refers to the ethical consequences of a person's actions during a previous life, which determine the quality of his or her present life. A person can neither change nor escape his or her karma. By conforming to dharma (religious and moral law), an individual is able to fulfill obligations from the past life. Life is sacred because it offers one the chance to perform good acts toward the goal of ending the cycle of rebirths.

Therefore, a believer in Hinduism views pain and suffering as personal karma, and serious illness as a consequence of past misdeeds. Death is simply a passage to another rebirth, which brings one closer to Brahman. Artificial medical treatments to sustain life are not recommended, and medical intervention to end life is discouraged. Active euthanasia simply interrupts one's karma and the soul's evolution toward final liberation from reincarnation.

Buddhism

Buddhism, like Hinduism, is based on a cycle of reincarnation. To Buddhists, the goals of every life are emancipation from samsara (the compulsory cycle of rebirths) and attainment of nirvana (enlightenment or bliss). Like the Hindus, Buddhists believe that sickness, death, and karma are interrelated. Followers of Siddhartha Gautama (c. 563–483 B.C.), also called Buddha, the founder of Buddhism, claim that Buddha advised against taking too strict a position when it comes to issues such as the right to die.

Tenzin Gyatso (1935–), the fourteenth Dalai Lama, the spiritual leader of Tibetan Buddhism, has commented on the use of mechanical life support when the patient has no chance to recover. Sogyal Rinpoche explains in The Tibetan Book of Living and Dying (1992) that rather than advocating or condemning passive euthanasia, the Dalai Lama advises that each case be considered individually: “If there is no such chance for positive thoughts [Buddhists believe that a dying person's final thoughts determine the circumstances of his next life], and in addition a lot of money is being spent by relatives simply to keep someone alive, then there seems to be no point. But each case must be dealt with individually; it is very difficult to generalize.”

BIOETHICS AND MEDICAL PRACTICE

Since ancient times, medical practice has been concerned with ethical issues. However, only since the last half of the twentieth century have rapid advances in medicine given rise to so many ethical dilemmas. In matters of death and dying the debate continues on issues such as physicians' honoring a patient's do-not-resuscitate order, withholding food and fluids, and withdrawing artificial respiration.

There are four basic tenets of bioethics: autonomy, beneficence, nonmaleficence, and justice. Autonomy refers to self-rule and self-determination. Beneficence is action that is in the best interest of the patient. Nonmaleficence means to do no harm. Justice is the practice of treating patients in comparable circumstances the same way and refers to equitable distribution of resources, risks, and costs.

Even though bioethics is subject to change and reinterpretation, medical practice continues to rely on these principles to guide the actions of physicians and other health-care providers.

The Hippocratic Oath

The earliest written document to deal with medical ethics is generally attributed to Hippocrates (c. 460–c. 377 B.C.), who is considered the father of medicine. For more than two thousand years, the Hippocratic Oath has been adopted by Western physicians as a code of ethics, defining their conduct in the discharge of their duties. In part, the oath states: “I will follow that method of treatment, which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious [harmful] and mischievous. I will give no deadly medicine to anyone if asked, nor suggest any such counsel.”

Nonetheless, some scholars claim that the giving of “deadly medicine” does not refer to euthanasia. During the time of Hippocrates, helping a suffering person end his or her life was common practice. Therefore, the oath might have been more an admonition to the medical profession to avoid acting as an accomplice to murder, rather than to refrain from the practice of euthanasia.

Some physicians believe that literal interpretation of the oath is not necessary. It simply offers guidelines that allow for adaptation to twenty-first-century situations. In fact, in 1948 the World Medical Association modified the Hippocratic Oath to call attention to the atrocities committed by Nazi physicians. Known as the Declaration of Geneva (October 14, 2006, http://www.wma.net/e/policy/c8.htm), the document reads in part: “I will practise my profession with conscience and dignity. The health of my patient will be my first consideration…. I will not permit considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing or any other factor to intervene between my duty and my patient. I will maintain the utmost respect for human life. I will not use my medical knowledge to violate human rights and civil liberties, even under threat.”

The Physician's Role

Even in ancient times, as can be gleaned from the Hippocratic Oath, physicians believed they knew what was best for their patients. Patients relied on their doctors' ability and judgment, and usually did not question the treatments prescribed. Doctors were not even required to tell their patients the details of their illness, even if they were terminally ill.

Beginning in the 1960s many patients assumed a more active role in their medical care. The emphasis on preventive medicine encouraged people to take responsibility for their own health. Physicians were faced with a new breed of patients who wanted to be active participants in their health care. Patients also wanted to know more about modern technologies and procedures that were evolving in medicine. With this new health consciousness, physicians and hospitals assumed the responsibility for informing and educating patients, and increasingly were legally liable for failing to inform patients of the consequences of medical treatments and procedures.

To compound the complexity of the changing patient-physician relationship, modern technology, which could sometimes prolong life, was also prolonging death. Historically, physicians had been trained to prevent and combat death, rather than to deal with dying patients, communicate with the patient and the family about a terminal illness, prepare them for an imminent death, or respond to a patient requesting assisted suicide.

Medical Education in Death and Dying

George E. Dickinson of the College of Charleston in Charleston, South Carolina, studied medical school offerings on end-of-life issues between 1975 and 2005 by mailing brief questionnaires to all accredited medical schools in the United States in 1975, 1980, 1985, 1990, 1995, 2000, and 2005. Table 3.1 shows trends in medical school offerings in death and dying from 1975 to 2005. The percentage of medical schools offering separate courses in death and dying fluctuated over those years, with a low of 7% of medical schools in 1975 to a high of 18% of medical schools in both 1990 and 2000. The percentage of lectures and short courses incorporating death and dying information also fluctuated from 1975 through 2005, with a low of 70% of lectures and short courses incorporating death and dying topics in 1995 to a high of 87% in 2005. Nonetheless, the number of students enrolled in death and dying offerings grew steadily during that time, growing slowly from 71% in 1975 to 77% in 1995. A jump then occurred, with medical schools reporting 96% of their students enrolled in death and dying offerings in both 2000 and 2005.

Table 3.2 shows trends in U.S. medical school offerings in palliative care from 2000 to 2005. (The goal of palliative care is to relieve symptoms and suffering, rather than to treat or cure disease.) In both 2000 and 2005 palliative care training was not covered in separate courses in many U.S. medical schools, with only 11% of schools offering a separate course in 2000 and 8% in 2005. The most popular mode of palliative care training by medical schools was incorporating palliative care topics as modules of larger courses. This was the case in 41% of medical schools in 2000 and in 59% of medical schools in 2005. The percentage of schools that included palliative care training throughout the curriculum and in clerkships in which students are usually assigned patients decreased from 22% in 2000 to 12% in 2005.

One program in particular stands out in death and dying education. The Education for Physicians on End-of-Life Care (EPEC) Project (http://www.epec.net/EPEC/webpages/index.cfm) is an ongoing, ambitious training program developed in 1998 by the American Medical Association (AMA). The EPEC Project has a death and dying curriculum that emphasizes the development of skills and competence in the areas of communication, ethical decision making, palliative care, psychosocial issues, and pain and symptom management. The program became fully operational in 1999 and provides curricula to all leaders of medical societies, medical school deans, and major medical organizations. The EPEC Project was supported from 1996 to 2003 with funding from the Robert Wood Johnson Foundation. After 2003 it was sponsored by and housed at Northwestern University's Feinberg School of Medicine in Chicago, with a mission to educate all health-care professionals on the essential clinical competencies in end-of-life care.

Contemporary Ethical Guidelines for Physicians

Physicians are trained to save lives, not to let people die. Advanced medical technology, with respirators and parenteral nutrition (artificial feeding devices that provide nutrition to an otherwise unconscious patient), can prolong the process of dying. Ira Byock admits in Dying Well: The Prospect for Growth at the End of Life (1997) that “a strong presumption throughout my medical career was that all seriously ill people required vigorous life-prolonging treatment, including those who were expected to die, even patients with advanced chronic illness such as wide spread cancer, end stage congestive heart failure, and kidney or liver failure. It even extended to patients who saw death as a relief from suffering caused by their illness.”

However, more recent medical education is changing this focus. The Council on Ethical and Judicial Affairs of the AMA published guidelines for physicians dealing with dying patients in “Decisions Near the End of Life” (2007, http://www.ama-assn.org/apps/pf_new/pf_online?f_n=browse&doc=policyfiles/HnE/H-140.966.HTM). They were originally written in 1991, reaffirmed in 1996 and 1997, and appended in 2000. The following guidelines are the most recent:

Our AMA believes that:

1. The principle of patient autonomy requires that physicians must respect the decision to forgo life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any medical treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment includes, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration.
2. There is no ethical distinction between withdrawing and withholding life-sustaining treatment.
3. 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. More research must be pursued, examining the degree to which palliative care reduces the requests for euthanasia or assisted suicide.
4. Physicians must not perform euthanasia or participate in assisted suicide. A more careful examination of the issue is necessary. Support, comfort, respect for patient autonomy, good communication, and adequate pain control may decrease dramatically the public demand for euthanasia and assisted suicide. In certain carefully defined circumstances, it would be humane to recognize that death is certain and suffering is great. However, the societal risks of involving physicians in medical interventions to cause patients' deaths is too great to condone euthanasia or physician-assisted suicide at this time.
5. Our AMA supports continued research into and education concerning pain management.

The American College of Physicians, another prominent professional medical organization, published its most recent recommendations about end-of-life care in the fifth edition of its code of ethics, The American College of Physicians Ethics Manual (2005, http://www.acponline.org/running_practice/ethics/manual/ethicman5th.htm). The guidelines for decision making near the end of life emphasize that capable and informed adults nearly always have the legal and ethical right to refuse treatment. They advise physicians to practice empathy, to compromise, and to negotiate with patients who wish to forgo recommended treatment. The guidelines offer an approach to clinical ethical decision making that not only involves defining the problems and reviewing facts and uncertainties but that also considers patients' wishes as included in written or oral advance care planning (advance directives).

PATIENT AUTONOMY

According to the principle of patient autonomy, competent patients have the right to self-rule—to choose among medically recommended treatments and refuse any treatment they do not want. To be truly autonomous, they have to be told about the nature of their illness, the prospects for recovery, the course of the illness, alternative treatments, and treatment consequences. After thoughtful consideration, a patient makes an informed choice and grants “informed consent” to treatment or decides to forgo treatment. Decisions about medical treatment may be influenced by the patient's psychological state, family history, culture, values, and religious beliefs.

Cultural Differences

Even though patient autonomy is a fundamental aspect of medical ethics, not all patients want to know about their illnesses or be involved in decisions about their terminal care. H. Russell Searight and Jennifer Gafford note in “Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians” (American Family Physician, vol. 71, no. 3, February 1, 2005) that the concept of patient autonomy is not easily applied to members of some racial or ethnic groups. Searight and Gafford explain the three basic dimensions in end-of-life treatment that vary culturally: communication of bad news, locus of decision making, and attitudes toward advance directives and end-of-life care.

Members of some ethnic groups, such as many Africans and Japanese, soften bad news with terms that do not overtly state that a person has a potentially terminal condition. For example, the terms growth or blood disease may be used rather than telling a person he or she has a cancerous tumor or leukemia. That idea is taken one step further in many Hispanic, Chinese, and Pakistani communities, in which the terminally ill are generally protected from knowledge of their condition. Many reasons exist for this type of behavior, such as viewing the discussion of serious illness and death as disrespectful or impolite, not wanting to cause anxiety or eliminate hope in the patient, or believing that speaking about a condition makes it real. Many people of Asian and European cultures believe it is cruel to inform a patient of a terminal diagnosis.

In “Cultural Differences with End-of-Life Care in the Critical Care Unit” (Dimensions of Critical Care Nursing, vol. 26, no. 5, September–October 2007), Jessica Doolen and Nancy L. York add similar cultural scenarios in communication about death and dying to those outlined by Searight and Gafford. Doolen and York note that Koreans generally do not talk about the dying process because it fosters sadness, and they believe such discussions may quicken the dying process. Those in the Filipino culture believe discussions of death will interfere with God's will and, as in the Korean culture, believe such discussions may hasten death.

The phrase “locus of decision making” refers to those making the end-of-life decisions: the physician, the family, and/or the patient. Searight and Gafford explain that the locus of decision making varies among cultures. The North American cultural norm is individual decision for one's own medical care. Koreans and Mexicans often approach end-of-life decision making differently, abiding by a collective decision process in which relatives make treatment choices for a family member without that person's input. East Europeans and Russians often look to the physician as the expert in end-of-life decision making. In Asian, Indian, and Pakistani cultures, physicians and family members may share decision making. Doolen and York add that, in the Afghan culture, health-care decisions are made by the head of the family, possibly in consultation with an educated younger family member.

An advance directive (often called a living will) is a written statement that explains a person's wishes about end-of-life medical care. Completion of advance directives varies among cultures. For example, Searight and Gafford note that approximately 40% of elderly whites have completed advance directives, whereas only 16% of elderly African-Americans have done the same. Doolen and York add that Mexican-Americans, African-Americans, Native Americans, and Asian-Americans do not share the typical American philosophy that end-of-life decisions are the individual's responsibility and are much less likely than the general American population to sign advance directives or do-not-resuscitate orders.

Polly Mazanec and Mary Kay Tyler suggest in “Cultural Considerations in End-of-Life Care: How Ethnicity, Age, and Spirituality Affect Decisions When Death Is Imminent” (Home Healthcare Nurse, vol. 22, no. 5, May 2004) that there are many differences among African-Americans, Chinese-Americans, Filipino-Americans, and Hispanics regarding the role of the family at the end of life, the preferences for the environment of the dying person, and the preparation of the body after death. Mazanec and Tyler suggest that often a lack of attention to such cultural needs in end-of-life care can be a predominant factor in a person's experience of dying.

Because of differences among cultures regarding various facets of end-of-life decision making and preparedness, it appears important for physicians to realize patient autonomy is far from a universally held ideal. There are differences of opinion not only among ethnic groups but also within each ethnic group, such as differences with age. People bring their cultural values to bear on decisions about terminal care.

Health-Care Proxies and Surrogate Decision Makers

When a patient is incompetent to make informed decisions about his or her medical treatment, a proxy or a surrogate must make the decision for that patient. Some patients, in anticipation of being in a position of incompetence, will execute a durable power of attorney for health care, designating a proxy. Most people choose family members or close friends who will make all medical decisions, including the withholding or withdrawal of life-sustaining treatments.

When a proxy has not been named in advance, health-care providers usually involve family members in medical decisions. Most states have laws that govern surrogate decision making. Some states designate family members, by order of kinship, to assume the role of surrogates.

THE DESIRE TO DIE: EUTHANASIA AND ASSISTED SUICIDE

Serious diseases such as acquired immunodeficiency syndrome and metastatic cancer have directed societal attention to end-of-life decision making because many patients who are suffering as they die would like their death to be hastened. In “Granted, Undecided, Withdrawn, and Refused Requests for Euthanasia and Physician-Assisted Suicide” (Archives of Internal Medicine, vol. 165, no. 15, August 8–22, 2005), Marijke C. Jansen-van der Weide, Bregje D. Onwuteaka-Philipsen, and Gerrit van der Wal reveal characteristics of patients in the Netherlands who explicitly requested euthanasia or physician-assisted suicide between April 2000 and December 2002. More than half the patients requesting euthanasia and assisted suicide (EAS) were male (54%). Most of the patients were diagnosed with cancer (90%). Even though only 9% were diagnosed with depression, 92% were “feeling bad.” The three most often cited reasons for requesting EAS were pointless suffering (75%), deterioration or loss of dignity (69%), and weakness or tiredness (60%).

Jansen-van der Weide, Onwuteaka-Philipsen, and van der Wal shed light on reasons physicians were reluctant to grant requests for euthanasia or assisted suicide. Of the 570 patients who had initially requested EAS, 65 died before EAS was administered, 72 died before a final decision was rendered, 68 changed their mind and no longer wanted EAS, 101 were refused, and 253 had their requests carried out. Physicians caring for patients in all five categories were reluctant to grant the EAS request in some cases. Physicians caring for 52% of the “refused” patients cited doubts about their patients' hopeless and unbearable suffering. This doubt was prevalent across groups. Other common doubts expressed by physicians were those about the availability of alternative treatment, personal doubts in particular cases, doubts about the patient being depressed, and doubts about a well-considered and persistent request. Not usually significant in a physician's reluctance to grant EAS were concerns that the patient was too close to death, that the request for EAS was voluntary, and that the family was against EAS.

According to Jansen-van der Weide, Onwuteaka-Philipsen, and van der Wal, the factor most likely to have influenced a physician to refuse an EAS request was the patient not being competent or fully competent (did not have all of his or her mental faculties). Another factor associated with refusal was the physician's perception that the patient's unbearable or hopeless suffering was experienced to a lesser extent than would be necessary to consider EAS. Depression was the reason most likely to have influenced a patient to request EAS and not wanting to burden his or her family was the second-most influential factor.

In “Desire for Euthanasia or Physician-Assisted Suicide in Palliative Cancer Care” (Health Psychology, vol. 26, no. 3, May 2007), Keith G. Wilson et al. discuss the results of their study on attitudes of terminally ill patients toward the legalization of EAS. Most (357) had no current interest in a hastened death, whereas a few (22) did. (See Table 3.3.) As in the Jansen-van der Weide, Onwuteaka-Philipsen, and van der Wal study, more than half of those interested in a hastened death were male (54.5% versus 45.5%). However, unlike Jansen-van der Weide, Onwuteaka-Philipsen, and van der Wal, 40.9%were diagnosed with depression. Wilson et al. determine that the desire for a hastened death was also associated with lower religiosity. Religiosity is the degree to which a person believes in and is involved in religion. It was assessed with three questionnaire items that addressed the patient's religious self-perception, attendance at organized services, and frequency of private prayer. The sum of these items, which could range from 0 to 15, was used as the religiosity index. The higher the score, the higher the religiosity. The religiosity index of those interested in a hastened death was lower (an average of 7.8 out of 15) than those with no current interest in a hastened death (an average of 9.7 out of 15).

Wilson et al.'s study also compares the symptoms and concerns of terminal patients with no interest in a hastened death to those of terminal patients who had interest in a hastened death. Much higher percentages of those interested in a hastened death had social concerns: 59.1% were concerned about being a burden to others as opposed to 23.8% of those not interested in a hastened death. (See Table 3.4.) Many more of those wanting a hastened death felt isolated (31.8% versus 10.4%), had communication problems (13.6% versus 1.4%), and had financial problems (13.6% versus 8.7%) than those not wanting a hastened death. Much higher percentages of patients desiring a hastened death had various physical and psychological symptoms, compared to patients not desiring a hastened death. Also, 54.5% of those wanting a hastened death reported that they were suffering as opposed to 23.8% of patients not desiring a hastened death.

As mentioned earlier, Wilson et al.'s primary goal was to determine the attitudes of terminally ill patients toward the legalization of EAS. The reason cited by the highest percentage of people for the legalization of EAS was a person's right to choose his or her own destiny (39.1%). (See Table 3.5.) The reason cited by the second highest percentage of people was suffering (32.4%). Other reasons cited by more than 10% of people for legalization of EAS were pain (26.1%); terminal illness (26.1%); a merciful, peaceful escape (12.6%); lingering (12.2%); low quality of life, no pleasure (10.9%); and nothing to be done (10.1%). In summary, those in favor of legalizing EAS believed that patients should be able to decide if their death should be hastened in a situation in which they had a painful, lingering, terminal illness with no hope of survival and a low quality of life.

Religious and moral concerns were at the forefront of reasons reported by those who opposed legalizing EAS. Wilson et al. note that 41.8% of people in this group believed that God decides when a person should die and that it is wrong to take a life (32.7%), even if it is your own life. (See Table 3.5.) Other than religious or moral concerns, a small percentage of people were concerned about abuse of such a law (14.3%) and that EAS was an inappropriate role for a physician (12.2%).