Journal of Gerontological Nursing

THE SEARCH TO END SUFFERING: A Historical Perspective

Marianne LaPorte Matzo, PhD, RN, CS

Abstract

There was a time in American culture when a "good death" included self-assessment, repentance, and religious rituals with friends and family (Post, 1991, p. 34). A cultural shift within the last decade has occurred so that death is now often defined as an active blow against pain and suffering (Post, 1991, p. 34). Euthanasia and assisted suicide are viewed as one way to eliminate suffering; however, a dichotomy exists in this view in that suffering is inherent to our humanity and as such can never be eradicated (Post, 1991, p. 35).

Health care technology has progressed to the point where it is no longer unusual that biologic life extends past cognitive functioning (Battin, 1991). This technology has placed a double-edged sword into health care professionals' hands: the ability to use artificial means to extend life and the ability to use medications to terminate it. Patients in the health care system with terminal disease may choose to ask their primary health care provider to help them experience a painless and comfortable death and wish to determine the timing of it. Additionally, the patient may see this request as a right.

Nurses have recently been involved in discussions among themselves regarding assisted suicide and patient-requested euthanasia. This article explores the historical roots of the self-determination movement. Additionally, nursing research regarding the nurse's attitudes and role in these actions will be reviewed.

HISTORICAL PERSPECTIVES OF DECISIONS TO END LIFE

Ancient Societies

Suicide is the voluntary and intentional taking of one's own life (Best, 1986, p. 98). A review of the literature of attitudes toward suicidal behavior (Ingram & Ellis, 1992) indicates that suicidal behavior can be viewed as a reflection of a society's attitude toward life. Traditionally, suicide in American society was regarded as a highly unacceptable way of tenriinating human life. Attempted suicide was regarded as a serious problem behavior and shame was attached to the memory of those who successfully committed suicide.

Ancient societies appeared to tolerate suicide and euthanasia. Ancient Greeks held tribunals where elders could submit a request to die and would be given Hemlock if the request was approved (Ingram & Ellis, 1992). On the Greek island of Ceos in 500 B.C., poison was provided by the state in a public place for use by old people who were seriously ill or debilitated. Older people who felt that they had lived long enough could gather at an annual banquet and drink poison in first century B.C. Greece. Those elders who wished to die in the Greek colony of Masilia could obtain a lethal potion from officials once the elder had justified their wishes (Russell, 1977, p. 26).

Saint Augustine was very explicit in his reasons for condemning suicide; it was a "sin because it prevents repentance, it breaks the sixth commandment (Thou shalt not kill), and it takes the life of one who has done nothing worthy of death" (Best, 1986, p. 97). Thomas Aquinas wrote that suicide was a crime and a sin because "everything naturally loves itself and seeks to preserve itself in being, therefore, suicide is a mortal sin; it is an injury to the community of which one is a member; life is a gift from God and is held in trust" (Best, 1986, p. 98).

Europeans from the Middle Ages through the eighteenth century held an extremely negative view of suicide; the practice was strongly discouraged for social and religious reasons (Ingram & Ellis, 1992, p. 32). Self-murder was considered to be directly caused by the devil (MacDonald, 1989, p. 71). Punishment for suicide was mandated in the courts; if the person was…

There was a time in American culture when a "good death" included self-assessment, repentance, and religious rituals with friends and family (Post, 1991, p. 34). A cultural shift within the last decade has occurred so that death is now often defined as an active blow against pain and suffering (Post, 1991, p. 34). Euthanasia and assisted suicide are viewed as one way to eliminate suffering; however, a dichotomy exists in this view in that suffering is inherent to our humanity and as such can never be eradicated (Post, 1991, p. 35).

Health care technology has progressed to the point where it is no longer unusual that biologic life extends past cognitive functioning (Battin, 1991). This technology has placed a double-edged sword into health care professionals' hands: the ability to use artificial means to extend life and the ability to use medications to terminate it. Patients in the health care system with terminal disease may choose to ask their primary health care provider to help them experience a painless and comfortable death and wish to determine the timing of it. Additionally, the patient may see this request as a right.

Nurses have recently been involved in discussions among themselves regarding assisted suicide and patient-requested euthanasia. This article explores the historical roots of the self-determination movement. Additionally, nursing research regarding the nurse's attitudes and role in these actions will be reviewed.

HISTORICAL PERSPECTIVES OF DECISIONS TO END LIFE

Ancient Societies

Suicide is the voluntary and intentional taking of one's own life (Best, 1986, p. 98). A review of the literature of attitudes toward suicidal behavior (Ingram & Ellis, 1992) indicates that suicidal behavior can be viewed as a reflection of a society's attitude toward life. Traditionally, suicide in American society was regarded as a highly unacceptable way of tenriinating human life. Attempted suicide was regarded as a serious problem behavior and shame was attached to the memory of those who successfully committed suicide.

Ancient societies appeared to tolerate suicide and euthanasia. Ancient Greeks held tribunals where elders could submit a request to die and would be given Hemlock if the request was approved (Ingram & Ellis, 1992). On the Greek island of Ceos in 500 B.C., poison was provided by the state in a public place for use by old people who were seriously ill or debilitated. Older people who felt that they had lived long enough could gather at an annual banquet and drink poison in first century B.C. Greece. Those elders who wished to die in the Greek colony of Masilia could obtain a lethal potion from officials once the elder had justified their wishes (Russell, 1977, p. 26).

Saint Augustine was very explicit in his reasons for condemning suicide; it was a "sin because it prevents repentance, it breaks the sixth commandment (Thou shalt not kill), and it takes the life of one who has done nothing worthy of death" (Best, 1986, p. 97). Thomas Aquinas wrote that suicide was a crime and a sin because "everything naturally loves itself and seeks to preserve itself in being, therefore, suicide is a mortal sin; it is an injury to the community of which one is a member; life is a gift from God and is held in trust" (Best, 1986, p. 98).

Europeans from the Middle Ages through the eighteenth century held an extremely negative view of suicide; the practice was strongly discouraged for social and religious reasons (Ingram & Ellis, 1992, p. 32). Self-murder was considered to be directly caused by the devil (MacDonald, 1989, p. 71). Punishment for suicide was mandated in the courts; if the person was found to be sane at the time of their death, their property was given over to the crown and their bodies were "buried profanely" (MacDonald, 1989, p. 69). The eighteenth century saw a movement away from supernatural beliefs and courts increasingly found self-murderers non compos mentis (not of sane mind).

Cultural and Religious Views

Reform in die laws for self-murder came about as a result of a change in society and were implemented by lawyers and politicians (MacDonald, 1989, p. 86). MacDonald (1989) concluded that attitudes toward suicide have historically been most responsive to the political, religious, social, and cultural environments. From the nineteenth century to the present suicide had been considered an act committed by one who was insane.

In some cultures, suicide has been not only tolerated but encouraged under some circumstances. Some societies (e.g., Fiji Islands and India) that believe in life after death encouraged wives to kill themselves when their husbands died (Ingram & EUis, 1992). The Japanese have a casual attitude toward suicide and see it as a "sad but not morally ambiguous response to human relational struggles" (Post, 1991). Traditional Oriental society viewed suicide as an acceptable and dignified solution for coping with overwhelming problems and may influence their high level of suicide (Mcintosh & Santos, 1981; Post, 1991).

Religious beliefs reinforce culture prohibitions regarding suicide although religions vary in the strength of their negative views. Religious views of assisted suicide and patient-requested euthanasia are generally in agreement that assisted suicide and euthanasia is morally and ethically wrong. The reasons why it is wrong varies from religion to religion. In Judaism, for example "individual autonomy is secondary to the sanctity of human life" (Hamel, 1991, p. 56). Mennonites believe mat human life is a sacred trust from God. Buddhism also does not support euthanasia because terminal illness is considered to be the repayment of karmic debt and the complete evolution of this debt must not be disrupted.

The traditional arguments against assisted suicide and euthanasia have a theoretical root. Despite which religion one belongs to, the underlying message is that God is the giver of life and only God can take that life away (Post, 1991, p. 34). It can be considered "arrogant and pretentious" (Post, 1991, p. 34) to steal God's prerogative in regard to the timing of death.

World War Il

The German Reich used euthanasia during World War ? as a means of control. In September of 1939 Hitler signed a decree giving physicians the power to provide a "mercy death" (Boozer, 1980, p. 88). Three organizations were responsible for carrying out the euthanasia program: the Reich Association, Hospital, and Nursing Establishment; the Charitable Foundation for Institutional Care; and the Non-Profit Patient-Transport Corporation.

The program itself "involved the systematic and secret execution of the aged, insane, incurably ill, of deformed children, and other persons, by gas, lethal injection, and diverse other means in nursing homes, hospitals, and asylums. German doctors involved in the "euthanasia" program were also sent to Eastern occupied countries to assist in the mass extermination of Jews" (Boozer, 1980, p. 88). The program was expanded further to include "the insane, the 'useless eaters,' the deformed children, the 'social unfit,' and the concentration camp inmates. Healthy Jews were exterminated without examination" (Boozer, 1980, p. 89). Not only were physicians involved in officially screening and approving patients for the "program," but medical research was also tied to euthanasia programs. Some physicians requested and received as many as 600 brains to be used for research.

There are documented records of protest to this program from various religious organizations; this same type of documentation from medical groups is not on record. These religious appeals resulted in a temporary halt to the program but it was later reinstated as the model for the mass killing of Jews after 1941 (Boozer, 1980, p. 90). Modern day discussions of legalizing assisted suicide and euthanasia resonate with fear derived from this period of history. If such atrocities can occur under the physician's eye, can society rely on their humanity to prevent such actions from happening again?

Industrialization

Societal and cultural events have worked together to cause a cultural shift so that death is viewed as having little social consequence; industrialization and specialization of tasks have facilitated this move. Tasks that were once done within the confines of the family were now paid activities completed by outsiders. People were living longer but the timing and place of their death had also changed. Essentially, in the last 50 years the family has stopped being responsible for the care of sick relatives and the burial of deceased family members, chronically ill persons are hospitalized, and dependent elders may end their years in life-care communities or nursing homes (Fulton & Owen, 1988, p. 387).

This shift in care of the dead and dying was also accompanied by interest in euthanasia. The euthanasia movement echoed the values of a pragmatic society that would rather hasten death than to endure its pain and indignity (Fulton & Owen, 1988, p. 389). These changed American attitudes toward death produced a milieu conducive for the birth of the right-to-die movement.

The traditional health care environment placed physicians at the center of a paternalistic milieu with the nurse cast in the role of handmaiden and the patient playing the part of the obethent child. Society's blind trust in the medical establishment started to erode in the early 1960s with physicians' use of thalidomide that resulted in births of extremely deformed babies (Glick, 1992, p. 73). For the first time, modern medicine was seen as being able to inflict harm; society was faced with becoming advocates for their own health rights - including their perceived right-to-die.

From 1972 to the present, the right-to-die issue became a permanent item on America's social agenda (Glick, 1992, p. 75). The right-todie became an issue, in part, due to changes in medical technology and practice of medicine. In part, it was due to a civil rights and liberties revolution that increased social sensitivity to claims of personal freedom and autonomy (Glick, 1992, p. 76).

With the social attention on rightto-die issues came increased pressure on health care providers to yield to the wishes of their patients. In 1975, the Karen Ann Quinlan case began in the New Jersey Supreme Court and attracted national attention to the right-to-die agenda. The decision of that court in 1976 marked the nation's first official policy regarding the right-to-die (Glick, 1992, p. 66). That same year, California enacted the nation's first living will law which was the first piece of legislation that required a physician to do what the patient wanted done (Robbins, 1983).

At this time the American Medical Association not only opposed legislative policy granting the right-to-die, but also refused to issue its own guidelines (Glick, 1992, p. 67). These differences in views became the root of a 20-year discord between the traditional medical establishment and the general public. Inherent in this discord was the medical establishment's paternalistic belief that they know what is best for the patient, coupled with their Hippocratic oath to "do no harm."

The mid-1980s saw the modern day advent of the concept of rational suicide which was characterized by "a realistic assessment of the situation by the individual who is faced with the decision to commit suicide" (Ingram & Ellis, 1992, p. 34). The right-to-die movement, physicianassisted suicide, and rational suicide (sometimes called justifiable suicide or planned self-deliverance) (Ingram & Ellis, 1992, p. 35) brought with it no public outcry or large scale protests similar to protests associated with other "right-to-life" issues (e.g., abortion).

Initiative 119 came before Washington State voters in December of 1991. Washington State Citizens for Death with Dignity collected the 150,000 signatures necessary to put this question before the voters (Post, 1991, p. 34). The question failed by a very narrow margin but went on to be ratified in 1994. This bill allows a competent, conscious, terminally ill patient to request aid-in-dying. Death must be estimated by two physicians to be within 6 months and the patient's request must be in writing and witnessed. A physician would carry out the request by lethal injection (Post, 1991, p. 34).

The American public's search for control over their own suffering and death was reflected in the 1991 publication of Derek Humphry's Final Exit: The Practicalities of SelfDeliverance and Assisted Suicide for the Dying. This book provided recipes and concrete information so that people could effectively terminate their own lives without relying on the medical establishment for sanction or help. Humphry (1991) believed that the taking of one's own life in the face of the dying process was the ultimate act of self-control.

NURSING VIEWS AND HISTORY REGARDING ASSISTED SUICIDE AND EUTHANASIA

Norms of acceptable nursing practice have changed over the last decade (Coyle, 1992). Issues of autonomy, quality of life, and selfdetermination impact nursing practice. Eighty-five percent of deaths in the United States occur in institutions and 70% involve elective withholding of life-sustaining treatment (Coyle, 1992, p. 41). Nurses are involved in either the process of helping to make these decisions or the support of these decisions once they are made. This section will explore the evolution of the nursing profession's awareness and views of assisted-suicide and euthanasia.

Historically, the accepted system of nursing discipline was not unlike military discipline; Stewart wrote in 1943 that a nurse's role was "theirs not to make reply, theirs not to question why, theirs but to do or die" (Stewart, 1943). At this time, nurses were considered technicians whose job it was to do the physician's bidding. The professional role did not include independent decision-making.

In 1968 Shepard wrote one of the first articles questioning nurses' professional role in the right to die debate. She described nurses as "passive people who have carefully and efficiently followed the directions of their superiors in patient care" (Shepard, 1968, p. 22). It was not until the mid-1960s that nurses began to secure their own body of knowledge and to question the current standards of practice. She cited the dichotomy in the nurse's professional role between "relief of suffering" and "preservation of life" as one that was in need of clarification. Her call was to nurses to define their philosophy regarding death and dying and raise public awareness that people should have the freedom to die.

The 1970s produced professional articles that further pointed out the changing role of nurses and their place in the health care system. Prior to advances in medical technology there was little that could be done to save a patient once vital organs started to fail. Modern equipment could now maintain a person artificially. Nurses were often left in the position of lacking specific orders from physicians if a crisis were to arise (Hershey, 1971, p. 521). Physicians sometimes deliberately left nurses without specific orders for emergency situations. "Physicians apparently do not want to order measures to prolong life, or want to order a halt to their use" (Hershey, 1971, p. 522).

RN magazine published an article by a physician in the mid-1980s calling for health care providers to "help patients die" (Caplan, 1987). Caplan (1987) described a humane death as one that is "either in your sleep or being put to sleep." While not all the nurses responding to his article agreed with its premise, they all agreed that it was time for health care providers to debate this issue in a public forum.

The issue of quality-of-life and nurses' role in assisting their patients' deaths was raised by Kuhse and Singer (1989). They argued that modern medical technology gave the individual increased control over their lives and that many patients would not die unless a decision was made to withhold or withdraw lifesustaining treatments (Kuhse & Singer, 1989, p. 203). It was their belief that the nurse must consider the quality and quantity of life offered to the patient after treatment. The nurse's obligation was to act in the patienf s "best interests" so that s /he must consider quality of life issues when making medical decisions (Kuhse & Singer, 1989, p. 211).

Davis and Slater (1989) studied the attitudes and beliefs of nurses in Australia and the United States regarding aspects of passive euthanasia. A convenience sample of 30 American and 32 Australian nurses were interviewed and their responses to eight vignettes in which patients were likely to die were recorded. At the end of each vignette the nurses were asked to relate what they thought was usually done in the situation and what should be done. In only two of the vignettes did the American and Australian nurses agree on what should be done and what is usually done in the described situation. Neither group used age as a criterion for withdrawal of life support while prognosis and quality of life judgments were considered the most important information.

A survey (Nagi, 1990) of 189 randomly selected members of the Ohio Nurses Association (43% response rate) revealed that nurses differentiate between active and passive euthanasia, are patient-oriented, and see themselves as professionals capable and willing to make independent judgments on issues of medical ethics. This survey did not ask nurses what their actual practices were in relation to euthanasia or assisted suicide.

An international perspective was sought regarding nurses' decisions to feed terminally ill elder cancer patients (Davidson et al., 1990). Nurses from eight countries (n=169) were given the following case study: "A 75-year-old woman with cancer is mentally alert and has reached the terminal stage. When meals are served, she refuses to eat. What do you think you should do?" (Davidson et al., 1990, p. 288). Nurses in the United States, Canada, and Sweden all stated they would not feed the patient while all subjects in China decided to feed the patient. Nurses from the other countries were split as to how to proceed. This study did not ask nurses to make decisions about directly ending a patient's life, but rather to determine attitudes toward passive euthanasia.

The euthanasia debate in the nursing literature of the 1990s began to include a call for definitions between active and passive euthanasia, and appropriate nursing care (Roach, 1990). Roach (1990) distinguished between actively causing death (active euthanasia) and failing to act so as to cause death (passive euthanasia). Nurses were now involved in decisions to withhold or withdraw treatment and were in a position to make determinations as to whether or not this was appropriate care. The concern addressed in this article was that by calling appropriate care decisions to withhold treatment "passive euthanasia," nurses may contribute to society's acceptance of euthanasia itself (Roach, 1990, p. 28).

Questions regarding attitudes toward assisted suicide and patientrequested euthanasia can sometimes be found in ethics surveys. Lund and Wei (1990) included one such survey in the 1989 NovemberDecember issue of Geriatric Nursing. Six hundred twenty-three nurses responded to a variety of ethical statements. Fifteen percent agreed that a "dying person's request for help to hasten their death should be honored" while 90% believed pain medication should be given and would administer it to a dying person even if "hastening death" is a consequence. Six percent stated they would honor a dying resident's request to hasten their death.

Surveys of nurses' attitudes and practices with respect to assisted suicide and patient-requested euthanasia have been undertaken in other countries. Kuhse and Singer (1989) sent out a mail questionnaire to 1,942 randomly selected nurses in Australia (49% return rate) to survey their attitudes and the frequency of requests for active or passive help in dying from patients who were suffering from a tenninal or incurable disease. This study is one of the only studies that includes the report of nurses' actual practices when requests for assisted suicide and patient-requested suicide are made. Fifty-five percent of the nurses reported that they had been asked by their patients to hasten their deaths. The primary reason for these requests was reported as persistent and unrelievable pain; cancer was the primary diagnosis of those who made these requests. When such a request was made, 92% of the nurses discussed the request with another nurse, 90% with medical staff, 68% with a relative or close friend, 44% with a religious advisor, and 35% with someone else. Of those nurses asked by a patient to assist with their death, 5% indicated that they had complied with the request (6 only once, the rest two or more times). Twenty-three percent had been asked by a doctor to engage in an action that would directly and actively end a patient's life, 85% had done so and 80% had done so more than once. Three-quarters of the respondents supported a change in the law making active voluntary euthanasia legal and 65% were willing to be involved in the provision of active euthanasia if it were legal.

Young et al. (1993) conducted a descriptive study of 2,000 randomly selected Oncology Nursing Society (ONS) members (61% return rate) to explore oncology nurses' attitudes toward physician-assisted death (PAD) for competent, terminally ill adults who requested assistance. Findings indicate that oncology nurses hold diverse views regarding acceptability of PAD. Nurses who do not personally believe in PAD would be willing to support patients who request it. Prior relationship with the patient was an important variable in determining nurses' willingness to participate in PAD. PAD was considered more acceptable if the patient was described as suffering. Hospice nurses were less supportive of PAD than nurses in other practice settings.

Aroskar (1994) raised the issue that to assist a patient's request for assistance with dying may be the most sensitive and caring response a health professional can make. While some postulate that there is no difference between active and passive euthanasia because the outcome is the same, this author suggests that the intent of the health care provider in dealing with the dying patient is of primary importance (Aroskar, 1994, p. 5). If one takes an action to directly end a patient's life then these actions are illegal and ethically suspect. If the intent of the nurse is to alleviate pain and suffering, even if these interventions hasten death, then the nurse is providing competent and compassionate nursing care. She quotes Virginia Henderson in her 1966 definition of one aspect of nursing as "assisting individuals to a peaceful death when other goals are not possible" (Aroskar, 1994, p. 5). Nurses are major stakeholders in the euthanasia debate because their professional role and integrity are tied up in whatever legislative laws are made.

Members of professional nursing organization such as the American Nurses Association (ANA) and the Oncology Nurses Society (ONS) have increasingly verbalized a need for information and direction regarding ethical issues in nursing practice. The changing health care system, advancing technology, and cost containment plans all contribute moral and ethical questioning on the part of the nurse (Ersek, Scanlon, Glass, Ferrell, & Steeves, 1995, p. 804). Utilizing numerous national surveys of nurses, the ONS Ethics Advisory Council (EAC) compiled a list of priority ethical issues currently facing ONS members. The number one concern identified was die issue of assisted suicide which included defining the differences between active and passive euthanasia, and the importance of palliative care (Ersek, Scanlon, Glass, Ferrell, & Steeves, 1995, p. 805). The second priority was end-of-life decisions which included futile treatments, nutrition and hydration, donot-resuscitate orders, and aggressive treatments for the terminally ill patient (Ersek, Scanlon, Glass, Ferrell, & Steeves, 1995, p. 805). It is the hope of the EAC that this list will help focus education and research for the ONS membership and begin to help nurses sort through these difficult ethical dilemmas.

Using a structured interview method, Davis et al. (1995) asked 80 registered nurses under what conditions it would "be ethically justifiable to actively help patients to die by giving them some drugs" (Davis, 1995, p. 176). Twenty-one percent of those interviewed were able to ethically justify active euthanasia (AE). Those nurses able to justify AE used the concept of patient autonomy as their primary argument to support their position. The primary reasons used both to support justification of AE and opposition to AE included "the patient's right to autonomy, the sanctity of life, the quality of life, and professional integrity and nursing responsibility" (Davis, 1995, p. 179).

Asch (1996) surveyed 1,600 critical care nurses (71% return rate) asking them to describe requests that they had received for assistance with suicide or euthanasia. Seventeen percent of those who responded had received requests to engage in assisted suicide or euthanasia; 13% of these requests came from the patients themselves, 12% from a family member. Sixteen percent of the respondents stated that they had participated in assisted suicide or active euthanasia at least once in their careers and 8% had done so in the past year. One problem with this study is the author's lack of a clear differentiation between euthanasia, assisted suicide and palliative care. What is important, though, is that at last the question has been asked regarding nurses' practices of assisted suicide and patient-requested euthanasia. As a profession we must address the fact that, to some degree, nurses do participate in these acts.

The nursing profession has begun to actively pursue answers to difficult ethical dilemmas that in the early part of its history would have been considered out of their realm of consideration. Nurses are still grappling with a workable definition of these concepts and dilemmas as well as asserting their place in the discussion of these issues. In many ways the profession is still in its infancy in the dialogue on these topics. As nurses we have yet to ask each other not only what is thought about these issues, but also what our clinical practice has been in response to requests for assisted suicide and euthanasia. We are now in the position to openly confront these difficult questions and to have an impact on the development of public policy so that legislative mandates include a nursing perspective along with those from other healthcare providers.

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