End-of-life issues: A survey of English-Speaking canadian nurses in AIDS care

End-of-Life Issues: A Survey of EnglishSpeaking Canadian Nurses in AIDS Care Michael G. Young, BA, MA, and Russel D. Ogden, BGS, BA, BSW, MA This anonymous postal survey explored attitudes and experiences concerning end-of-life decisions. Respondents were English-speaking members of the Canadian Association for Nurses in AIDS Care ( CANA C) and other nurses identified as working primarily in HIV/AIDS settings. Seventy-three percent believed that the law should be changed to allow physicians to practice voluntary euthanasia (VE) and assisted suicide (AS). Fifty-three percent indicated that nurses should be allowed to practice VE and AS. Although VE and AS are illegal, fewer than one infive nurses would report a colleague whom they knew to be involved in such acts. More than one in five nurses have received requests from patients to hasten their deaths by VE. Nearly 98% believe that the nursing profession should be involved in policy development concerning VE and AS, and nearly 78% believe that nurses should be involved in the decision-making process with patients if such acts were legal. Given that ethical codes for Canadian nurses promote client self-determination and that nurses are the largest group of care providers for the terminally ill, the profession must promote discussion and research if it is to take a leadership role with respect to end-of-life issues.

Key words: AIDS, nurse, euthanasia, assisted suicide, end-of-life, right-to-die Euthanasia and assisted suicide are end-of-life issues of intense public debate and controversy in Canada. They have been identified as important to the nursing community through the Canadian Nursing Association's (CNA's) discussion paper, A Question of Respect: Nursing and End-of-Life Treatment Dilemmas (Canadian Nurses Association, 1994), and through discussion articles in the Canadian nursing literature

(Ericksen, Rodney, & Starzomski, 1995; Registered Nurses Association of British Columbia, 1992; van Weel, 1996). In an address to the Special Senate of Canada Committee on Euthanasia and Assisted Suicide, the president of the CNA stated, '~l'he issues surrounding euthanasia are difficult and complex.., and the territory is certainly fraught with emotions. This explains why Canadian nurses, like the Canadian public, have not reached a consensus of opinion on these matters" (Ross, 1994, p. 5). AIDS groups have been aggressive in lobbying for patient choice on fight-to-die issues. The Canadian AIDS Society has stated that, with the compassionate help of a merciful physician, an incurably ill AIDS patient should be "permitted to choose death as their next form of treatment" (Canadian AIDS Society, 1991, p. 2). In 1994, the British Columbia Persons With AIDS Society (1994) published a position statement that called for legal, medicalized euthanasia. A similar position was adopted by, the AIDS Committee of Toronto ("Position Statement on Assisted Suicide," 1995). In Australia, the AIDS Council of New South Wales has published a document called Choosing to Die: A Booklet for People Thinking About Euthanasia and for Those Asked to Assist (van Reyk, 1995). Werth (1995) has argued that "AIDS may provide an impetus to change the traditional absolutist approach of suicide intervention and prevention into a contextual approach in which the intensity of suicide Michael G. Young is a PhD candidate at the University of Victoria. Russel D. Ogden is a PhD candidate at the University of Exeter. We would like to thank Andrew Johnson, founder of CANAC, for his assistance, guidance, and support with this study.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, VoL 9, No. 2, March/Apri| 1998, 18-25 Copyright 9 1998 Association of Nurses in AIDS Care

Young, Ogden / End-of-Life Issues 19 intervention is viewed as varying along a continuum" (p. 65). Werth theorized that the AIDS pandemic will increase the likelihood that professionals in a variety of fields will encounter persons with AIDS (PWAs) who are planning suicide, and many of these will be considered to have made rational decisions. Indeed, there is increasing evidence that PWAs frequently choose to die by euthanasia or assisted suicide (Bindels et al., 1996; Laane, 1995; Ogden, 1994; Slome et al., 1996). The growing body of survey research on euthanasia and assisted suicide is generally confined to the attitudes of physicians (Back, Wallace, Starks, & Pearlman, 1996; Baume & O'Malley, 1994; Cohen, Fihn, Boyko, Johnson, & Wood, 1994; Fried, Stein, O'Sullivan, Brock, & Novak, 1993; Kuhse & Singer, 1988; Searles, 1995; van der Maas, van Delden, Pijnenborg, & Looman, 1992; Verhoef & Kinsella, 1993, 1996; Ward & Tate, 1994). Given that the majority of physicians in Western countries are male and nursing is a predominantly female profession, a gender bias emerges with respect to research and ultimately social policy concerning the caregiver and patient relationship. Because nurses represent the largest group of caregivers for the terminally ill, it is imperative that the attitudes and experiences of nursing practitioners also be a focus in the discussion about end-of-life issues. Indeed, nurses are viewed as sources of emotional support, frequently are approached to discuss treatment issues, and are also trained to advocate compassionate care and the empowerment of patients.

Background and Significance In Australia, Kuhse and Singer (1993) surveyed 943 nurses and found that 23% of the respondents had, on at least one occasion, been asked by a doctor to take measures that would "directly and actively" end the life of a patient who had requested it. Sixteen nurses said that they had "complied with a patient's request to directly end his or her life, without having been asked by a medical doctor to do so" (p. 315). A survey of 1,210 American oncology nurses revealed that 44% agreed with the concept of physician aid in dying and that 73% would be prepared to remain in the room with a patient while a physician administered a lethal drug (Young, Volker, Rieger, & Thorpe, 1993). The researchers concluded that nurses who are

opposed to euthanasia are still willing to support patients who request it, indicating "a willingness to set aside personal beliefs to meet an expressed patient need" (p. 449). Leiser et al. (1996) surveyed 214 California nurses dealing with AIDS patients. Amajority (54%) reported having been asked indirectly, and 38% reported being asked directly to assist in a patient's suicide. Fifteen percent reported ever assisting a suicide, 7% reported assisting the suicides of AIDS patients in the workplace, and 10% reported assisting outside the workplace. When asked if they would help a patient obtain a lethal dose, 59% responded positively; 14% reported that they would administer a lethal dose. In a controversial survey of 1,139 critical care nurses, Asch (1996) found that 17% "had received requests from patients or family members to perform euthanasia or assist in suicide" (p. 1374). Many nurses (129) "reported that they had engaged in such practices" (p. 1374), usually through the administration of opiate drugs in large doses (for a discussion about the survey, see Scanlon, 1996). Clearly, the paucity of research on the attitudes and experiences of Canadian nurses regarding these issues represents a serious gap in the body of nursing knowledge. The 1995 annual conference of the Canadian Association of Nurses in AIDS Care (CANAC) featured both a keynote address and a workshop on the subject of assisted death. Because the topic was considered a priority to CANAC, we undertook a survey of the attitudes of their members. We were interested in determining if nurses in AIDS care encounter requests to end the lives of AIDS patients either through withdrawal of treatment, euthanasia, or assisted suicide. We also wanted to investigate how nurses translate end-of-life issues into practice, within the context of the Canadian Nurses Association (CNA) (1991) Code of Ethicsfor Nursing, which instructs nurses to treat "clients with respect for their individual needs and values" (p. 1) (Value I); "respect the rights of choice held by clients" (p. 2) (Value II); and states that "the nurse is guided by consideration for the dignity of clients" (p. 7) (Value IV).

Method An anonymous 32-item English-language questionnaire was sent to the 90 English-speaking members of

20 JANACVol. 9, No. 2, March/April 1998

CANAC. An additional 70 questionnaires were hand delivered to specific HIV/AIDS nurses in Vancouver, Toronto, and Halifax. The problems associated with translating the survey questionnaire and lack of contacts with the 43 French-speaking nurses working in HIV/AIDS settings led to their exclusion from the sample survey. The surveys and return envelopes were uncoded to protect anonymity, and there was no chance of follow-up with the participant sample. Following the logic of Schuman and Presser (1981), the items in the questionnaire relating to opinions and views contained the forced responses of "yes, no, undecided" because they produce more accurate data than Liken-type scales. Several questions also included qualifying responses such as "in certain circumstances" and "would you consider," thereby allowing respondents to give conditional responses according to their viewpoints. The survey was designed to gather information on nurses' experiences and attitudes relating to voluntary euthanasia (VE) and assisted suicide (AS). These include (a) demographic characteristics of the respondents and work-related experience in nursing, (b) attitudes toward the moral and legal acceptability of VE and AS, (c) attitudes toward the application of the CNA (1991) Codeof Ethicsfor Nursing to situations involving patients' requests for VE or AS, (d) the role of nurses in the development of policies relating to VE and AS, and (e) personal and professional experiences with VE and AS. The respondents were also encouraged to document any experiences and/or concerns they might have regarding VE and AS at the end of the survey. Given the current debate between voluntary euthanasia and assisted suicide, there is a possibility that nurses perceive the acts differently. For the purposes of the research, the participants were asked to respond according to the following definitions: Voluntary euthanasia is the administration of a treatment or an act that induces death, at the request of the patient (e.g., a lethal injection). Assisted suicide occurs when the patient has been provided with the means (e.g., a drug overdose) specifically for the purpose of suicide. In this context, the patient commits the final death-hastening act (e.g., swallows a lethal drug dose).

Results Forty-five of the 160 nurses returned completed surveys. The 28.1% response rate can be considered acceptable given the data collection method employed and that there was no follow-up reminder to the respondents. Nevertheless, there is a possibility of respondent bias: Nurses who were uncomfortable with the subject matter may have selected themselves out of the survey. Research on this issue has yielded mixed results. On one hand, Baume and O'Malley (1994) found that those individuals who choose to not respond tend to oppose euthanasia. On the other hand, Muller's (1996) study of Dutch general practitioners and nursing home physicians "did not find any support for the conjecture that the study topic or an individual's attitude to the topic (euthanasia) was a reason for not participating" (p. 95). In addition, the potential for respondent bias in this study is compounded by the social, political, cultural, and religious differences that may exist between the five regions in Canada and the fact that French-speaking nurses were excluded from the study. Therefore, the data are insufficient for inferential purposes. Given these limitations and the exploratory nature of the research, we present a descriptive analysis of the survey results starting with the demographic characteristics of the respondents. The remainder of the analysis is confined to three broad categories of interest: (a) nurses' attitudes toward the practice of VE and AS, (b) nurses' responses to the provisions relating to the CNA (1991) Code of Ethicsfor Nursing, and (c) nurses' practices regarding VE and AS and withdrawal of treatment causing death. Where applicable, the analysis is supplemented by nurses' personal comments.

Demographic Characteristics A majority (38 or 84.4%) of the respondents were female. Table 1 provides a summary of other selected characteristics. In addition, baccalaureate degrees in nursing were held by 15 (33.3 %), and graduate degrees were held by 6 (13.3%). Of the remainder of the sample, 17 (37.8%) held a diploma or certificate in nursing, and 7 (15.5%) held degrees other than nursing.

Young, Ogden/ End-of-LifeIssues 21 Table 1. Demographic Characteristics of Respondents Variable

Age (in years) Nursing experience(in years) HIV/AIDS experience(in years)

M

SD

n

40.71 19.09 8.58

9.08 15.42 14.35

45 44 44

NOTE: Cases with missing data are not included.

The Bioethics of Voluntary Euthanasia and Assisted Suicide

The respondents answered a series of questions relating to their perception of VE and AS as either moral or immoral. A response set for both VE and AS was offered for these questions in the event that nurses perceived the acts differently. The respondents were first asked, "Do you feel that voluntary euthanasia or assisted suicide is immoral?" VE was not considered morally wrong by 28 (62.2%), and 35 (77.8%) did not believe that AS was morally wrong. A question related to the morality of VE and AS asked whether informed and competent patients should have the legal right to request VE or AS. The request for AS was considered more acceptable than for VE (31 or 68.9% compared to 27 or 60%). With the exception of one respondent who firmly opposed VE and AS, several nurses commented that allowing long-term suffering may be more immoral than taking actions to hasten death. One nurse summarized this opinion: I recall my feelings at that time of relief for the patient and family because of imminent death and noted that the suffering I had witnessed had been alleviated. I felt no regret or guilt toward my participation and believed that it was my professional responsibility that comfortable death may be the outcome. Other respondents expressed ambivalence about the practice of VE and AS but supported the patient's right to make the final decision regarding an assisted death. One nurse indicated that she could not purposefully administer a death-hastening injection but would assist a patient to commit suicide.

In Canada, the act of euthanasia qualifies as murder and is punishable by life imprisonment. Counseling suicide or assisting suicide carries a maximum penalty of 14 years in prison. The respondents were asked if the law should be changed to allow physicians or nurses to practice VE or AS. The majority (33 or 73.33%) believed that the law should be changed to allow physicians to practice VE and AS, and 24 (53.3%) said that nurses should be allowed to practice VE and AS. The nurses were then asked whether they would report a colleague whom they knew had been involved in VE or AS. Only nine (20%) indicated that they would report VE, and six (13.3%) said they would report AS. The respondents were also asked whether they would report a physician whom they knew had been involved in VE or AS. Eight (17.8%) indicated that they would report VE, and six (13.3%) said they would report AS in these cases. Given the tremendous controversy concerning the practice of euthanasia in the Netherlands, a question outlining the legal situation of the practice in that country was employed to determine whether the same situation should exist in Canada: "In The Netherlands, physicians are now virtually certain not to be prosecuted if they end the life of a patient under the following conditions: this is the patient's well-considered wish; the patient has an irreversible condition causing protracted physical or mental suffering which the patient finds unbearable; there is no reasonable alternative (reasonable from the patient's point of view) to allex~iate the suffering; the physician has consulted with another professional, who agrees with his or her judgment." The majority (31 or 68.9%) said yes, 4 (8.9%) said no, and 10 (22.2%) were undecided. When asked if they would assist a physician in these circumstances, 19 (42.2%) said yes, 12 (26.7%) said no, and 14 (31.1%) were undecided. Related to the Netherlands' example is the expressed need for changes in law regarding the practice of VE and AS. Although none of the respondents made specific reference to the Netherlands' model, one nurse commented that "the law should be changed to make assisted suicide and voluntary euthanasia legal in certain circumstances." Several other respondents observed that nurses' respect of patient self-determination

22 JANAC Vol. 9, No. 2, March/April 1998

and dignity often take primacy over legal obligations. The tension between legal and ethical obligations prompted one respondent to write, "Canadian law must protect those who are asked to help in the assisted suicide or voluntary euthanasia of a person." The Canadian Nurses Association Code of Ethics

Grounded in the CNA (1991) Code of Ethics for Nursing is the notion that nurses should respect the client's individual needs, values, self-determination, and dignity. The survey contained several questions designed to explore these provisions. Although a majority of the respondents (26 or 57.8%) indicated that the right to self-determination should be limited in certain circumstances, most respondents believed that the patient's right to selfdetermination extends to VE (28 or 62.2%) and AS (29 or 64.4%). Most respondents (41 or 91.1%) agreed that patients have the right to refuse treatment, even if that refusal may lead to death. Not surprisingly, the professional obligation many nurses feel toward a patient's right to self-determination extends to VE and AS. As one respondent commented, euthanasia and assisted suicide "should have the same a t t e n t i o n . . , as legal a b o r t i o n . , someone asking for it should be treated with respect and dignity." The majority (44 or 97.8%) of the respondents believed that nurses should be involved in the development of social policy for both VE and AS. Moreover, using a hypothetical situation in which VE and AS were legal, 35 (77.8%) of the respondents said that nurses should be involved in the decision-making process with clients for both VE and AS. The importance of further dialogue is underscored by one nurse's personal experience with euthanasia. She observed that nurses need to be more actively involved in the decision-making process with patients and in discussions relating to end-of-life policy development. Increased access to palliative care services is proposed as an argument against the perceived need for VE and AS (New York State Task Force, 1994). The majority of nurses (29 or 64.4%) agreed that the provision of palliative care services would reduce the number of requests to physicians for VE and AS.

Table 2. Patients' Requests to Nurses Yes

WT VE AS

No

n

Percentage

n

Percentage

Total

21 10 5

46.7 22.2 11.1

22 34 37

48.9 75.6 82.2

43 44 42

NOTE: Cases with missing data not included. WT = withdrawing treatment; VE = voluntary euthanasia; AS ---assisted suicide.

Interestingly, only one respondent was employed in a hospice setting. Commenting on palliative care, one respondent indicated that both VE and AS are unnecessary in today's medical setting. Although she does not represent the majority, this respondent notes that "with today's palliative care, pain control etc. the last days can be made more comfortable and even happy." The Practice of Euthanasia and Assisted Suicide

The third category of questions began by posing the following hypothetical question: "If voluntary euthanasia or assisted suicide were legal, should nurses be involved in giving medications to patients for the purpose of voluntary euthanasia or assisted suicide?" Only 4 (8.9%) said yes for VE, and 5 (11.1%) said yes for AS. The majority indicafed that they would be willing to administer medications only in "carefully defined circumstances" (19 or 42.2% for both VE and AS). Of the remainder, 16 (35.6%) said no for VE, and 14 (31.1%) said no for AS. Similarly, when provided with the same hypothetical example, most indicated that they would be willing to participate in VE and AS only in carefully defined circumstances (17 or 37.8% for VE and 16 or 35.6% for AS), The respondents were then asked if a patient had ever requested them to hasten their death either by withdrawing treatment (WT), VE, or AS. As the data in Table 2 indicate, patients' requests for assistance are more frequent than might be expected, with WT being the most common request. Another question asked if the respondents knew, to the best of their knowledge, that doctors or nurses sometimes took active steps to hasten death, either by VE or AS. A total of 26 (57.8%) reported that doctors

Young, Ogden/ End-of-LifeIssues 23 perform VE or AS, and 13 (28.9%) reported that nurses perform such acts. The final question asked nurses if they had ever assisted the death of a patient. Atotal of 21 respondents indicated that they had assisted in the death of a patient, 20 (44.4%) by WT and 1 (2.2%) by VE. Of the remainder, 21 (46.7%) said they had not assisted a patient in hastening his or her death, and 3 (6.7%) were not sure.

Discussion Although the sample size limits the generalizability of the findings to all AIDS care nurses or other nursing populations, the study has implications for nurses working in AIDS care. Several points merit attention. Although the respondents expressed a preference for AS over VE, there was a consensus that neither was morally wrong. Furthermore, most (62% VE and 64% AS) indicated that the law should be changed to allow patients the right to request VE and AS and permit physicians and nurses the right to practice such acts. Similar support (68%) for the adoption of the Netherlands' model was also found, which suggests that nurses believe the practice of VE and AS should be regulated. However, fewer respondents (42%) indicated that they would be willing to assist a physician if Canada adopted the Netherlands' model. The variation between support for the Netherlands' model and the number of nurses willing to practice VE and AS is indicative of concerns regarding the potential for abuse. There was a consensus among respondents that the practice of VE and AS should not be forced on patients. As one nurse pointed out, the current trend toward cost effectiveness in the medical system will likely influence the end-of-life decisionmaking process. In this context, VE and AS may be used to deal with burdensome patients. There was also a consensus that VE and AS should not be forced on practitioners. In addition, several respondents indicated that caregivers involved in death-hastening practices should be competent professionals trained in the area. The overall support for the legalization and practice of VE and AS is not surprising given the CNA (1991) Code of Ethicsfor Nursing. Interestingly, more nurses agree with the right to self-determination around VE and AS than with the general fight to self-determination.

The strongest support for end-of-life decision making, however, emerges in the area of social policy. Clearly, nurses want to be involved in both the development of policies governing the practice of VE and AS (98%) and in the decision-making process with patients (78%). Support for the observation that nurses want guidelines for the practice of VE and AS is evident in the responses to their hypothetical and actual involvement in the acts. In this study, nurses were more willing to participate in VE (38%) than AS (36%) and were more comfortable with the idea of administering medications to hasten death (42% for both VE and AS) when there are carefully defined circumstances. The reluctance to report colleagues who violate the law or practice standards is common in most professions (Ogden & Young, in press). Therefore, it is not surprising that fewer than one in five nurses would report a colleague or physician whom they knew was involved in VE or AS. Moreover, given that nearly 60% of the respondents were aware of physician involvement in VE and AS and nearly 30% for nurses, it is quite probable that this is an occupational dilemma encountered by nurses. Given that physicians and nurses in Canada almost never face charges for VE and AS, it is possible that such acts are professionally tolerated. Such tolerance, although perhaps compassionate, undermines professional accountability to the general public. It is not surprising that nurses are commonly asked by patients to hasten death by the withdrawal of treatment, nor is it surprising that they carry out such requests. The common law in Canada recognizes the right of competent adults to both consent to and refuse medical treatment. Consistent with the CNA (1991) Code of Ethics for Nursing, Canadian courts have recognized that "the right of self-determination which underlies the doctrine of informed consent also obviously encompasses the right to refuse medical treatment" (Malette v. Shulman, 1990, p. 238). The data for this study indicate that CANAC nurses, consistent with the CNA (1991) Code of Ethics for Nursing, have a high regard for the ethical principles respecting individual needs and values, right of choice, and client dignity. Moreover, that more respondents view VE and AS morally acceptable (28 or 62.2% VE and 35 or 77.8% AS) but would not consider it for

24 .]ANAC Vol. 9, No. 2, March/Ap• 1998

themselves if terminally ill (25 or 55.6% VE and 27 or 60% AS) indicates that nurses are willing to set aside their personal values while respecting the choices of others. Nurses are more directly involved with patient care than are doctors, yet they lag far behind their medical colleagues in terms of research and debate on end-oflife issues. If nurses neglect to seriously address these issues, they may ultimately find themselves following the directions of physicians in a practice area that has direct implications for their profession. Moreover, if professional nursing associations fail to address endof-life choices with regard to their code of ethics, nurses risk being seen as out of touch with, and insensitive to, the needs of many seriously ill patients. The exploratory nature of this study has yielded data on a topic of intense debate in both the public and medical profession arenas. In Canada, this debate peaked with the high-profile Supreme Court case of Rodriguez v. British Columbia (1993). If Battin's (1994) claim that '~he right to die issue.., will become the major social issue of the next decade" (pp. 8-9) is correct, then it is paramount that the issue become a priority for discussion and further analysis by the nursing profession. This scrutiny, however, should not be limited to health care providers but must include research with patients facing end-of-life decisions.

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Young, Ogden / End-of-Life Issues Searles, N. (1995 ). Silence doesn't obliterate the truth: A Manitoba survey on physician assisted suicide and euthanasia. Manitoba: Manitoba Association for Rights and Liberties. Slome, L., Mitchell, T. E, Moulton Benevedes, J., Charlebois, E., Mandel, N., Townley, D., & Abrams, D. (1996). Physicians' attitudes toward assisted suicide in AIDS: A five year comparison study. Volume II: Xlth International AIDS Conference Abstracts, 2, 45-46. van der Maas, E J., van Delden, J.J.M., Pijnenborg, L., & Looman, C.W.N. (1992). Euthanasia and other medical decisions conceming the end of life. Health Policy, 22, 1-262. van Reyk, E (1995). Choosing to die: A bookletfor people thinking about euthanasia and for those asked to assist. Sydney, Australia: AIDS Council of New South Wales. van Weel, H. (1996). Euthanasia: Mercy, morals and medicine. Canadian Nurse, 91, 35-40.

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Verhoef, M. J., & Kinsella, T. D. (1993). Alberta euthanasia survey: 2. Physicians' opinions about the morality and legalization of active euthanasia. Canadian Medical Association Journal, 148, 1929-1933. Verhoef, M. J., & Kinsella, T. D. (1996). Alberta euthanasia survey: 3-year follow-up. Canadian Medical Association Journal, 152, 885-890. Ward, B. J., & Tate, P. A. (1994). Attitudes among NHS doctors to requests for euthanasia. British Medical Journal, 308, 13321334. Werth, J. (1995). Rational suicide reconsidered: AIDS as an impetus for change. Death Studies, 19, 65-80. Young, A., Volker, D., Rieger, P. T., & Thorpe, D. M. (1993). Oncology nurses' attitudes regarding voluntary, physicianassisted dying for competent, terminally patients. Oncology Nursing Forum, 20, 445-451.