Voluntary euthanasia is the administration of lethal medications to a patient by a physician with the expressed intention of ending the patient’s life. For purposes of this chapter, instigation is by the patient of sound mind and is to be distinguished from unlawful “mercy killing.” Physician assisted suicide is defined as a physician providing medications or advice to enable patients to end their own lives. Legal and ethical distinctions exist between voluntary euthanasia and physician assisted suicide, and there are important psychological and practical issues as well. Many terminally ill patients have access to medications that could be lethal and yet do not use them to end their own lives. Many physicians prescribe medications with the knowledge, if not the intent, to provide the means for patients to end their lives.

This chapter will focus specifically on the growing social, medical, and ethical issues of physician assisted suicide and voluntary euthanasia in the person with HIV or acquired immunodeficiency syndrome (AIDS). Are suicidal ideation and behavior and physician assisted suicide and voluntary euthanasia related? Are HIV-infected people who contemplate suicide during the course of illness at greater or lesser risk for deciding to act or request assistance at the end of life? Do requests for physician assisted suicide or voluntary euthanasia in the course of deteriorating
illness arise out of the same underlying dynamic issues or social concerns at all points along the course of illness from the asymptomatic phase to end-of-life situations? Why do some act to end their own lives and some request the participation of others?

It is beyond the scope of this chapter to completely review the entire literature and debate on physician assisted suicide and voluntary euthanasia. Much has been written about requests for physician assisted suicide in general and in particular the experience in The Netherlands and Oregon, where voluntary euthanasia has been legalized.⁴,⁵,⁶

Although most jurisdictions in the United States do not have legislation supporting physician assisted suicide or voluntary euthanasia, and many have legislation prohibiting such action by physicians, it is clear from both research and clinical practice that physicians are not infrequently asked about their beliefs and practices of these. It is also clear, given the potential legal and professional issues, that requests for physician assisted suicide and voluntary euthanasia among patients with AIDS that are accommodated by physicians are under- reported. This chapter briefly reviews the history of suicide and HIV disease and the current state of knowledge about physician and patient attitudes and beliefs about physician assisted suicide and voluntary euthanasia. Finally, conceptual and current clinical issues are discussed.

Probably no pandemic in the history of the world has been complicated by the particular human behaviors that facilitate transmission. Unlike the hapless victims of the plague and the influenza epidemic of 1918, HIV disease is an epidemic that highlights the role of drugs and sex throughout the cultures and societies of the entire world. The stigma associated from the very beginning with behaviors that accrued social opprobrium has left an indelible mark on the people infected, affected, and at continued risk. Early on, HIV infection was known as Gay Related Immune Deficiency Syndrome (GRID), forever delineating the “guilty” from the “innocent” victims as HIV spread throughout the world. Although HIV infection is now a disease not contained in the initial populations, the stigma associated with contracting the disease is even greater, because the assumption continues that humans make all decisions based on rational estimations of risks and benefits. Early in the course of HIV spread, in the hopes of lessening the burden of blame, therapists and physicians discouraged making the route of transmission an issue of acceptance for treatment, applying the same approach to care to all. From a social policy standpoint, this made great sense to encourage testing and treatment. However, from a psychological perspective, although it presumably did not “matter” to the providers how someone got infected, it did to the individual; how people became infected was inextricably and intricately part of the coping defenses and capacity to manage the illness and subsequent behaviors that continued to put them and others at risk.

Since the beginning of the epidemic, the diagnosis of HIV infection has caused great physical, psychological, and spiritual suffering. Even with the advent of significant treatments that can prolong life, many people face an uncertain future, challenging even those with resilient coping mechanisms. In the third decade of the epidemic, HIV infection is increasingly a disease of vulnerable, stigmatized, and marginalized people who suffer from the comorbidity of psychiatric disorders, including substance abuse; other medical problems; and impaired psychosocial functioning as a precursor to or consequence of living with HIV disease.⁷,⁸ Concerns about active efforts to end life in this context are suffused with issues affected by cultural beliefs and fears of being expendable and less valued, reminiscent of the Tuskegee syphilis experiment.

This author frames the years from 1981 (with the identification of the first cases in the medical literature) as having three phases for purposes of conceptualizing psychological and social issues that may bear on coping and perhaps suicidal ideation and requests for hastened death. These three phases can be designated as described in the following sections.

Although clinicians have written about the psychological issues associated with suicidality in people with HIV disease,⁹ research studies are variable in the conclusions about HIV infection being an independent risk factor for suicidal ideation, attempts, and completions. Research has not yet delineated the impact of these three phases on issues of suicidality or interest and requests for hastened death among people infected with HIV. Most of the data reported in the literature refer to the phase I and II periods, as described previously.

The first reports from 1988 to 1992 about suicidality in HIV disease were from AIDS register—based or postmortem studies. Initial reports in New York City, California, and Texas showed significantly elevated relative risk for suicide (relative to age-controlled expected rates) in patients who died of AIDS: 66, 17.2, and 16.3 times, respectively. The National Center for Health Statistics in 1992 showed a relative risk for suicide of 7.4, the expected rate
for HIV-negative status. Several concerns need to be noted. First of all, these were retrospective studies of completed suicides. Second, there was no correlation of the suicides with psychiatric or neuropsychological impairment, such as HIV dementia, delirium, central nervous system (CNS) neoplasms, or metabolic dysfunction, that might affect mental status and hence impulsivity, executive dysfunction, and judgment. Additionally, it is not clear whether AZT monotherapy (which had been shown to reduce the incidence of HIV dementia) or any of the other prophylactic medications for opportunistic infections that were known to affect brain function might have influenced the risk for suicidal behavior in patients with AIDS. Steroids, antimicrobials, and antineoplastic agents have all been implicated in causing changes in mental state, from depressed mood to overt mania, further compromising the individual’s ability to manage difficult affective states or process what being sick with AIDS means in the personal and social context. Furthermore, because the vast majority of subjects studied were men who had sex with men, there was no established epidemiologic information about base rates of suicide in that group compared to the general population. Rates of suicide in the general population do not necessarily correlate with class or racial oppression. A further caveat with all the studies was that the conclusions could not be generalized to the developing countries.

Of significance, many studies reported rates of suicidal ideation and behavior that were higher than base rates in patients with preexisting psychiatric illness.²

Bonnet et al.¹⁰ reported on cause of death among HIV-infected patients in France from 1998 to 1999, after the beginning of the HAART era. Six percent of deaths were attributed to suicide or overdose.

Roy¹¹ examined 149 HIV-positive substance-dependent patients and found 44.3% had attempted suicide and 55.7% had not. Significantly more who attempted were female, and they scored higher on the Childhood Trauma Questionnaire (CTQ) for childhood emotional abuse, sexual abuse, physical abuse, and emotional and physical neglect.

Komiti et al.¹² reviewed 18 studies from 1989 to 2000. Different sample sizes, control groups, stage of HIV illness, time period (pre- or post-HAART), and methods of assessing psychiatric comorbidity do not permit a simple conclusion regarding the causative factors of suicidal ideation or behavior in the HIV-infected populations studied. The lack of consistency in methodologies, a variety of perspectives in what constitutes a real suicidal behavior, and the stigma associated with sexual orientation of the subject and knowledge about HIV status contribute to the confusion about what particular factors may explain the increased relative risk for suicide in HIV disease reported in many studies. Some studies report a direct link between HIV serostatus and suicidal ideation and behavior, whereas others suggest particular psychological pathways or psychosocial variables that preceded or derived from HIV infection that might contribute to increased suicidal risk rather than HIV itself: having a current or recent partner with AIDS, unemployment, bereavement, poor adaptive social functioning, depression, and hopelessness. Some reports suggest that there is greater risk for suicidal ideation (if not attempts) at different phases of HIV infection: new HIV diagnosis, change in acute medical status, length of illness. Some authors report no difference in risk according to stage of illness. Conflicting reports that advanced illness both increased and decreased suicidal ideation and behavior further confound the interpretation of the relationship between suicide and HIV status. Furthermore, what is not at all clear from the limited studies is the impact of HAART treatment on suicidal ideation and behavior. Several very important questions remain. What is the impact of successful HAART treatment on suicidal ideation and behavior? How do comorbidity of psychiatric illness, substance use, and hepatitis C infection affect outcomes? Does the risk for suicide increase when HAART fails for patients or patients fail to adhere to HAART and subsequently become more advanced in their illness? Given that more people in the United States are living longer on HAART, does advancing illness in the study subject in spite of treatment lead to increased hopelessness? What is the impact of bereavement on suicidal behavior? The question remains as to whether greater visibility of
people living longer with HIV disease lessens the level of stigma associated with HIV, a factor often noted as contributing to social isolation and suicidality.

The literature on suicidal behavior in HIV-infected females is less extensive, although it appears that females may be less affected by HIV status alone and more affected by comorbid substance use or social factors such as employment, housing, lack of support, relationship issues, and finances. Limited information suggests that minority women may have fewer suicidal concerns than nonminority women. Suicidal behavior appears to be increased in HIV- positive women who have a psychiatric diagnosis at follow-up.¹³,¹⁴