Measuring Desire for Death Among Patients With HIV/AIDS:The Schedule of Attitudes Toward Hastened Death

Initial questionnaire development began with the development of a pool of questions hypothesized to reflect different aspects of the construct of desire for hastened death. Repeated revisions of these questions, based in part on the feedback of a number of experts in the field of palliative care and consultation-liaison psychiatry (psycho-oncology, AIDS), ultimately yielded 30 questions. These questions reflected several aspects of the construct of desire for death, including an active desire for death, optimism/pessimism toward one’s future quality of life, social and personal factors that may influence willingness to consider assisted suicide or euthanasia, passive hopes for a more expedient death, and behaviors that might reflect a desire for death (e.g., preparing or revising one’s will, buying a copy of the book Final Exit). The questionnaire was designed in a dichotomous choice (true/false) format because we hypothesized that many specific thoughts or actions (e.g., “I am seriously considering asking my doctor for help in ending my life”) would be either present or absent. In addition, a true/false format was perceived by our panel of experts as a simpler, easier format for patients who are likely to be both psychologically and physically distressed, as well as burdened with other research tasks or instruments.

We then administered the scale to 55 patients with AIDS who were participating in a quality-of-life survey in order to elicit feedback regarding the clarity of writing, their level of discomfort in answering questions about death, and the relevance of the questions or frequency with which they were endorsed. On the basis of these preliminary data, five of the initial 30 items were deleted because of ambiguous wording and one item was rewritten to form two new items. Several items were retained in the scale despite being rarely endorsed because they appeared to most closely correspond to a high degree of desire for death if endorsed (e.g., “I am seriously considering asking my doctor for help in ending my life”). We also deleted six questions regarding actual behaviors that patients may have engaged in because of our observation (and the comments of respondents) that these items were not necessarily related to the construct in question. For example, several questions pertaining to end-of-life preparations (e.g., “I have recently made or revised my will or testament,” “I have preparations other than a will for after I die”) were thought to likely reflect a conscientious approach to living with a terminal illness rather than a desire for death. The remaining questions regarding actual behaviors were deleted (e.g., “I have pills or other means at home which I could use to end my life,” “I have already asked a friend or family member to help me end my life at some point”), despite appearing to reflect a desire for death. These questions were rarely endorsed by our pilot subjects and had little correlation with the total score on the Schedule of Attitudes Toward Hastened Death, and so, in light of the potential ethical problems if patients endorsed these items and later attempted suicide, these questions were omitted from the final scale. Thus, the resulting 20-item scale (appendix 1) was readministered to a new group of patients with HIV/AIDS in order to obtain the preliminary validation data described later in this article.

The measurement of desire for hastened death has become an increasingly important component of research on factors contributing to interest in assisted suicide and euthanasia. Here we present preliminary validation data on a newly developed research instrument, the Schedule of Attitudes Toward Hastened Death. It is a reliable and valid self-report measure assessing desire for hastened death among patients with HIV/AIDS. Reliability analyses demonstrated a high degree of internal consistency in this measure and strong item-total correlations, suggesting that the measure likely taps a single, unidimensional construct. This measure offers several advantages over the only existing measure designed to tap a similar construct, the Desire for Death Rating Scale (3). Unlike that instrument, which relies on clinician estimates of the degree of desire for death along a single 0–6 scale, the Schedule of Attitudes Toward Hastened Death allows for greater variability in desire-for-death ratings, which may be meaningful in future research. This measure allows for potential comparisons between individuals with low, moderate, and high levels of desire for death, and further research with larger and more heterogeneous samples may yield meaningful factors within the overall construct of desire for death.

Concurrent validity analyses followed an expected pattern of results, demonstrating that the total score on the Schedule of Attitudes Toward Hastened Death was highly correlated with the rating on the Desire for Death Rating Scale, a clinician-rated measure of desire for death. In addition, the score on the Schedule of Attitudes Toward Hastened Death was significantly correlated, although somewhat less so, with several measures of depression and overall psychological distress (e.g., the Beck Depression Inventory, Brief Symptom Inventory, and Hamilton depression scale). As expected, the scores on the Schedule of Attitudes Toward Hastened Death were significantly higher among patients with prior histories of psychiatric treatment or suicide attempts, demonstrating some sensitivity of this measure to overall psychological distress. These relatively modest associations, however, also support the discriminant validity of the Schedule of Attitudes Toward Hastened Death, demonstrating that it is not merely a proxy for psychological distress but, rather, is likely influenced by depression and distress. Several other findings, such as the significant correlation of desire for death with pain intensity and physical symptom distress, while consistent with expectations, included a relatively small subset of the overall study group and must therefore be considered preliminary.

Despite this limited number of subjects for some analyses, the observed findings are consistent with our expectations regarding anticipated associations with a measure of desire for death, and they support the construct validity of this self-report instrument. Several limitations must nevertheless be acknowledged. First, this study included only patients with HIV/AIDS and these findings may not generalize to populations with other chronic or life-threatening medical illnesses, such as cancer or multiple sclerosis. Patients with AIDS are somewhat unique with regard to demographic and background characteristics, overrepresenting minority individuals, those with a history of drug use, and persons of lower socioeconomic background. It is possible that similar analyses with other subject populations may yield somewhat different results—for example, indicating a more distinct factor structure than was apparent in our study group. Moreover, this study lacked any formal control group against which to compare the patients with AIDS. Because of the nature of the questionnaire, any “control group” must have a chronic, if not terminal, illness in order for the questions to be meaningful. Instead of attempting to contrast patients with AIDS against another medically ill group, however, we compared patients at a relatively early stage of disease with those in a terminal stage, finding, as expected, that patients in later stages of disease scored substantially higher on the Schedule of Attitudes Toward Hastened Death than ambulatory patients (although the difference was not statistically significant when we used a conservative nonparametric statistical test, the size and direction of the group differences were consistent with expectations). In addition, as treatments for HIV/AIDS continue to evolve, the proportion of patients expressing a desire for death and the relationships between desire for death and psychological/social variables may change. These limitations further highlight the need for additional research, both with HIV/AIDS patients and with patients diagnosed with other terminal and chronic illnesses.

Another limitation in these data pertains to the modest number of subjects available for many statistical tests. Because several measures were administered only to a subset of patients, many analyses included relatively small groups (e.g., correlations with the Desire for Death Rating Scale and Brief Pain Inventory). In addition, we were unable to use multivariate analyses to assess many interrelationships among variables that might have yielded interesting findings (although not central to the focus of this manuscript). For example, path analyses may be helpful in assessing whether there are more complicated relationships between pain, physical symptom distress, psychological distress, social support, and desire for death. It is certainly plausible that desire for death is related to different causal factors among different subgroups of terminally ill patients, and multivariate analyses (e.g., cluster analysis, path analysis) may reveal more complex relationships. This study, however, was intended not to determine the factors predictive of desire for death, but merely to assess the utility of a self-report measure for assessing desire for death.

Our interest in developing the Schedule of Attitudes Toward Hastened Death was to create a research tool for assessing the degree of desire for death, rather than a clinical tool to determine or predict who may or may not request assistance in dying. Although future research may demonstrate this to be a useful clinical instrument capable of predicting requests for assisted suicide or identifying patients with a significant desire for death who require more aggressive clinical interventions, we suggest that no evidence to support such uses currently exists. In the process of examining responses to the Schedule of Attitudes Toward Hastened Death, we did attempt to identify appropriate cutoff scores that would be helpful in determining which patients have a strong desire for death. These cutoff scores, however, are not intended to be used clinically, in an effort to determine whether a patient is likely to request assistance in dying (e.g., physician-assisted suicide or euthanasia) or whether such requests are “appropriate.” Indeed, our data suggest that while high scores on the Schedule of Attitudes Toward Hastened Death may correspond to a substantial desire for hastened death, this desire may be largely influenced by depression for many patients (as evidenced by the significant correlation between the score on the Schedule of Attitudes Toward Hastened Death and the level of depressive symptoms). Thus, while the Schedule of Attitudes Toward Hastened Death may have some clinical utility in facilitating a discussion of end-of-life issues between patients and health care providers, this measure is not intended to differentiate “rational” and “irrational” interest in hastened death or appropriate and inappropriate requests for assisted suicide.

In addition, choice of appropriate cutoff scores may differ depending on the purpose of the research. For example, investigators seeking to better understand desire for hastened death may desire a lower cutoff score to obtain a subgroup that includes individuals with even mild levels of desire for death. Researchers attempting to identify individuals likely to request or seriously consider assisted suicide or euthanasia, on the other hand, may wish to use a substantially higher cutoff score. Regardless of the use or validity of alternative cutoff scores, the potential clinical utility of the Schedule of Attitudes Toward Hastened Death as a means of facilitating discussion of end-of-life issues is supported by our observation that the participants reported little difficulty or distress while answering these seemingly sensitive questions. In fact, of the 195 participants, only three expressed a feeling that the questionnaire was upsetting and many more expressed relief or gratification that they were able to address these issues directly. Thus, health care providers may find that this instrument offers an alternative method for broaching end-of-life issues that are often difficult to discuss more directly.

Despite the limitations in this research, we believe these analyses demonstrate that the Schedule of Attitudes Toward Hastened Death is a useful, valid instrument for measuring desire for death among patients with HIV/AIDS and may have more general utility with other medically ill populations. Further research with this measure may be invaluable in addressing many of the unanswered questions emerging from the ongoing debates regarding legalization of assisted suicide. Moreover, this type of information will be essential in informing the development of guidelines for any future legislation or policies regarding legalization of assisted suicide. Only with adequate methods of measuring patient interest in hastened death can we answer such critical questions as what factors increase desire for death and what interventions (if any) decrease this desire. These and many other end-of-life questions require immediate attention in order to improve the quality of life of terminally ill patients and allow for informed decision making regarding such important public policy questions.

Received Nov. 7, 1997; revision received May 18, 1998; accepted July 10, 1998. From the Department of Psychology, Long Island University; and the Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York. Address reprint requests to Dr. Rosenfeld, Department of Psychology, Long Island University, 1 University Plaza, Brooklyn, NY 11201; [email protected] (e-mail). Supported in part by grants from NIMH (grant MH-49034; grant MH-54970, W. Breitbart, principal investigator) and the Open Society Institute Project on Death in America, Faculty Scholars Program (W. Breitbart). The authors thank the patients with AIDS who participated in this research and the colleagues who provided feedback and criticism during development of this instrument, including Drs. Russell K. Portenoy, Kathleen Foley, Jimmie Holland, Steven Passik, and Mark Smith, Nessa Coyle, R.N., and Sherry Schacter, R.N.