10
Barriers to Research and Promising Approaches

Given its unique nature, research on suicide faces a series of obstacles that limit progress in the understanding, prevention, and treatment of the problem. Because the field is a conglomeration of several disciplines that grew up independently, issues of interdisciplinary research pose problems of communication, jargon, and disciplinary rivalries (see IOM, 2000). Furthermore, recruiting researchers to the field is difficult because of the many obstacles that the field faces, as discussed in this chapter. As indicated in Chapter 1, the terminology used among suicide researchers is inconsistent. Consequently, it is difficult to obtain reliable numbers about the incidence and prevalence of suicide and suicide attempts. Working with patients that present a risk of suicide presents ethical and safety concerns that can be difficult to resolve. Special measures must be taken to increase the statistical power of intervention and prevention studies, since suicide is a relatively infrequent event. These approaches range from using alternate endpoints such as suicidal ideation to finding ways to increase the size of the population under study. Each has limitations.

This chapter first explores the methodological issues that affect the collection of data. Next, it addresses the ethical and safety issues surrounding research protocols with suicidal participants. Statistical approaches to addressing some of these barriers are presented. Options for working with the limitation of suicide’s low base-rate are presented at various points in the chapter. Finally, the chapter presents a center-based approach that can be used to advance the study of suicide.



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Reducing Suicide: A National Imperative 10 Barriers to Research and Promising Approaches Given its unique nature, research on suicide faces a series of obstacles that limit progress in the understanding, prevention, and treatment of the problem. Because the field is a conglomeration of several disciplines that grew up independently, issues of interdisciplinary research pose problems of communication, jargon, and disciplinary rivalries (see IOM, 2000). Furthermore, recruiting researchers to the field is difficult because of the many obstacles that the field faces, as discussed in this chapter. As indicated in Chapter 1, the terminology used among suicide researchers is inconsistent. Consequently, it is difficult to obtain reliable numbers about the incidence and prevalence of suicide and suicide attempts. Working with patients that present a risk of suicide presents ethical and safety concerns that can be difficult to resolve. Special measures must be taken to increase the statistical power of intervention and prevention studies, since suicide is a relatively infrequent event. These approaches range from using alternate endpoints such as suicidal ideation to finding ways to increase the size of the population under study. Each has limitations. This chapter first explores the methodological issues that affect the collection of data. Next, it addresses the ethical and safety issues surrounding research protocols with suicidal participants. Statistical approaches to addressing some of these barriers are presented. Options for working with the limitation of suicide’s low base-rate are presented at various points in the chapter. Finally, the chapter presents a center-based approach that can be used to advance the study of suicide.

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Reducing Suicide: A National Imperative METHODOLOGY Research on suicide is plagued with many methodological problems that limit progress in the field. Definitions lack uniformity, proximal measures are not always predictive of suicide, reporting of suicide is inaccurate, and its low frequency exacerbates all of these problems. Terminology There is a need for researchers and clinicians in suicidology to use a common language or set of terms in describing suicidal phenomena. Thirty years ago, NIMH convened a conference on suicide prevention at which a committee was charged with recommending a system for defining and communicating about suicidal behaviors (Beck et al., 1973). As a result of this committee’s work, operational definitions for basic terms such as suicidal ideation, suicide attempts, and completed suicide were proposed. Definitional issues were revisited in the mid-1990s at workshops held by the American Association of Suicidology, NIMH, and the Center for Mental Health Services, and through informal discussions among suicidologists (O’Carroll et al., 1996). Once again, the difficulties caused by lack of efficient communication and cross-talk were described, and a specific nomenclature with objective definitions of suicidal behaviors was proposed. Interestingly, many of the definitions proposed in this article were not appreciably different from those proposed for researchers more than a quarter of a century ago by the NIMH committee. Despite this seeming consensus, terminology continues to be an obstacle (see also Chapter 1). For example, “suicide attempt” does not uniformly include the intent to die. Since some who harm themselves do not actually intend to die (Linehan, 1986), assessing suicidal behavior is difficult. Not only are terms used differently across the field, they only infrequently are operationally defined in studies. Furthermore, often researchers do not reliably assess behavioral intent, since interviews can be unreliable (Linehan, 1997). Comparisons across studies also are complicated by differences in scales and instruments used to measure suicidality (see also Chapter 7). Many studies use only selected questions from questionnaires instead of the complete validated tool. Many of the studies do not report validity and reliability of instruments used. Low Base-Rate Event The base-rate of completed suicide is sufficiently low to preclude all but the largest of studies. When such studies are performed, resultant comparisons are between extremely small and large groups of individu-

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Reducing Suicide: A National Imperative als (suicide completers versus non-suicide completers, or suicide attempters versus non-suicide attempters). Use of suicidal ideation as an outcome can increase incidence and alleviate the problem to some extent; however, it is unclear whether suicidal ideation is a strong predictor of suicide completion. Using both attempts and completions can confound the analysis since attempters may account for some of the suicides completed within the study period. Because the duration of the prevention studies is frequently too brief to collect sufficient data on the low frequency endpoints of suicide or suicide attempt, proximal measures such as changes in knowledge or attitude are used. Yet the predictive value of these variables is unconfirmed. Statistical approaches (see Appendix A) and proximal endpoints may provide solutions, but a large population base is preferable. Psychological Autopsy A psychological autopsy is the reconstruction of the events leading up to the death; ascertainment of the circumstances of the death, including suicidal intent; and an in-depth exploration of other significant risk factors for suicide (Beskow et al., 1991; Brent et al., 1988; Brent et al., 1993; Cooper, 1999; Hawton et al., 1998; Kelly and Mann, 1996; Velting et al., 1998). The psychological autopsy is the standard approach to augmenting the information obtained from a death certificate. Information is gathered through a semi-structured interview with key informants, and discrepancies are resolved by re-interviewing informants and through a case conference using “best estimate” procedures (Mitchell, 1982). Among the key issues and risk factors addressed are: Circumstances and method of suicide Psychopathology Family history of psychopathology and suicidal behavior Social adjustments and functioning Personality characteristics, especially aggression/impulsivity Life stressors and supports, including religion Characteristics of treatment, especially in the 90 days prior to death. Physical health and medical history Socioeconomic background and family constellation Communication of suicidal intent Other record linkage (birth records, child welfare, school, criminal justice) Most studies have found that the optimal time to conduct this kind of investigation is between 2 and 6 months after the death. Informants’ emo-

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Reducing Suicide: A National Imperative tions may be too raw to conduct an extensive interview prior to 2 months after the death. Longer than 6 months after the death, many informants want closure on the suicide and no longer are willing to open up and discuss emotionally difficult topics. The quality of information, measured by the number of diagnoses generated, did not vary as a function of the amount of time since the death (Brent et al., 1988). Caution should be used when interpreting information gathered from friends and relatives; one experimental study found that subjects’ descriptions of psychological distress varied with characteristics of the deceased and aspects of the manner of death (Telcser, 1996). Use of a comparison group of individuals who died accidentally by similar means could strengthen validity of findings. In general, when case-control methods are used in psychological autopsy studies, the comparisons are made to individuals who died by natural causes matched on demographic variables or psychiatric diagnoses. The psychological autopsy has many similarities to the Family History-Research Diagnostic Criteria or any other indirect interview. The interview is less informative than a direct interview (Andreasen et al., 1977; 1986) but improves with the number of informants. Certain informants may provide specific information that may not be available from others. For example, friends of adolescent suicide victims may be more aware of substance use and abuse than parents (Brent et al., 1988). Employers and co-workers may be able to describe the victim’s functional ability on the job; for younger victims, interview of teachers and review of school records may play an analogous role. Certain types of information are very difficult, or even impossible, to obtain with a psychological autopsy approach. For example, sexual orientation is information that the victim may have been subliminally aware of, or may not have confided to a friend or parent. Information processing style, or other laboratory-based measures obviously cannot be obtained without the victim’s self-report. However, psychological autopsy studies can help to identify living individuals whose characteristics closely resemble suicide victims who can then be studied using more dynamic assessments. Combining biological findings with information about psychopathology, personality, family history, treatment history, and history of family adversity may provide a much more complete picture about the neurobiology of suicidal behavior. For example, altered serotonin in the brain may be a consequence of adverse rearing environments (Kaufman et al., 1998; Kraemer et al., 1989; Pine et al., 1997), and may very well be a consistent finding across different mental disorders. Conversely, psychological autopsy data may allow for the selection of relatively homoge-

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Reducing Suicide: A National Imperative neous sub-samples that can be subjected to genetic analyses. Complementary concurrent methods with intense, highly focused ethnography can improve knowledge about setting, process, motivations, and outcome, and thereby increase validity of data. SURVEILLANCE OF SUICIDE AND SUICIDE ATTEMPTS To address suicide as a public health problem requires the sustained and systematic collection, analysis and dissemination of accurate information on the incidence, prevalence and characteristics of suicide and suicide attempts. Surveillance is a cornerstone of public health, allowing realistic priority setting, the design of effective prevention initiatives, and the ability to evaluate such programs (IOM, 1999). Official suicide rates have been used to chart trends in suicide; monitor the impact of change in legislation, treatment policies, and social change; and to compare suicides across regions, both within and across countries. In addition, suicide rates have offered a way to assess risk and protective factors for geographical areas (counties, states and countries). However, there exist serious inadequacies in the availability and quality of information. The sources of data that are currently available remain “fragmentary and unlinked” (Berman, 2001). The need for improved and expanded surveillance systems is highlighted as one of the central goals of the National Strategy for Suicide Prevention (PHS, 2001). Completed Suicide: Sources of Variability in Suicide Statistics The suicide rate information available on a national level is derived from state vital records systems that collect data from local death certificate registries. States forward the information to the National Center for Health Statistics of the CDC which maintains the National Vital Statistics System (Davies et al., 2001). The utility and accuracy of these data are constrained by the variability in suicides statistics. As described in Chapter 2, there are at least four sources of this variability (Jobes et al., 1987; O’Carroll, 1989), including: regional differences in the definition of suicide and how ambiguous cases are classified regional differences in the requirements and political arrangements for the office of coroner or medical examiner differences in terms of the extent to which cases are investigated variations that have to do with the quality of data management involved in preparing official statistics.

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Reducing Suicide: A National Imperative Ambiguous Cases Classifications of deaths vary regionally (see also Chapter 6). Some jurisdictions, for example, require a suicide note in order to render a verdict of suicide, yet fewer than half of all suicide victims leave a note. Russian roulette deaths are called suicides in some jurisdictions but accidents in others (Keck et al., 1998). Religious traditions, life insurance policies, or actual legal sanctions may motivate underreports of suicide. Some jurisdictions tend to call any deaths with prominent intoxication an accident. All of these differences interfere in cross-site comparisons (Brent et al., 1987; McCarthy and Walsh, 1975). The verdict of “undetermined” (also known as “open verdict” in the United Kingdom) harbors many unreported suicides, with estimates ranging from 50–100 percent of all undetermined cases being true suicides (Brent et al., 1987; Cavanagh et al., 1999; Holding and Barraclough, 1975; 1978; Ovenstone, 1973). Undetermined verdicts appear to be more likely if the victim is older, died by poisoning, and is female, perhaps because this profile may not fit the archetypal suicide completer (Ohberg and Lönnqvist, 1998; Ovenstone, 1973). Studies suggest that the official suicide rate underestimates the true rate by about 30 percent, but that time trends are unaffected by classification errors (Brent et al., 1987; Gist and Welch, 1989; Sainsbury and Jenkins, 1982). There are other types of ambiguous cases that may be misclassified as accidents or homicides. For instance, some controversy exists about the degree to which vehicular deaths might be due to suicide (Jenkins and Sainsbury, 1980; Phillips and Ruth, 1993; Schmidt et al., 1977). “Victim precipitated suicides,” often in the context of “suicide by cop,” (Mohandie and Meloy, 2000; Wolfgang, 1958) are difficult to determine definitively, but may contribute to the underestimation of suicide. The availability of routine toxicology, physical evidence, autopsy, and psychological data can influence the classification of suicide. Larger jurisdictions may be able to investigate most comprehensively, making inter-jurisdiction comparisons unreliable (Nelson et al., 1978). Differential investigation by ethnic group and differences in willingness to share information with an investigator can also distort the picture of suicide. Training and Background of Coroner/Medical Examiner There are marked differences in the training and background of the persons who by law certify a death as a suicide among states within the United States (O’Carroll, 1989) and internationally (see also Chapter 6). In the United States, the qualifications range from simply having an interest in the job (e.g., Indiana) to specialized training in forensic pathology (e.g.,

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Reducing Suicide: A National Imperative Oklahoma). Medico-legal officials may be elected, appointed or serve exofficio (e.g., elected county sheriffs). Investigations may be centralized within a state (e.g., Rhode Island) or organized by each county (e.g., Utah). Each of these factors affects the nature, extent, and quality of the investigation and the classification of deaths as suicide. Danish and English coroners differ significantly by their threshold for certification of suicide (Atkinson et al., 1975). Yet, one British study showed that changes in coroners (within a country) did not result in significant changes in certification practices (Sainsbury and Jenkins, 1982). While some have reported that examiners with a medical background are more willing to certify a suicide as such, others found that more highly trained medical examiners were more likely to classify a death as “undetermined” (Murphy et al., 1986; Pescosolido and Mendelsohn, 1986). More recent studies have suggested substantial variability between different coroners’ courts and even within courts (O’Donnell and Farmer, 1995). Furthermore, reported rates in countries that are predominantly Catholic, such as Ireland, may be artificially lower because of a greater stigma associated with suicide and consequent greater reluctance to certify a death as a suicide (Jobes et al., 1987; Myers and Farquhar, 1998). Similarly, the low rates of suicide reported by Muslim countries may reflect possible diagnosis or reporting bias due to stigma (Wasserman and Varnik, 1998). Ongoing concern exists about the lack of quality monitoring of the persistently idiosyncratic death certification process (Maudsley and Williams, 1996). Local, State, and National Surveillance National data provide perspective on the scale of the problem of suicide, and permit the evaluation of the impact of federal laws. Given the low-base rate of completed suicide, national level data are necessary to aggregate enough cases to identify patterns of suicide across populations. National data also allow for the analysis of variations in the suicide rate by regions of the country and by different environments (e.g., urban vs. rural). However, state and local data are essential in order to examine suicide as it occurs in specific communities. The map found later in this chapter (Figure 10.1) demonstrates how suicide rates can vary widely across relatively small geographical areas. Understanding which specific qualities of the areas and populations tend to influence the suicide rate is critical for designing programs to enhance protective factors and reduce risk factors. Since many suicide prevention programs are implemented in community and school settings, more precise data are needed at these levels to be able to evaluate their effectiveness, recognize what services

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Reducing Suicide: A National Imperative FIGURE 10-1. Bayes Estimates of County-Level Deviations from the National Annual Suicide Rates per 100,000 (1996–1998). Adjusted for Age, Sex, and Race. may still be needed, and identify populations that have not been targeted. In addition, the evaluation of state and local policies and laws can only occur through state and local data collected over time. There is no precedent for federal law to require the reporting of health conditions to the national government. However, state regulations frequently mandate that details of various diseases and conditions be reported to the Centers for Disease Control and Prevention (CDC). For example, confirmed diagnoses of tuberculosis and various sexually transmitted diseases including AIDS are required by law to be reported in all states (Bunk, 1997). In the case of AIDS reporting, the CDC encouraged the states to pass such statutes by requiring the existence of surveillance regulation in order to receive funding for state AIDS prevention and treatment programs (Gostin et al., 1997). Similarly, for suicide surveillance, data should be collected at the local and state levels in a standardized manner so that it can be aggregated for a national reporting system.

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Reducing Suicide: A National Imperative Fatality Analysis Reporting System (FARS) The potential benefits of a state-based, national reporting system for suicides are great. Such systems have successfully been used to monitor the incidence and characteristics of public health concerns such as infectious diseases and motor-vehicle injuries. For example, the National Highway Traffic Safety Administration (NHTSA) maintains the longstanding Fatality Analysis Reporting System (FARS) to track the circumstances and incidence of motor-vehicle related deaths, which are similar to suicide in number (~40,000/year) (Barber et al., 2000; NHTSA, 2001). The system collects detailed information from the 50 states, the District of Columbia, and Puerto Rico within 30 days of the occurrence. A FARS report includes over 100 coded pieces of data on each crash and the vehicle and people involved (Davies et al., 2001). A state employed FARS analyst collects the required information from a variety of sources: police accident reports, state vehicle registration files, state driver licensing files, state highway department data, vital statistics death certificates, coroner/ medical examiner reports, hospital medical records and emergency medical service reports (NHTSA, 2001). Since its inception in 1975, surveillance data from FARS has improved our understanding of motor-vehicle injuries and the state and federal laws that affect traffic safety. For example, FARS data and vital statistics data were used to assess the effects of establishing 21 (vs. 18) as the minimum age to purchase alcoholic beverages (Cook and Tauchen, 1984; GAO, 1987). Based on their results, a federal law was passed that made federal highway funding to states contingent upon the establishment of 21 as the minimum age for purchasing alcohol (Wagenaar, 1993), and this policy is estimated to have saved 16,513 lives between 1975 and 1996 (NHTSA, 1996). National Violent Death Reporting System (NVDRS) A National Violent Death Reporting System (NVDRS) has been designed by researchers at the Harvard Injury Control and Research Center to collect information on homicides and suicides as well as other firearm deaths. It is based on FARS and on a pilot called the National Violent Injury Statistics System (NVISS) (Azrael et al., 2001). Currently 11 states and metropolitan areas are collaborating with NVISS to design and pilot test NVDRS. Ten sites have received grants from the project and collect data covering the states of Connecticut, Maine, Maryland, Michigan, Utah, and Wisconsin and in Allegheny County (PA), Miami-Dade County, metropolitan Atlanta, and San Francisco (HICRC, 2001). Legislation for Fiscal Year 2002 funding programs under the De-

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Reducing Suicide: A National Imperative partments of Labor, Health and Human Services, and Education (P.L. 107-116) included designated funding to the CDC’s National Center for Injury Prevention and Control of $1.5 million for continued planning and preliminary implementation of the NVDRS in selected states (AAST, 2002). It is estimated that a fully implemented system covering every state would require approximately $20 million per year (AAST, 2002). NVDRS collects information from four sources: death certificates, coroner/medical examiner reports, police Uniform Crime Reports (and, in some jurisdictions, police incident reports), and crime laboratories (HICRC, 2001). This diversity of sources is expected to allay some of the quality of data limitations that exist due to the irregular information available from the medical examiner/coroner system (see above, and IOM, 1999). NVDRS will collect detailed information on both victims and offenders, including basic demographics, substance use, relationship to one another, the circumstances leading to the injury, whether the event occurred at their home or work, specific of the incidents (e.g., date and location), and weapon type. For suicide deaths, this information will be supplemented by data on physical and mental health, treatment status, and possible precipitating life stresses. In the case of firearm involvement, the weapon’s type, make, model, and caliber will also be collected, and for deaths involving under-age shooters, information regarding how the weapon was obtained will be sought (HICRC, 2001). The researchers and pilot sites have developed uniform data elements, reporting protocols, and software for the reporting system (NFFIRS Workgroup, 2001; NVISS Workgroup, 2002). These technical details are centrally important to the future success of implementing this system on a national level; other concerns that must be addressed include ongoing technical assistance and extensive training to ensure quality and consistency of data (Gallagher, 2001). Surveillance of Attempted Suicides The quality of the data on suicide attempts is even more tenuous than that of completed suicides. The concerns about nomenclature (Garrison et al., 1991; O’Carroll et al., 1996) and accurate reporting (PHS, 2001) apply here even more than with suicide deaths. There is neither systematic nor mandatory reporting of suicide attempts in the United States. The two major sources of data on suicide attempts comes from the National Comorbidity Survey conducted between 1990 and 1992 (Kessler et al., 1999) and the Epidemiological Catchment Area study conducted in the 1980s (Moscicki et al., 1988). Other epidemiological data on attempts are available from small surveys in localized areas. Risk factors for attempts,

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Reducing Suicide: A National Imperative especially clinical factors, are surveyed, but often not through population-based surveys that would avoid the bias and lack of generalizability of clinical populations (Feinstein, 1977). Most information regarding suicide attempts must be collected from data systems designed for other purposes (PHS, 2001). This section describes a few of the potential models and sources of information on suicide attempts: the National Electronic Injury Surveillance System, the Youth Risk Behavior Survey, and the Oregon State Adolescent Suicide Attempt Data System. National Electronic Injury Surveillance System (NEISS). The NEISS has been operated by the U.S. Consumer Product Safety Commission (CPSC) for almost 30 years. In 2000, the system was expanded to collect data on all injuries, and since 1992 NEISS has collected information on all nonfatal firearm-related injuries seen in NEISS emergency rooms (Annest et al., 1995; Davis et al., 1996); some of these incidences may represent suicide attempts. NEISS is based on injury data gathered from the emergency departments of 100 representative hospitals selected as a probability sample of all 5,300+ U.S. hospitals with emergency departments (EDs) (grouped into 5 “strata,” four representing EDs of differing sizes and one from children’s hospitals) (CPSC, 2001). Given its current sampling system, the utility of NEISS is limited; the data can only be used for national estimates and are invalid at regional, state and local levels (GAO, 1997). In addition, because it does not use the International Classification of Diseases (ICD) coding system both the detail of data collected and the ease with which the data can be shared with other systems are limited (AdvanceMed, 2001). Youth Risk Behavior Survey (YRBS). The YRBS is managed by the CDC and includes national, state, territorial, and local school-based surveys of representative samples of students in grades 9–12 in participating jurisdictions. Its intent is to monitor risk behaviors associated with the leading causes of injury and death among adolescents (Kann et al., 1998). In 1997, the YRBS was conducted by 38 states, 4 territories and 17 large cities, in addition to the national-level representative survey (STIPDA, 1999). Concerns regarding the validity of self-reports presents particular problems for collecting information on suicide attempts by the YRBS (Ivarsson et al., 2002). In addition, some jurisdictions, especially less populous ones, choose not to include the items about suicidality out of concerns for liability and imitation. This introduces bias into the results when comparing geographical areas. How-

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Reducing Suicide: A National Imperative Suicidal individuals have been largely excluded from clinical trials. Evidence suggests, however, that high-risk participants can benefit from treatment trials and that certain research designs can increase the safety of participants. Evidence-based treatment protocols for suicidality are seriously lacking, making clinical trials critical. Clinical trials of drug and psychotherapy treatment should include suicidal patients. Appropriate safeguards, including safe study designs, should be used with such populations. Treatment trials often exclude suicidal individuals because of liability concerns. Re-framing this mortality risk to include comparison with risks in other types of medical trials underscores that suicide is an unfortunately expectable outcome of mental illness for some percentage of afflicted individuals. Suicide is not a consequence of the research or therapeutic intervention. Inform the public and Institutional Review Boards that mental illnesses are potentially fatal, and that for some percentage of individuals, suicide represents an unfortunately expectable outcome of mental illness. Lack of longitudinal and prospective studies remains a critical barrier to understanding and preventing suicide. Understanding the interactive risk and protective factors and their developmental course necessitates prospective, transactional research. Long-term assessment must occur for preventive interventions to be properly evaluated. Large, interconnected research centers have helped advance the science base regarding other societal problems, and are expected to do so for suicide, as well. A national network of suicide research population laboratories devoted to interdisciplinary research on suicide and suicide prevention across the life cycle should be developed. Such an approach would redress many of the current methodological limitations and resultant lags in progress. REFERENCES AAST (American Association for the Surgery of Trauma). 2002. National Violent Death Reporting System Receives Initial Funding. [Online]. Available: http://www.aast.org/nvdrs.html [accessed April 15, 2002]. AdvanceMed. 2001. Audit of the National Electronic Injury Surveillance System (NEISS) Hospitals. Final System-Wide Analysis Report to the U.S. Consumer Product Safety Commission. Agresti A, Lang JB. 1993. A proportional odds model with subject-specific effects for repeated ordered categorical responses. Biometrika, 80: 527-534.

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Reducing Suicide: A National Imperative To be, or not to be: that is the Question: Whether ’tis Nobler in the Mind to suffer The Slings and Arrows of outrageous Fortune, Or to take Arms against a Sea of Troubles, And by opposing end them; to die to sleep No more, and by a Sleep to say we end The Hart-ache, and the thousand Natural Shocks That Flesh is heir to; ’tis a Consummation Devoutly to be wish’d to die to sleep, To Sleep, perchance to dream; ay there’s the Rub, For in that Sleep of Death what Dreams may Come… —WILLIAM SHAKESPEARE Hamlet, Act III, scene I.