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Correspondence: Address correspondence to Terry Fulmer, PhD, RN, FAAN, Head, Division of Nursing, and Co-Director, Hartford Institute of Geriatric Nursing, New York University, 246 Greene Street, New York, NY 10003-6677. E-mail: terry.fulmer{at}nyu.edu
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Abstract |
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Key Words: Elder neglect • Multidisciplinary assessment team
The purpose of this paper is to describe one program that has developed a screening procedure for assessing EM, with a special focus on elder neglect by caregivers. This paper describes the neglect assessment team (NAT) at the Mount Sinai Medical Center in New York City and the key themes embedded in the neglect assessment process.
Background
Current estimates suggest that 4% of persons over the age of 65 in this country are victims of elder abuse and neglect (Pillemer & Finkelhor, 1988). This means that there are potentially over 700,000 cases of elder abuse and neglect, creating a major health policy imperative to improve our clinical guidelines and policy mandates for elder abuse and neglect. Further, it has been estimated that approximately 60–70% of all cases of alleged EM are in the category of neglect. The National Elder Abuse Incident Study (The National Center on Elder Abuse at The American Public Human Services Association, 1998) determined that of the 500,000 new cases of EM every year, fully 58.5% are neglect cases.
The American Medical Association convened a national conference on family violence in 1994, and included in its recommendations was a call for improved professional education on this topic (Aravanis et al., 1993). In 1995, the American Bar Association developed recommended guidelines for state courts handling cases involving elder abuse that included the topic of neglect as a serious issue requiring special study. Given the array of professional organizations that have noted elder abuse and neglect to be a serious problem, there are still few valid and reliable screening instruments for EM assessment. To our knowledge, no literature describes the processes and themes related to diagnosing elder abuse and neglect.
As a part of a larger study specifically designed to examine neglect in the context of an elder–caregiver dyadic relationship, a three-member interdisciplinary NAT, including a geriatric nurse practitioner, a social worker, and a geriatrician, was convened to review clinical data. These data, from the Mount Sinai Medical Center emergency department (ED) in New York City, were reviewed to detect neglect by a caregiver (Fulmer, Paveza, Abraham, & Fairchild, 2000; The Mount Sinai/Victim Services Agency Elder Abuse Project, 1988; Paris, Meier, & Ginsberg, 1993). Self-neglect cases were excluded in this study. Utilizing the Elder Assessment Instrument from Fulmer and Wetle (1986), the team was asked to make a determination of neglect or no neglect and then to collaborate with social services to determine an appropriate care plan to address any neglect. This process enabled the NAT to develop a better understanding of the process of screening for neglect. Specifically, it became clearer which signs and symptoms are especially important to the understanding and diagnosis of elder neglect, what factors contribute to a high-risk case, when such signs and symptoms are present, and what themes emerge in the neglect assessment process.
Approach
Data collected from the Elder Assessment Instrument in the ED were reviewed and evaluated by the NAT. With the use of data from the assessment screen, all cases were classified into one of three possible categories: neglect present, no neglect present, and unable to diagnose the case. Cases of other types of EM were referred to social services for additional follow-up.
Data were collected in the ED during patient intake as described by Fulmer and colleagues (2000). The Elder Assessment Instrument, a 46-item assessment instrument (see Figure 1), focuses on three broad categories and includes items that address signs, symptoms, and high-risk situations for EM (Fulmer & Wetle, 1986). The first section consists of the following items: general assessment, neglect assessment, usual lifestyle, social assessment, medical assessment, and emotional or psychological neglect (Fulmer, Street, & Carr, 1984; Fulmer & Wetle, 1986; Fulmer et al., 2000). Each section of the instrument provides space for the clinician to make comments and provide any explanatory information. The second section provides an opportunity for the screener to refer the case to social services for a more in-depth evaluation and intervention. The purpose of the final section of the Elder Assessment Instrument is to provide an opportunity for the screener to qualitatively describe the case. It is here that the screener communicates impressions based on the interaction with the patient or family during the interview. Completion of the assessment generally takes approximately 15 minutes.
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Sample
After human subjects approval, patients who met the study criteria were enrolled and screened for any EM utilizing the assessment instrument (Fulmer et al., 2000). Adults 70 years of age or older who presented at The Mount Sinai Hospital emergency department with a Mini-Mental Status Examination score of 18 or better, were English or Spanish speaking with a paid or unpaid caregiver of 20 hours a week or more, and had a telephone in the home were invited to participate (Folstein, Folstein, & McHugh, 1975). Cases were then reviewed by the NAT to determine if neglect was present. Four practice cases from the literature, plus 19 cases from those team meetings, were audiotaped and transcribed; they constitute the data set discussed here.
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These themes were used as a conceptual framework for a second round of analysis of the raw data, which used open, axial, and selective coding, and for deductively anticipating concepts indicative of neglect in these data.
Understanding the Underlying Health Status of the Elder and Caregiver
Understanding the underlying health status of both elder and caregiver emerged as a theme for diagnosing or justifying suspicions of elder neglect. NAT members wanted details of the patients' reasons for their visits to the ED, their health problems, and chronic ailments. Statements such as "I want to know what his underlying medical problems (are)" typify the desire of the team to fully understand the health of both the elder and the caregiver. The NAT sought a clear picture of the dyad's health circumstances and expressed frustration when health assessment data were lacking or nonspecific. Conditions related to the health status that were most often sought included the functional status of the elder, a history of previous visits to the ED, and the capacity of the caregiver to satisfy the health care needs of the elder.
Limited Functionality and Mobility
The functional and dependency status of the patients emerged as an important theme in the discussion of neglect. The "ambulation status" and whether the elder arrived at the ED alone or with a caregiver were meaningful to the NAT as important indicators of the level of function and dependency of the elder. For example, the NAT immediately agreed that elders who are functionally intact are different from those needing assistance when the team is diagnosing neglect. The NAT felt that "if [the elder] could walk around ... [and] go outside," he or she would likely be able to seek company and socialize. Under such conditions, the elder's ambulatory status becomes critical for assessing psychological neglect as different from indicators of isolation. Functional status had an impact upon the NAT's diagnosis of neglect.
Frequent ED Visits
The metaphor of a "frequent flyer at the ED" had particular meaning to the NAT, as a statement of concern regarding the magnitude of a patient's health care needs. Becoming aware of an elder's repeated visits to the ED led the NAT to explore in greater detail the nature of the elder's health status and medical management. The NAT expressed concern about the adequacy of the elder's health care management by caregivers and professionals. They considered elders who were frequent ED visitors to be at greater risk for neglect. They often questioned the underlying causes of frequent ED visits. For example, one team member asked, "what ... is this guy doing coming to the ER twice in one month, and does that mean that he's just not hooked up properly to a physician, or does that mean that there is other stress?"
Capacity to Provide Care
Conditions in which caregivers were unable to provide care were viewed differently from conditions of inadequate care from an able caregiver. The issues of "caregiver burden" and difficulties in providing care in specific care situations emerged in statement such as "if he's demented, he doesn't let her wash him up or whatever, or she can't physically do it, does that make it [neglect] ... Not necessarily!" As a strategy to better capture the underlying health status of patients, the NAT proposed to include "a summary of the past medical history (and) number of (ED) visits" as elements of the assessment screen instrument.
Understanding the Socioeconomic and Life Circumstances of the Dyad
Another important theme in the NAT discussions was the underlying socioeconomic and life conditions of the elder and caregiver. While discussing socioeconomic indicators from the Elder Assessment Instrument, the NAT sought to clarify the patient-caregiver relationship and "where they were coming from" in terms of the economic, family, and other situational factors that affect caregiving. The most salient conditions considered by the NAT were economic capacity, the cultural background of the members of the dyad, the nature of the caregiving relationship, and the elder's perceived need for support and subsequent willingness to accept care.
Economic Capacity
The NAT explored economic factors faced by the patient. Questions about whether an elder had insurance or not, or was covered by Medicaid and to what extent typifed the team's discussion exploring the financial situation of elders. Considerable time was spent discussing how information about social security payments and Medicare or Medicaid coverage was obtained during the ED assessment. Aspects of the elder's financial status were considered very important in trying to explain frequent ED visits and existing gaps in the provision of care at home for elders whose need for support was evident.
A distinction was made between elders with unmet needs caused by to lack of sufficient insurance coverage from unmet needs caused by neglect. However, the team expressed the belief that a higher risk of neglect was not always a consequence of being poor, because even in conditions of adequate economic capacity, some patient's care needs are difficult to satisfy. One member stated, "I have patients who are very wealthy ... that are demented ...," which may make them harder to care for than a patient without dementia, regardless of their financial status.
Caregiving Relationship
The NAT paid particular attention to whether patients arrived in the ED alone or accompanied by a caregiver. Also important to them was the number of hours of care received by the elder, as well as the blood relationship between the elder and the caregiver. The elder's description of the family situation was important for diagnosing neglect. One patient's description of her family as "old and sick" was incorporated into the team's analysis of her condition. Patients' subjective reports of their satisfaction with their living conditions were considered very important by the team but felt to be highly influenced by the patient's cultural background.
Sociocultural Background
The NAT viewed "cultural considerations" as important for diagnosing neglect. One team member stated, "[it's a] cultural question too, because some people get waited on all the time." The issue noted by the NAT was that some older patients seen in the ED might report being neglected, because of cultural preconceptions of care, even when they did not appear to meet generally accepted criteria for neglect. The team pointed out that the perception of some elders that they are neglected might arise from their expectations based on their particular sociocultural perspective. Therefore, the cultural background of a patient is considered by experts to be an important factor to consider in the assessment of neglect, particularly when the patient expresses feeling neglected by his or her caregivers.
Identity of the Caregiver
What is a caregiver? This question was discussed extensively. NAT concerns were related to the traits, characteristics, and responsibilities of caregivers. Features of caregivers considered relevant to the assessment of neglect in a caregiver–recipient relationship included the nature and basis of the relationship. Being a wife or a close family member was considered important in weighing indicators for suspecting neglect. The time spent in providing direct care (as in hours of care per week) was considered significant for judging the capacity of the caregiver to meet the needs of the elder as captured in the assessment screen data. The NAT generally agreed that the situations and conditions under which care is provided is more meaningful for assessing possible neglect compared with the blood relationship between caregiver and elder (i.e., whether someone lived close by or was a close blood relative such as a son or daughter).
Right to Self-Determination
The team distinguished between patients who refuse care, particularly "nondemented" elders, from elders willing to accept care or who acknowledge their need for assistance. A patient's right to ‘self-determination’ was a sensitive issue for reaching a diagnosis of neglect among team members and was addressed repeatedly. Consensus was reached, however, that elders who refused care were clearly distinct from those who needed and wanted care but did not get it. An important measure of agreement on a diagnosis of neglect was whether or not the elder made explicit an awareness of his or her need for the support provided by the caregiver. For example, the team discussed one patient who had a spouse and "they love each other very much, but he likes to be independent, [and] doesn't want the help." This self-determination created unmet needs, and it was a source of discussion.
Credibility of Data Collected by Others
The credibility of the data in the ED assessment screen emerged as an important theme. The NAT consisted of three expert clinicians who were most comfortable with obtaining information directly from patients. It was a challenge for NAT members to accept data from other clinicians who completed the assessment screen in the ED. Questions arose about how the instrument was administered and handled during the elder interview and about the screener's understanding of the meaning of the indicators listed and the format of the Elder Assessment Instrument. Even when it was explained that the prinicipal investigator had conducted special training sessions, and the interrater agreement checks were ongoing, the topic persisted.
Data Collected by Others: Elder Assessment Instrument Administration Technique
The team was very concerned about how the assessment instrument was administered. These concerns related to whether the screen data were either self-reported by the patient or from observations by the clinician or obtained from review of the patient's chart–medical history. For example, in reference to the alcohol–substance abuse item on the instrument, one team member asked, "do you [ED nurses] assess [this item] by asking the questions or just make an assumption, like there is not alcohol in the blood file?" Considerable effort was invested in questioning the exact procedures for collecting assessment screen data.
Early NAT discussions probably reflected the team's frustration when trying to reach consensus about elder neglect from their review of assessment data obtained by others, given their lack of personal contact with the patient. During this early phase, this feeling of exasperation was explicit in comments such as "[it is] frustrating [to make a judgment based on] data collected from other people." Team members also commented on how difficult it was to visualize the screener collecting the data from which they were expected to diagnose elder neglect. The NAT gradually developed confidence in the assessment data, as they were repeatedly made aware of how the clinicians had been trained, and how interrater agreement had been tested.
Contradictory Data
This concept emerged and was prominent in the early discussions of the NAT. The team made explicit their concern with what they perceived as inconsistent data in the assessment. A comment reflecting this was, "it [the screen] says his son is involved and then [it says] he's not involved." Review of the sections of the assessment screen data in this particular case helped to elucidate this concern. The assessment screen data showed that the elder's son was involved in helping the elder to take care of all financial transactions—actually the elder was totally dependent on his son for all his financial affairs—but was not involved in other aspects of the elder's personal life. The elder stated during earlier phases of the interview that he was totally independent; later on he stated he was totally dependent on his son for taking care of all of his financial affairs. This clarification created confidence in the data.
Generating Quantitative Data Using Scales in the Elder Assessment Instrument Screen
The instrument uses a Likert scale format for recording the estimate of the intensity of the indicators. The dimensions for different indicators vary among the different groups of indicators included in the instrument. The NAT had concerns regarding quantifying indicators on the instrument, as this sometimes created inconsistencies. The NAT often sought explanatory comments to understand the assessments. The NAT explored ways to improve the consistency and meaningfulness of the data in the assessment tool. In early discussions, one team member suggested that "the person [screener] ...write more comments on it [the assessment instrument]." It was brought to the expert's attention that a section at the end of the instrument is provided for the assessment nurse to write comments explaining any perceived inconsistencies and to provide a more thorough description of the patient's health status, subjective complaints, and life–environmental factors. The team agreed that a longer narrative for each of the patients would aid them in coming to a consensus. They considered this section of the instrument of significant value in assessing the screen data for evidence of neglect.
Consequences of the Outcome of the Assessment Process
The possible outcome of the team's diagnoses emerged as an important theme in the discussion of the case studies, but it did not recur in discussions of assessment screen data from actual ED screens.
Assessment Practice
The first NAT discussion session provided an opportunity for the team to practice assessment of elder neglect as a group activity and as an exercise to gain process skills to conduct the study. This led to extensive questioning of the principal investigator about what would be the final effect of his or her decisions on the management and disposition of the cases submitted for assessment. A recurrent concern was what would happen to the patient or the caregiver as a result of the NAT diagnosis. Concern was expressed that a positive screen might hurt an ongoing caregiving relationship. Once the team understood that standard hospital procedures were in place, the concern was resolved.
Professional Role
The case study format of the first four cases was easier for the NAT to process than the summarized assessment data from the ED. The familiarity of the case study format as part of the team's usual professional work elicited immediate care-planning responses. The NAT needed to become accustomed to a new role, which focused on making a diagnosis without responsibility for intervention. Early discussions of the NAT were dominated by a desire to implement interventions for the cases they felt appropriate in each case. In fact, the very first comment made by a team member during the first session in response to the case study was "interventions would be ...." Team members made explicit their need to address the issue of intervention, and great importance was given to the concept of clinical responsibility. The issue of professional and ethical responsibility in assessment of any form of mistreatment was considered to be critical by all members of the team. This concern was highlighted in a comment by the principal investigator about how, even in the midst of controlled studies or a clinical trial, nurses who become aware of a particular patient's situation intervene, even when the patient does not qualify to be a participant in the study. The team's concerns were addressed by acknowledging the importance of the ethical dimension of research involving human subjects. The NAT was reassured, after extensive discussions, that these concerns were being addressed. The NAT were eventually able to separate assessment activity from their impulse to address interventions and develop a care plan.
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The ED is a unique clinical setting for neglect assessment, not only because severe cases of neglect are likely to present in EDs, but also because of the rapid clinical pace resulting in the possibility that EM can be overlooked. The purpose of this exploratory analysis was to discover concepts considered critical by experts asked to diagnose elder neglect from data collected by ED health professionals. Interestingly, secondary data review is a usual process for adult protective services (APS) workers. The APS workers receive reports from a myriad of sources, and they must then visit the older person in the home to determine if EM occurred. By the time the APS worker goes on site, clinical circumstances may have changed either for better or for worse. There would be great merit in having expert clinicians give a diagnosis for the APS worker to follow up. Currently, the APS worker uses an assessment intake form that elicits information from professionals or lay persons, and, once the older adult has been seen (if that is possible), the case is confirmed or not confirmed. If the older adult is in danger, the police are usually called. This research points out the necessity of certain themes to be covered if expert clinicians will be able to diagnose a case of neglect.
Furthermore, a greater appreciation for this process is realized when the process used by the legal system is reviewed. The case is referred from clinicians to APS workers, who then confirm the case. If the case is serious, the police are called and the legal system (usually a District Attorney's office) is called. The District Attorney may then prosecute the case in the courts and may call upon an expert witness, usually an expert clinician in EM. It seems crucial to have the expert clinician engaged in the initial stages of the process, and in very the setting where the EM is being considered.
The use of an interdisciplinary team of experts to integrate knowledge and expertise is a luxury that not all systems can afford. Advanced expertise is frequently recommended for the problem solving of difficult cases, but in reality, APS workers are often left to make these judgments. Future research should examine if these two groups differ in processes and diagnostic outcomes. As already mentioned, the NAT in this study was composed of a geriatrician, nurse practitioner, and social worker, all with expertise in the area of EM. The unique perspectives of team members from different disciplines were captured in the transcripts of these discussions, and they proved essential here to a thoughtful and accurate diagnosis. Because there are many dimensions of neglect, our view is that it is essential to have input from an interdisciplinary panel. Expert clinical opinion continues to be the major source for diagnosis. The value of expert opinion from a variety of disciplines has always been recognized in research efforts of clinical practice in the field (Fulmer & Ashley, 1986). It is now undisputed that neglect is a complex phenomenon conceptualized in different ways by different disciplines of professional practice and in social science (Fulmer & Ashley, 1986).
The diverse research paradigms applied to the study of elder neglect create different approaches and ways of operationalizing the concept. This makes research results difficult to interpret under any one unifying theory (Fulmer & Paveza, 1998). However, each contribution provides new insights into different aspects of elder neglect assessment. Effective strategies for research on elder neglect requires acknowledging that the idea of neglect itself is conceptually dense, relating to both the elder–caregiver context and elder outcomes.
There is controversy related to the role of intentionality and neglect. Should the diagnosis of neglect be made on outcome alone? Must intent be understood? Few would agree with either statement. Data from this study underscore the complexity of thought in the diagnostic processes in neglect cases. Neglect is a multifaceted phenomenon that generates legal and ethical concerns. The demand for clearer diagnostic approaches will increase as professionals are asked to improve screening and treatment of neglect cases. Efforts to advance the understanding of the factors critical for recognition of elder neglect as a part of the clinical practice are needed. The issue of professional liability for noncompliance with mandatory reporting laws is not well understood. The legal requirements for reporting cases of EM should be examined to understand their effect on clinical screening practices. There is a call for the development of valid and reliable instruments for the assessment of neglect in all settings (Fulmer, Dyer, Connolly, & Guadagno, 2003; The National Center on Elder Abuse, 2001).
In summary, elder neglect is a complex phenomenon that requires a multifaceted approach for the diagnosis of cases. Although data from screens such as the Elder Assessment Instrument are important for determining if a patient is at high risk or has indicators of neglect, we found that an expert team provides long-standing experience and credibility for the final assessment and diagnosis. These data document the depth of information required to diagnose cases of neglect with any confidence.
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Footnotes |
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1 The Division of Nursing, New York University, New York.
2 Mount Sinai Medical Center, New York, NY.
Decision Editor: Laurence G. Branch, PhD
Received for publication April 17, 2002. Accepted for publication August 8, 2002.
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This article has been cited by other articles:
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  T. Fulmer, G. Paveza, C. VandeWeerd, L. Guadagno, S. Fairchild, R. Norman, I. Abraham, and M. Bolton-Blatt Neglect Assessment in Urban Emergency Departments and Confirmation by an Expert Clinical Team J. Gerontol. A Biol. Sci. Med. Sci., August 1, 2005; 60(8): 1002 - 1006. [Abstract] [Full Text] [PDF]
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