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Psychosocial Assessment by Hospice Social Workers: A Content Review of Instruments From a National Sample
Accepted Manuscript Psychosocial Assessment by Hospice Social Workers: A Content Review of Instruments from a National Sample John G. Cagle, PhD, Philip Osteen, PhD, Paul Sacco, PhD, Jodi Jacobson Frey, PhD PII:
S0885-3924(16)30366-9
DOI:
10.1016/j.jpainsymman.2016.08.016
Reference:
JPS 9236
To appear in:
Journal of Pain and Symptom Management
Received Date: 6 June 2016 Revised Date:
1 August 2016
Accepted Date: 4 August 2016
Please cite this article as: Cagle JG, Osteen P, Sacco P, Jacobson Frey J, Psychosocial Assessment by Hospice Social Workers: A Content Review of Instruments from a National Sample, Journal of Pain and Symptom Management (2016), doi: 10.1016/j.jpainsymman.2016.08.016. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Psychosocial Assessment RUNNING HEAD: Psychosocial Assessment
Original Article
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16-00355R1
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Psychosocial Assessment by Hospice Social Workers:
A Content Review of Instruments from a National Sample
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John G. Cagle, PhD1 Philip Osteen, PhD2 Paul Sacco, PhD1
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Jodi Jacobson Frey, PhD1
University of Maryland, Baltimore, Maryland, USA Florida State University, Tallahassee, Florida, USA
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Address correspondence to: John G. Cagle, Ph.D., M.S.W., Assistant Professor, University of Maryland, Baltimore, School of Social Work, 525 West Redwood Street, 3W13, Baltimore, MD 21201; e-mail: [email protected] Number of tables: 3 Number of figures: 0 Number of references: 30
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Psychosocial Assessment Word count: 4,252 ABSTRACT
CONTEXT. Hospice social workers are charged with completing a psychosocial assessment for
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every new enrollee. This assessment is part of the patient’s comprehensive assessment and serves to inform the plan of care and key quality indicators. OBJECTIVES. To review the
content of hospice social work assessments because little is known about what assessment topics are included or overlooked. METHODS. Using a clustered random sample from all 50
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states, we contacted hospice agencies and requested a blank copy of the social work
assessment completed at intake. We then systematically reviewed the content of these
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assessments to determine which domains were included and which were omitted. A total of 105 hospice agencies participated (response rate 42%). Among the assessments provided, 76 (72%) were unique assessments. RESULTS. Participating hospices were largely freestanding (65%), non-profit (60%), and either medium (39%) or small (37%) in terms of average daily census. Over 60% of the sample assessments included content on: financial resources; family
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structure; coping resources; bereavement risk; past losses; caregiver depression; religiosity/spirituality; patient anxiety, patient depression; and advance directives. However, most assessments did not include items evaluating: patient physical/functional status;
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preferences for treatment/care; awareness of diagnosis, prognosis, or disease progression; communication and literacy issues; changes in relationship intimacy/sexuality; and cultural
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values, beliefs and customs. CONCLUSION. Hospice social workers should consider modifying their assessment practices to include a comprehensive array of assessment topics pertinent to patients and families. An accurate, comprehensive assessment that contributes to a holistic, interdisciplinary approach will likely lead to better clinical outcomes.
KEY WORDS: hospice; palliative care; psychosocial assessment; screening; end-of-life; social work Accepted for publication: August 4, 2016.
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INTRODUCTION
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Hospice provides care to nearly 1.6 million dying patients annually and 1.2 million US deaths occur while under the care of hospice (1). According to Medicare Hospice Conditions of Participation, hospice agencies are required to complete a comprehensive assessment for
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every newly enrolled hospice patient and their family (2). The psychosocial assessment conducted by social workers is an instrumental part of the full interdisciplinary hospice
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assessment, which must be completed within five days of patient enrollment (3). Thus, when new patients enroll in hospice, social workers are charged with conducting a thorough assessment of patient/family needs, risks, resources and coping. Information from these assessments is used to guide interventions, visit frequencies, care planning and referrals. However, little is known about the content, comprehensiveness and format of these assessment
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tools. If important psychosocial domains are missing from the initial social work assessment, then patient/family needs and key risk factors might be overlooked. To address this gap in knowledge, the current study evaluated the content of hospice psychosocial assessments being
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used in the US.
Systematic approaches to identifying and addressing psychosocial issues in hospice
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have demonstrated beneficial outcomes for both patients and families. For example, in a hospice clinical trial, McMillian et al. found that systematic assessment of patient depression led to decreased depression (4). In another randomized trial, the assessment of pain-management related worries expressed by hospice families, coupled with brief, tailored education, was found to reduce caregiver concerns, improve their knowledge and lower patient pain (5). Social work participation at the hospice intake visit, during which the initial psychosocial assessment is typically completed, is also linked with positive outcomes such as better team functioning and
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Psychosocial Assessment increased patient/family satisfaction (6). Thus, a better understanding of the assessment practices of hospice social workers may have direct implications for quality of care. Hospice is a patient/family-centered interdisciplinary model of end-of-life care that
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focuses on maximizing patient quality of life (1,2). Dying patients who enroll in hospice and their families have a wide variety of psychosocial support needs ranging from emotional care to
decision-making about long-term care options. Currently there is no consensus about which
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patient and family domains should be included in psychosocial assessments used by hospice social workers; nor is there agreement about the ideal format, structure or administration of the
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assessment. However, several scholars and professional and advocacy organizations have proposed a number of important focus areas for assessment. As summarized in Table 1, National Hospice and Palliative Care Organization (NHPCO) (1,7), the National Association of Social Workers (NASW) (8), and Social Work Policy Institute (SWPI) (9) have identified assessment domains that generally fall into nine categories. These categories are also reflected
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in recommendations by scholars in the fields of hospice and palliative care social work (10-12) as well as the Measuring What Matters project (13). At present, there is a notable absence of studies describing psychosocial assessments
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used by hospice social workers on a national scale. Given that the social work assessment is a critical component of the comprehensive hospice assessment, and the systematic assessment
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of psychosocial domains is linked to key hospice outcomes and quality of care domains, this information is vital to move the field forward. With this in mind, the purpose of this study was to describe and critically review the content and comprehensiveness of psychosocial assessments used by hospice social workers using a nationwide sample of intake assessments provided by hospice agencies. METHOD Design. Using a clustered random sample of all Medicare certified hospices in the US, we contacted a subset of hospices from all 50 states. Initial contact was established by phone
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during a three-month period in winter 2013-2014. Once contact was established our study team provided general information about the study and then requested a blank copy of the psychosocial assessment used by staff social workers to evaluate the needs of newly enrolled
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patients and families. All psychosocial assessments were systematically reviewed using a structured content review instrument developed by the study team to elicit data on format,
length and content. All study procedures were reviewed and approved by the University of
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Maryland, Baltimore, Institutional Review Board.
Sample. The sample was limited to Medicare certified hospices identified in the 2012
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Medicare Provider of Service File with beneficiary information added from the 2012 Medicare 100% Hospice Standard Analytic File, which includes an estimated 90% of all US hospice organizations (14). Using this list we randomly selected five hospice agencies from each state to contact and request a blank copy of the psychosocial intake assessment used by the social worker(s). Because hospices are regulated at the state as well as Federal level, we established
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this sampling approach to ensure that a wide variety of states would be represented. Proportional representation by state was not feasible due to budgetary limitations. Hospices had to be current providers of hospice services with an active patient caseload
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to be included in the study. Thus, entities such as non-hospice palliative care agencies and state-level advocacy organizations were excluded from the sample. Prison and pediatric
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hospices were also excluded as these agencies are population-specific and the psychosocial needs of their patients differ substantially from the general populations of hospice users. If an agency’s contact information was invalid, we attempted to find the correct contact
information using a general internet search and “find a hospice agency” search tools provided by NHPCO and the Hospice Foundation of America. The agency was determined to be inactive if corrected contact information could not be located. Defunct or ineligible agencies were replaced in the sample using a random process. One state only had three hospice agencies providing care within its borders, leaving a final contact list of 248 agencies for all 50 states ([49
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states x 5 agencies] + [1 state x 3 agencies] = 248 valid and eligible hospice agencies available for the total sampling frame). In a few cases hospice providers agreed to participate and provided descriptive data for
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the study but had reservations about providing our research team with blank versions of their psychosocial assessment. This was especially common when hospices were using a
standardized assessment from an outside electronic medical record (EMR) vendor (often due to
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concerns about sharing proprietary material, or technical difficulties related to producing
complete instruments for assessments that employ drop-down response fields or skip logic). In
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these circumstances, if a hospice provider disclosed which vendor supplied their psychosocial assessment and: (a.) our study team could verify that the version of the assessment was indeed standardized (i.e., not tailored to the specific agency); and (b.) we already had a blank copy of the psychosocial assessment instrument from that particular vendor in our research database – then we considered these hospice agencies to have participated by extrapolation. In the final
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sample 9 (8.6%) agencies participated by extrapolation. These nine agencies were using assessments from four different vendors.
Because some assessments being used by different hospices were the exact same
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instrument, we eliminated duplicate assessments to create a subsample of unique instruments. In total, 76 assessments, 72% of the full sample, were unique. Different versions of
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assessments by the same vendor were considered unique. Results of our content review are reported for the full sample as well as by unique assessments. Content Review Instrument. Using a compilation of guidelines and recommendations
from NASW, NHPCO, SWPI and the scholarly literature (Table 1) (1,7-13), our research team developed a structured assessment tool with which to evaluate the content, structure and comprehensiveness of hospice psychosocial assessments. The content review instrument included descriptive data about the agency (e.g., size, tax status) as well as the psychosocial
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Psychosocial Assessment assessment (e.g., format, vender, length) and key assessment domains for hospice patients and families. Three members of the research team evaluated psychosocial assessments using the
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structured content measure, and each instrument was reviewed by at least two different reviewers. Reviewers recorded whether a given sub-topic was, or was not, included in each unique psychosocial assessment. To ensure consistency among reviewers, a sample of 10
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different assessments (selected for variability of vendor and format) were separately coded by all reviewers. Coding discrepancies were resolved by group discussion. Reviewers were
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instructed to bring any vague or otherwise ambiguous content review decisions to the entire research team for resolution. In some cases, our review team was unable to definitively determine whether a specific topic was clearly included in the assessment. In these instances, a determination of “unclear” was made. During this preliminary work, the content review instrument was also tested and refined to improve clarity and comprehensiveness.
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Analysis. Sample characteristics (M and SD for continuous variables; frequency and percent for categorical variables) are reported to describe participating hospice agencies. Univariate statistics were also used to describe the features of the psychosocial assessments
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provided by agencies within the sample. To compare results of the full sample of assessments with the sample of unique assessments, differences in the percentage of topics included were
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calculated [(% “Yes” topic included in the full sample) - (% “Yes” topic included in the unique sample)], including the mean difference (and SD) across all assessment topics. A total of 105 hospice agencies from 48 states provided a copy of their psychosocial
assessment for review (response rate 42%). To estimate the impact of non-response bias, we pre-tested for differences between agencies that participated (the 105 agencies who provided our research team with a blank psychosocial assessment for review) versus those that did not (n=143). We used chi-square tests to examine differences in participation based on agency type
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and profit status. Student’s t-test was employed to explore differences in hospice size based on two variables: the number of patients served annually and average daily census. RESULTS
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As shown in Table 2, the majority (65%) of the sample consisted of freestanding hospice agencies; and most hospices (60%) were non-profit. The majority of hospice providers were either small (average daily census of <26; 37%) or medium sized (average daily census of 26-
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100; 39%). The sample was geographically dispersed across the four census regions ranging from 16% in the Northeast region to 31% from the South. In our assessment of non-response,
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none of the tests exploring differences based on agency participation were statistically significant at α=.05 (agency type, p=.62; profit status, p=.27; number of patients served annually, p=.06; and average daily census p=.19).
More than two-thirds (68.6%) of the assessments reviewed came from electronic formats (31.4% were paper-based). Assessments were generally lengthy, with 60% consisting of >60
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items (61-75 items, 25%; 75+ items, 35%) and 17 pages long on average (SD = 21; for electronic assessments 1 full screen = 1 page). Prominent assessment vendors included Allscripts, Briggs-MedPass, Cerner, Consolo, Homecare Homebase, McKesson, Mumms, and
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Suncoast (frequencies not reported to mask proprietary attributes). Full Sample. As reported in Table 3, there was substantial variation among
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assessments' inclusion of sub-domain topics, both within and across the nine identified assessment domains. Within the Patient Physical and Functional Status domain, the subdomain receiving the lowest amount of attention was delirium, which was included in less than a quarter (21%) of assessments in the full sample. Patient cognitive status received the greatest amount of attention, and was included in 56% of assessments. Notably, nearly half of assessments (49%) did not have items evaluating patient pain. More assessments included items for Patient Emotional and Mental Health than for other domains. Content on patient denial was included on less than half (48%) of assessments in the
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Psychosocial Assessment sample, but other items such as patient anxiety (74%) and depression (73%) were present in a larger proportion of assessments. For depression, determinations of “unclear” included, for
example, generic open-ended items inquiring about “patient mood/affect.” Within the Knowledge
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of Illness and Preferences domain, three quarters of assessments had content on the presence/need for advanced directives (75%) but far fewer included items on awareness of diagnosis (20%), prognosis (20%), trajectory of illness (11%) or preferences for treatment/care
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(35%).
Within the Family Coping and Bereavement Risk domain, few assessments had content
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exploring patient/family coping styles (24%), while other sub-domains were more frequently included such as coping resources (70%), bereavement risk (70%), and depression (78%). Under the domain of Family/Caregiver Health & Functional Status, the sub-domain receiving the greatest attention based on assessment content was family/caregiver current health status, which was included on just over half of assessments (51%), while family/caregiver cognitive
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status received the least attention (41%) within the domain.
In terms of Family and Relationship Issues, the majority of assessments covered subdomains of family structure (74%) and family conflict (65%), but not issues of intimacy (31%) or
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sexuality (9%). In the Culture and Religiosity domain, less than one-third of assessments included content exploring cultural values and beliefs (30%) or items asking about preferred
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customs/rituals (26%). Most unique assessments, however, did include items covering patient/family religiosity/spirituality (74%). The domain most frequently absent from assessments was Communication and Literacy
Issues. Only 18% of assessments included items regarding patient’s preferred language; 6% of assessments included content regarding health literacy. Similarly, only 19% of assessments had items on patient/family communication style, and 95% did not address decision-making style. In terms of Resource Needs & Safety, the most prevalent sub-domain was financial resources,
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Psychosocial Assessment which was included in just under three quarters (73%) of assessments, while psychological abuse received the least attention within this domain (included in only 16%). Unique Assessments. Findings in the sample of unique assessments were generally
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similar to those in the full sample. However, unique assessments tended to have a lower proportion of content on specific sub-domain topics relative to the full sample. On average, unique assessments included 6.9% (SD=5) fewer sub-domain topics. The largest discrepancies
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were observed on sub-domains of family caregiver guilt (a difference of -13.7%; included in 40% of assessments in the full sample, but only 26.3% of the unique sample), patient agitation (a
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difference of -13.4%; included in 37.1% of the full sample, 23.7% of the unique sample), patient delirium (a difference of -13.1%; included in 21% of the full sample, 7.9% of the unique sample), and patient history of mental illness (a difference of -13.1%; included in 55.2% of the full sample, 42.1% of the unique sample) – all of which had a higher proportion of topic content included in the full sample. Taken together, this indicates that assessments used by multiple
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hospice agencies tend to cover a more comprehensive array of topics compared to assessments used by only one agency.
DISCUSSION
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Our study is the first to provide a descriptive overview of psychosocial assessments being used by hospice social workers using a national sample. Based on our data, hospice
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social work assessments indeed include content on important topics such as: financial resources; family structure; coping resources; bereavement risk; history of losses; family caregiver depression; religiosity/spirituality; patient anxiety and depression; and presence of, or need for, advance directives (all included in >60% of assessments in the sample). However, we also found that many of the assessments being used by social workers currently omit critical psychosocial topics – and, therefore, are lacking and not truly comprehensive. Most assessments in our sample, for example, did not include basic items evaluating: patient physical or functional status – including patient pain; patient preferences for treatment/care;
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Psychosocial Assessment patient/family awareness about diagnosis, prognosis, or disease progression; communication and literacy issues; changes in relationship intimacy/sexuality; and cultural values, beliefs and
customs. If social workers are neglecting to inquire about these important domains during their
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clinical interactions, then key patient needs may be missed and patient/family care plans may be incomplete.
Many aspects of patient physical and functional status were not evaluated in hospice
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social work assessments. With the exception of patient pain and cognitive status, the remaining topics related to physical and functional status (i.e., primary diagnosis, agitation, dyspnea,
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fatigue, delirium, functional status, and activities of daily living) were absent in the majority of assessments. This may be due to narrow beliefs about job roles; more specifically, beliefs that physical domains should be evaluated by other team members, such as a nurse or physician, and not by social workers (15). However, without such information social workers will not have a complete picture of the entire patient/family context. With a thorough understanding of the
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patient’s physical/functional situation, social workers can then coordinate with other team members to address distressing physical symptoms, maximize patient independence, and work with informal caregivers to ensure that they are prepared to meet the physical and functional
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needs of the patient. Furthermore, capturing patient medical and functional data is consistent with the biopsychosocial approach embraced by both the hospice philosophy of care (16) as
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well as the social work discipline (17,18). The assessment and treatment of pain and other distressing symptoms is a core aspect
of hospice care. Furthermore, social work scholars in hospice and palliative care have argued that the assessment of patient pain is an ethical imperative for social work clinicians (19,20). Unfortunately, based on our review, nearly half of hospice social work assessments may be neglecting this critical domain. Perhaps social workers are also deferring this responsibility to other team members. However, the social work perspective is important to include in the evaluation of patient pain in hospice. This is because there are numerous psychosocial aspects
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of pain and pain management (5,21,22), in addition to the potential for pain to exacerbate other psychological problems (20). We also found that assessments generally lacked items evaluating communication
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patterns, language and health literacy issues. In particular, assessments did not include prompts about the patient/family’s communication style, decision-making style, preferred
language and health literacy. These assessment topics can help social workers identify the
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need for translation services, education/learning needs, and optimal ways to communicate difficult information and facilitate decision-making (e.g., goals of care conversations, completion
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of advanced directives). Indeed, this is a critical assessment domain; one central to maintaining a person-centered care approach, and the findings of which are essential information for all members of the interdisciplinary team to know. The National Academy of Medicine (formerly the Institute of Medicine) recently published a summary of their workshop on communication and health literacy in palliative care, which emphasized the centrality of the tactful and accurate
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exchange of clinical information, using plain language with patients and families, as well as the need to help them navigate complex care-related decisions (23). Thus, assessment information about patient/family communication needs and preferences are paramount and directly inform
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hospice care processes. Without such insight into communication needs and literacy issues, the effective transfer of clinical communication and, ultimately, the quality of care will likely suffer
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(24).
Assessment items pertaining to patient/family cultural beliefs and rituals were notably
absent from most (>2/3) assessments in our sample. Patient/family responses to illness, death and loss are culturally informed and, thus, social workers should be aware of the unique cultural needs and preferences of each family. Over two thirds of assessments did not include items exploring issues related to intimacy or sexuality. Intimate, loving relationships are critical components of patient quality of life, and related patient concerns should be tactfully, but directly, and addressed by the social worker and hospice team. A recent study of palliative care
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Psychosocial Assessment patients found that 71% of those at the end of life (survival of 3 months or less) reported that
their illness had either significantly or moderately impacted their intimacy – and 100% indicated that clinician led discussions about intimacy/sexuality were helpful (25).
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While many assessments paid explicit attention to patient abuse, issues pertaining to patient neglect and financial abuse were frequently missing. It is possible that social workers are screening for neglect and financial abuse and their associated risk factors as part of the
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evaluation of abuse – however, its absence on many assessments suggests that issues of neglect and financial exploitation may be getting overlooked. Although most assessments
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included items screening for patient suicide risk, depression, history of substance abuse, physical abuse, and caregiver bereavement risk, future research is needed to identify whether clinically-validated, standardized instruments are being used. Additionally, given the observed differences between unique assessments and the full sample, further research is needed exploring the differences between vendor-created assessments and agency-created
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assessments. As EMRs become commonplace in hospice care, they may provide a mechanism for dissemination and implementation for more comprehensive social work assessments. A fundamental aspect of social work assessment is to “start where the patient/family
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are.” However, most assessments did not include any content exploring basic patient/family awareness about the patient’s diagnosis, prognosis, or disease progression. A defining
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characteristic of hospice in the US is that patients must have a life expectancy of six months or less. Hospice social workers, in collaboration with other team members, must ensure that patients, or those making decisions on their behalf, are fully informed about the scope and limitations of care – including tactful disclosure that hospice is care for persons who are in the finals months or days of life – prior to enrolling them into hospice service. Furthermore, an important aspect of good hospice care involves preparing patients and families emotionally and intellectually for expected changes in health and function, including the types of care and interventions needed to accommodate and address these changes (26,27). Aligning
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patient/family beliefs with realistic expectations may, in turn, improve satisfaction with care and bereavement outcomes. The findings of our study should be considered within the context of its limitations. For
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example, our sample size was relatively small and, thus, parameter estimates may be imprecise. Due to the sampling frame, our study also excluded agencies that were not
Medicare-certified as of 2012. Thus newly established hospice organizations and all-volunteer
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organizations are not represented. Also, due to the stratified cluster sampling approach, the assessment practices of smaller states may be over-represented. However, because hospice
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practices are regulated at both the state and federal level, we wanted to ensure adequate variability of hospice agencies across states.
Within the hospice environment, the assessment of patient/family needs is a dynamic process. The psychosocial assessment form completed by the social worker is only one piece of this complex process. It is possible that during patient/family encounters, social workers are
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asking additional assessment questions that may not appear on the assessment form. Alternately, it is also possible that in practice, social workers are not asking every single question in a structured assessment. That said, this study is the first of its kind and paints a
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general picture of what assessment domains social workers are paying attention to across the country. Moreover, by summarizing assessment recommendations from leading practice
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organizations (as shown in Table 1), this study further contributes to the existing body of research by more clearly articulating the role of social work assessment in hospice. Our review strategy did not assign priority to any of the identified assessment domains. It
is possible that given the finite amount of time that hospice social workers have, that they are indeed focusing on the factors that they determine to be most important to their patients and families. Additionally, since we focused exclusively on the social work assessment, our methods did not take into account how these assessments complement the assessments of other members of the hospice team.
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Psychosocial Assessment Although we do not advocate for a “cookie cutter” approach to the assessment of psychosocial needs and circumstances, we believe that a structured assessment can help
social workers avoid overlooking important topics while providing them with evidence informed
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questions that can facilitate in-depth clinical discussions. Hospice social workers must consider the practical aspects of assessment, including time constraints, documentation burden, pressing patient/family needs and ensuring timeliness of triaged intervention. We found, for example, that
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assessment instruments used by agencies in our sample were generally lengthy, in terms of both number of items and number of pages. Indeed, paperwork burden in hospice has been
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identified as a potential impediment to the family-provider relationship and barrier to efficient practice. However, by using skip logic and other means of minimizing unnecessary questions, some electronic assessments may facilitate efficiency, while retaining comprehensiveness (12). In fact, previous work has linked use of EMR in hospice with greater attention to key quality of care domains (28,29). Additionally, structured and well-designed assessments yield more
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objective data and can be quicker to complete. We also believe it is essential that developers of hospice social work assessments – whether electronic or paper-based – should obtain input from experienced social workers with knowledge of the unique complexities of the hospice
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setting. Doing so may facilitate the comprehensiveness, ease of completion, and clinical relevance of the resulting assessment.
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Social work assessment informs the work of the entire hospice team, including careplanning efforts, and contributes to a foundation for understanding the whole person within their unique environment and social context. As Otis-Green and colleagues argue: “In many environments, it will be the social worker who is able to provide the most comprehensive assessment of patient concerns” (30). If social workers omit clinically relevant data, this gap in information may undermine the interdisciplinary team’s understanding of the total patient/family needs and resources, while also limiting the team’s ability to provide high quality care. Our study suggests social work assessments indeed include essential content on patient/family needs,
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aspects, including patient pain; communication and health literacy issues; cultural preferences; concerns related to intimacy and sexuality; and patient neglect and financial abuse) are absent.
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Additional study is needed to understand how clinical assessments by other core hospice disciplines, such as nurses, chaplains and physicians, contribute to the patient’s full
comprehensive hospice assessment. Furthermore, research is also needed to better
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understand whether validated assessment instruments are being used by team members – and
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how assessment findings inform clinical decision-making and supportive care interventions.
DISCLOSURES AND ACKNOWLEDGMENTS The authors thank Cordt Kassner, PhD, of Hospice Analytics for supplying the list of hospice organizations. The efforts of Dr. Cagle were supported, in part, by the National Palliative Care Research Center [no grant number]. The authors also extend their appreciation to Jacklyn
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Parker, Rick Steele, Kaila Williams, Nahid Koohkanrizi, Kathleen Bulson, and Lark Claassen for their assistance contacting hospice agencies as well as the hospice professionals who
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contributed to the project. The authors declare no conflicts of interest.
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10. Christ GH, Sormanti M. Advancing social work practice in end-of-life care. Soc Work Health Care 2000;30:81-99. 11. Gwyther LP, Altilio T, Blacker S, Christ GH, Csikai EL, Hooyman N, Kramer B, Linton JM, Raymer M, Howe J. Social work competencies in palliative and end-of-life care. J Soc Work End-of-Life Palliat Care 2005;1:87-120. 12. Hansen AG, Martin E, Jones BL, Pomeroy EC. Social work assessment notes: A comprehensive outcomes-based hospice documentation system. Health Soc Work 2015, doi: 10.1093/hsw/hlv033. 13. Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, Herr K, Rotella JD, Casarett DJ. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses
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Psychosocial Assessment Association. J Pain Symptom Manage 2015;49:773-781. doi: 10.1016/j.jpainsymman.2015.01.012 14. Hospice Analytics. Hospice Analytics. Available from: http://www.nationalhospiceanalytics.com/ Accessed June 1, 2016.
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15. Kulys R, Davis MA. Nurses and social workers: Rivals in the provision of social services? Health Soc Work 1987;12:101-12. 16. Cassileth BR. Hospice and the biopsychosocial model of health care: Will hospice be the mechanism for change in the American health care system?. Am J Hospice Palliat Med 1984;1:18-20.
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17. National Association of Social Workers. Social Workers in Hospice and Palliative Care: Occupational Profile. 2010. Available from: http://workforce.socialworkers.org/studies/profiles/Hospice.pdf Accessed June 1, 2016.
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18. Engel GL. The need for a new medical model: A challenge for biomedicine. Sci 1977;196:129-136. 19. Parker Oliver D, Wittenberg-Lyles E, Washington K, Sehrawat S. Social work role in pain management with hospice caregivers: A national survey. J Soc Work End-of-Life Palliat Care 2009;5:61-73. 20. Cagle JG, Altilio T. In: Altilio T, Otis-Green S, eds. Oxford textbook of palliative social work. New York: Oxford University Press, 2011:271-286.
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21. Parker Oliver D, Wittenberg-Lyles E, Demiris G, Washington K, Porock D, Day M. Barriers to pain management: Caregiver perceptions and pain talk by hospice interdisciplinary teams. J Pain Symptom Manage 2008;36:374-382.
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22. Mehta A, Chan LS. Understanding of the concept of “total pain”: A prerequisite for pain control. J Hospice Palliat Nurs 2008;10:26-32.
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23. Alper J, ed. Health literacy and palliative care: Workshop summary. Washington DC: National Academies Press; 2016. http://www.nationalacademies.org/hmd/Reports/2016/HealthLiteracy-and-Palliative-Care-Workshop-Summary.aspx 24. Cagle JG, Williams K. Communication education for social workers. In Wittenberg-Lyles E, Ferrell B, Goldsmith J, Smith T, Ragan S, Glajchen M, Handzo G, eds. Textbook of palliative care communication. New York: Oxford University Press, 2016:375-389. 25. Kelemen AM, Cagle JG, Groninger H. Screening for intimacy concerns in a palliative care population: Findings from a pilot study. J Palliat Med; in press. doi: 10.1089/jpm.2016.0092 26. Ivanko B. A call to action: Helping hospice social workers embrace evidence-based practice – Improving hospice documentation. Home Health Care Now 2011;29:612-620. 27. Cagle JG, Kovacs PJ. Education: A complex and empowering intervention at the end of life. Health Soc Work 2009;34:17-27. doi: 10.1093/hsw/34.1.17.
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28. Cagle JG, Durham DD, Rokoske FS, Schenck AP, Spence C, Hanson LC. Use of electronic documentation for quality improvement in hospice care. Am J Med Qual 2012;27:282-290. doi: 10.1177/1062860611425103.
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29. Lamba S, Berlin A, Goett R, Ponce CB, Holland B, Walther S, Group AR. Assessing emotional suffering in palliative care: Use of a structured note template to improve documentation. J Pain Symptom Manage 2016;52:1-7. doi: 10.1016/j.jpainsymman.2016.01.017
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30. Otis-Green S, Sidhu RK, Del Farraro C, Ferrell B. Integrating social work into palliative care for lung cancer patients and families: A multi-disciplinary approach. J Psychosoc Oncol 2014;32:431-446. doi: 10.1080/07347332.2014.917140
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Table 1. Recommended Hospice Social Work Assessment Domains By Organization Organization Selected Sub-Domains NASW NHPCOa SWPI NHPCOb Diagnosis, symptoms, cognitive status, X X X X ADLs, IADLs Patient Emotional & Mental Health Mental illness, suicide risk, substance X X X X use/abuse, denial, depression, anxiety Knowledge of Illness & Preferences Awareness of diagnosis/prognosis/disease X X X trajectory, preferences for care Family Coping & Bereavement Risk Coping resources, past losses, X X X X bereavement risk, depression, denial Family/Caregiver Health & Functional Status Current health status, cognitive status, X X mobility/functional capability Family & Relationship Issues Family structure, family conflict, X X X X intimacy/sexuality Culture, Spirituality & Religiosity Religiosity/spirituality, cultural X X X X values/beliefs, preferred customs/rituals Communication & Literacy Issues Communication/decision-making style, X X preferred language, health literacy Resource Needs & Safety Financial resources, transportation needs, X X X X abuse/exploitation/neglect An “X” indicates the assessment domain is explicitly identified by the organization in their suggested areas for hospice social work assessment. ADLs = Activities of Daily Living; IADLs = Instrumental Activities of Daily Living; NASW = National Association of Social Workers guidelines based on Bailey, 2004; NHPCOa = National Hospice and Palliative Care Organization publication Guidelines for Hospice Social Work; SWPI = Social b Work Policy Institute, 2010; NHPCO = National Hospice and Palliative Care Organization guidelines for the Social Work Assessment Tool (SWAT)
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Recommended Assessment Domains Patient Physical & Functional Status
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Table 2. Characteristics of Participating Hospice Agencies (N=105)
42 (40.0%) 63 (60.0%)
Average Daily Patient Census 25 or less 26-100 101-350 351 or more
38 (36.5%) 40 (38.5%) 22 (21.2%) 4 (3.8%)
Geographic Region Midwest Northeast West South
29 (27.6%) 17 (16.2%) 27 (25.7%) 32 (30.5%)
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*Includes government and all-volunteer agencies
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Profit Status For-profit Non-profit*
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68 (64.8%) 19 (18.1%) 18 (17.1%)
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N (%)
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Agency Characteristics Hospice Agency Type Freestanding Hospital-based Home health agency-based
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Table 3. Content of Hospice Psychosocial Assessments
Is the Assessment Topic Included? Full Sample Unique Assessments (N=105) (N=76)
Patient Emotional & Mental Health History of mental illness Risk of suicide History of substance abuse Denial Depression Anxiety
% Unclear
% No
% Yes
% Unclear
% No
34.3 47.6 37.1 28.6 29.5 21.0 56.2 46.7 34.3 25.7
5.7 3.8 1.9 1.0 1.0 1.9 3.8 1.0 0 0
60.0 48.6 61.0 70.5 69.5 77.1 40.0 52.4 65.7 74.3
38.2 47.4 23.7 17.1 19.7 7.9 50.0 36.8 25.0 14.5
3.9 3.9 2.6 1.3 1.3 2.6 5.3 1.3 0 0
57.9 48.7 73.7 81.6 78.9 89.5 44.7 61.8 75.0 85.5
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Knowledge of Illness & Preferences Awareness of diagnosis Awareness of prognosis Awareness of disease trajectory Preferences for treatment/care Presence/need for advance directives Family Coping & Bereavement Risk
22.9 20.0 11.4 35.2 75.2
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4.8 0 0 5.7 9.5 11.4
40.0 41.0 33.3 47.6 17.1 14.3
42.1 48.7 59.2 35.5 63.2 64.5
6.6 0 0 6.6 13.2 15.8
51.3 51.3 40.8 57.9 23.7 19.7
1.9 2.9 1.9 1.9 1.9
75.2 77.1 86.7 62.9 22.9
19.7 17.1 7.9 25.0 69.7
2.6 3.9 2.6 1.3 2.6
77.6 78.9 89.5 73.7 30.3
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55.2 59.0 66.7 46.7 73.3 74.3
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% Yes
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Assessment Domains Patient Physical & Functional Status Primary diagnosis Pain Agitation Shortness of breath Fatigue Delirium Cognitive status Functional status ADLs IADLs
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68.6 27.6 23.8 21.9 17.1 45.7 68.6 59.0
25.0 60.5 63.2 60.5 71.1 40.8 18.4 26.3
Family/Caregiver Health & Functional Status Current health status Cognitive status Mobility/functional capability
51.4 41.0 46.7
1.0 1.9 1.9
47.6 57.1 52.4
40.8 44.7 36.8
Family & Relationship Issues Family structure Family conflict Changes in intimacy Issues related to sexuality
74.3 64.8 31.4 8.6
1.9 4.8 1.0 1.9
23.8 30.5 67.6 89.5
Culture & Religiosity Religiosity/spirituality Cultural values/beliefs Preferred customs/rituals
74.3 29.5 25.7
Communication & Literacy Issues Communication style Decision-making style Preferred language Health literacy
19.0 3.8 18.1 5.7
73.3 27.6 61.0 16.2 34.3
68.4 35.5 32.9 26.6 22.4 55.3 80.3 72.4
57.9 52.6 61.8
65.8 59.2 19.7 7.9
2.6 3.9 1.3 2.6
31.6 36.8 78.9 89.5
22.9 69.5 67.6
68.4 27.6 15.8
3.9 1.3 5.3
27.6 71.1 78.9
0 1.0 0 1.9
81.0 95.2 81.9 92.4
21.1 2.6 19.7 3.9
0 1.3 0 2.6
78.9 96.1 80.3 93.4
7.6 0 1.9 25.7 20.0
19.0 72.4 37.1 58.1 45.7
64.5 15.8 57.9 18.4 25.0
9.2 0 2.6 30.3 23.7
26.3 84.2 39.5 51.3 51.3
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1.3 2.6 1.3
2.9 1.0 6.7
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Resource Needs & Safety Financial resources Transportation needs Physical abuse Psychological abuse Financial abuse/exploitation
6.6 3.9 3.9 11.8 6.6 3.9 1.3 1.3
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7.6 2.9 2.9 8.6 4.8 3.8 1.0 1.0
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23.8 69.5 73.3 69.5 78.1 50.5 30.5 40.0
Coping styles Coping resources History of deaths/losses Bereavement risk Depression Denial Anticipatory grief Family/caregiver guilt
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1.9
63.8
26.3
2.6
71.1
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34.3 Neglect ADLs – Activities of Daily Living IADLS – Instrumental Activities of Daily Living Percentages may not add up to 100% due to rounding
S0885-3924(16)30366-9
DOI:
10.1016/j.jpainsymman.2016.08.016
Reference:
JPS 9236
To appear in:
Journal of Pain and Symptom Management
Received Date: 6 June 2016 Revised Date:
1 August 2016
Accepted Date: 4 August 2016
Please cite this article as: Cagle JG, Osteen P, Sacco P, Jacobson Frey J, Psychosocial Assessment by Hospice Social Workers: A Content Review of Instruments from a National Sample, Journal of Pain and Symptom Management (2016), doi: 10.1016/j.jpainsymman.2016.08.016. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Psychosocial Assessment RUNNING HEAD: Psychosocial Assessment
Original Article
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16-00355R1
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Psychosocial Assessment by Hospice Social Workers:
A Content Review of Instruments from a National Sample
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John G. Cagle, PhD1 Philip Osteen, PhD2 Paul Sacco, PhD1
1
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Jodi Jacobson Frey, PhD1
University of Maryland, Baltimore, Maryland, USA Florida State University, Tallahassee, Florida, USA
2
Address correspondence to: John G. Cagle, Ph.D., M.S.W., Assistant Professor, University of Maryland, Baltimore, School of Social Work, 525 West Redwood Street, 3W13, Baltimore, MD 21201; e-mail: [email protected] Number of tables: 3 Number of figures: 0 Number of references: 30
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Psychosocial Assessment Word count: 4,252 ABSTRACT
CONTEXT. Hospice social workers are charged with completing a psychosocial assessment for
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every new enrollee. This assessment is part of the patient’s comprehensive assessment and serves to inform the plan of care and key quality indicators. OBJECTIVES. To review the
content of hospice social work assessments because little is known about what assessment topics are included or overlooked. METHODS. Using a clustered random sample from all 50
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states, we contacted hospice agencies and requested a blank copy of the social work
assessment completed at intake. We then systematically reviewed the content of these
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assessments to determine which domains were included and which were omitted. A total of 105 hospice agencies participated (response rate 42%). Among the assessments provided, 76 (72%) were unique assessments. RESULTS. Participating hospices were largely freestanding (65%), non-profit (60%), and either medium (39%) or small (37%) in terms of average daily census. Over 60% of the sample assessments included content on: financial resources; family
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structure; coping resources; bereavement risk; past losses; caregiver depression; religiosity/spirituality; patient anxiety, patient depression; and advance directives. However, most assessments did not include items evaluating: patient physical/functional status;
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preferences for treatment/care; awareness of diagnosis, prognosis, or disease progression; communication and literacy issues; changes in relationship intimacy/sexuality; and cultural
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values, beliefs and customs. CONCLUSION. Hospice social workers should consider modifying their assessment practices to include a comprehensive array of assessment topics pertinent to patients and families. An accurate, comprehensive assessment that contributes to a holistic, interdisciplinary approach will likely lead to better clinical outcomes.
KEY WORDS: hospice; palliative care; psychosocial assessment; screening; end-of-life; social work Accepted for publication: August 4, 2016.
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INTRODUCTION
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Hospice provides care to nearly 1.6 million dying patients annually and 1.2 million US deaths occur while under the care of hospice (1). According to Medicare Hospice Conditions of Participation, hospice agencies are required to complete a comprehensive assessment for
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every newly enrolled hospice patient and their family (2). The psychosocial assessment conducted by social workers is an instrumental part of the full interdisciplinary hospice
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assessment, which must be completed within five days of patient enrollment (3). Thus, when new patients enroll in hospice, social workers are charged with conducting a thorough assessment of patient/family needs, risks, resources and coping. Information from these assessments is used to guide interventions, visit frequencies, care planning and referrals. However, little is known about the content, comprehensiveness and format of these assessment
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tools. If important psychosocial domains are missing from the initial social work assessment, then patient/family needs and key risk factors might be overlooked. To address this gap in knowledge, the current study evaluated the content of hospice psychosocial assessments being
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used in the US.
Systematic approaches to identifying and addressing psychosocial issues in hospice
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have demonstrated beneficial outcomes for both patients and families. For example, in a hospice clinical trial, McMillian et al. found that systematic assessment of patient depression led to decreased depression (4). In another randomized trial, the assessment of pain-management related worries expressed by hospice families, coupled with brief, tailored education, was found to reduce caregiver concerns, improve their knowledge and lower patient pain (5). Social work participation at the hospice intake visit, during which the initial psychosocial assessment is typically completed, is also linked with positive outcomes such as better team functioning and
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Psychosocial Assessment increased patient/family satisfaction (6). Thus, a better understanding of the assessment practices of hospice social workers may have direct implications for quality of care. Hospice is a patient/family-centered interdisciplinary model of end-of-life care that
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focuses on maximizing patient quality of life (1,2). Dying patients who enroll in hospice and their families have a wide variety of psychosocial support needs ranging from emotional care to
decision-making about long-term care options. Currently there is no consensus about which
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patient and family domains should be included in psychosocial assessments used by hospice social workers; nor is there agreement about the ideal format, structure or administration of the
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assessment. However, several scholars and professional and advocacy organizations have proposed a number of important focus areas for assessment. As summarized in Table 1, National Hospice and Palliative Care Organization (NHPCO) (1,7), the National Association of Social Workers (NASW) (8), and Social Work Policy Institute (SWPI) (9) have identified assessment domains that generally fall into nine categories. These categories are also reflected
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in recommendations by scholars in the fields of hospice and palliative care social work (10-12) as well as the Measuring What Matters project (13). At present, there is a notable absence of studies describing psychosocial assessments
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used by hospice social workers on a national scale. Given that the social work assessment is a critical component of the comprehensive hospice assessment, and the systematic assessment
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of psychosocial domains is linked to key hospice outcomes and quality of care domains, this information is vital to move the field forward. With this in mind, the purpose of this study was to describe and critically review the content and comprehensiveness of psychosocial assessments used by hospice social workers using a nationwide sample of intake assessments provided by hospice agencies. METHOD Design. Using a clustered random sample of all Medicare certified hospices in the US, we contacted a subset of hospices from all 50 states. Initial contact was established by phone
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during a three-month period in winter 2013-2014. Once contact was established our study team provided general information about the study and then requested a blank copy of the psychosocial assessment used by staff social workers to evaluate the needs of newly enrolled
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patients and families. All psychosocial assessments were systematically reviewed using a structured content review instrument developed by the study team to elicit data on format,
length and content. All study procedures were reviewed and approved by the University of
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Maryland, Baltimore, Institutional Review Board.
Sample. The sample was limited to Medicare certified hospices identified in the 2012
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Medicare Provider of Service File with beneficiary information added from the 2012 Medicare 100% Hospice Standard Analytic File, which includes an estimated 90% of all US hospice organizations (14). Using this list we randomly selected five hospice agencies from each state to contact and request a blank copy of the psychosocial intake assessment used by the social worker(s). Because hospices are regulated at the state as well as Federal level, we established
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this sampling approach to ensure that a wide variety of states would be represented. Proportional representation by state was not feasible due to budgetary limitations. Hospices had to be current providers of hospice services with an active patient caseload
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to be included in the study. Thus, entities such as non-hospice palliative care agencies and state-level advocacy organizations were excluded from the sample. Prison and pediatric
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hospices were also excluded as these agencies are population-specific and the psychosocial needs of their patients differ substantially from the general populations of hospice users. If an agency’s contact information was invalid, we attempted to find the correct contact
information using a general internet search and “find a hospice agency” search tools provided by NHPCO and the Hospice Foundation of America. The agency was determined to be inactive if corrected contact information could not be located. Defunct or ineligible agencies were replaced in the sample using a random process. One state only had three hospice agencies providing care within its borders, leaving a final contact list of 248 agencies for all 50 states ([49
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states x 5 agencies] + [1 state x 3 agencies] = 248 valid and eligible hospice agencies available for the total sampling frame). In a few cases hospice providers agreed to participate and provided descriptive data for
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the study but had reservations about providing our research team with blank versions of their psychosocial assessment. This was especially common when hospices were using a
standardized assessment from an outside electronic medical record (EMR) vendor (often due to
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concerns about sharing proprietary material, or technical difficulties related to producing
complete instruments for assessments that employ drop-down response fields or skip logic). In
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these circumstances, if a hospice provider disclosed which vendor supplied their psychosocial assessment and: (a.) our study team could verify that the version of the assessment was indeed standardized (i.e., not tailored to the specific agency); and (b.) we already had a blank copy of the psychosocial assessment instrument from that particular vendor in our research database – then we considered these hospice agencies to have participated by extrapolation. In the final
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sample 9 (8.6%) agencies participated by extrapolation. These nine agencies were using assessments from four different vendors.
Because some assessments being used by different hospices were the exact same
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instrument, we eliminated duplicate assessments to create a subsample of unique instruments. In total, 76 assessments, 72% of the full sample, were unique. Different versions of
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assessments by the same vendor were considered unique. Results of our content review are reported for the full sample as well as by unique assessments. Content Review Instrument. Using a compilation of guidelines and recommendations
from NASW, NHPCO, SWPI and the scholarly literature (Table 1) (1,7-13), our research team developed a structured assessment tool with which to evaluate the content, structure and comprehensiveness of hospice psychosocial assessments. The content review instrument included descriptive data about the agency (e.g., size, tax status) as well as the psychosocial
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Psychosocial Assessment assessment (e.g., format, vender, length) and key assessment domains for hospice patients and families. Three members of the research team evaluated psychosocial assessments using the
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structured content measure, and each instrument was reviewed by at least two different reviewers. Reviewers recorded whether a given sub-topic was, or was not, included in each unique psychosocial assessment. To ensure consistency among reviewers, a sample of 10
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different assessments (selected for variability of vendor and format) were separately coded by all reviewers. Coding discrepancies were resolved by group discussion. Reviewers were
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instructed to bring any vague or otherwise ambiguous content review decisions to the entire research team for resolution. In some cases, our review team was unable to definitively determine whether a specific topic was clearly included in the assessment. In these instances, a determination of “unclear” was made. During this preliminary work, the content review instrument was also tested and refined to improve clarity and comprehensiveness.
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Analysis. Sample characteristics (M and SD for continuous variables; frequency and percent for categorical variables) are reported to describe participating hospice agencies. Univariate statistics were also used to describe the features of the psychosocial assessments
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provided by agencies within the sample. To compare results of the full sample of assessments with the sample of unique assessments, differences in the percentage of topics included were
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calculated [(% “Yes” topic included in the full sample) - (% “Yes” topic included in the unique sample)], including the mean difference (and SD) across all assessment topics. A total of 105 hospice agencies from 48 states provided a copy of their psychosocial
assessment for review (response rate 42%). To estimate the impact of non-response bias, we pre-tested for differences between agencies that participated (the 105 agencies who provided our research team with a blank psychosocial assessment for review) versus those that did not (n=143). We used chi-square tests to examine differences in participation based on agency type
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and profit status. Student’s t-test was employed to explore differences in hospice size based on two variables: the number of patients served annually and average daily census. RESULTS
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As shown in Table 2, the majority (65%) of the sample consisted of freestanding hospice agencies; and most hospices (60%) were non-profit. The majority of hospice providers were either small (average daily census of <26; 37%) or medium sized (average daily census of 26-
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100; 39%). The sample was geographically dispersed across the four census regions ranging from 16% in the Northeast region to 31% from the South. In our assessment of non-response,
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none of the tests exploring differences based on agency participation were statistically significant at α=.05 (agency type, p=.62; profit status, p=.27; number of patients served annually, p=.06; and average daily census p=.19).
More than two-thirds (68.6%) of the assessments reviewed came from electronic formats (31.4% were paper-based). Assessments were generally lengthy, with 60% consisting of >60
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items (61-75 items, 25%; 75+ items, 35%) and 17 pages long on average (SD = 21; for electronic assessments 1 full screen = 1 page). Prominent assessment vendors included Allscripts, Briggs-MedPass, Cerner, Consolo, Homecare Homebase, McKesson, Mumms, and
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Suncoast (frequencies not reported to mask proprietary attributes). Full Sample. As reported in Table 3, there was substantial variation among
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assessments' inclusion of sub-domain topics, both within and across the nine identified assessment domains. Within the Patient Physical and Functional Status domain, the subdomain receiving the lowest amount of attention was delirium, which was included in less than a quarter (21%) of assessments in the full sample. Patient cognitive status received the greatest amount of attention, and was included in 56% of assessments. Notably, nearly half of assessments (49%) did not have items evaluating patient pain. More assessments included items for Patient Emotional and Mental Health than for other domains. Content on patient denial was included on less than half (48%) of assessments in the
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Psychosocial Assessment sample, but other items such as patient anxiety (74%) and depression (73%) were present in a larger proportion of assessments. For depression, determinations of “unclear” included, for
example, generic open-ended items inquiring about “patient mood/affect.” Within the Knowledge
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of Illness and Preferences domain, three quarters of assessments had content on the presence/need for advanced directives (75%) but far fewer included items on awareness of diagnosis (20%), prognosis (20%), trajectory of illness (11%) or preferences for treatment/care
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(35%).
Within the Family Coping and Bereavement Risk domain, few assessments had content
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exploring patient/family coping styles (24%), while other sub-domains were more frequently included such as coping resources (70%), bereavement risk (70%), and depression (78%). Under the domain of Family/Caregiver Health & Functional Status, the sub-domain receiving the greatest attention based on assessment content was family/caregiver current health status, which was included on just over half of assessments (51%), while family/caregiver cognitive
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status received the least attention (41%) within the domain.
In terms of Family and Relationship Issues, the majority of assessments covered subdomains of family structure (74%) and family conflict (65%), but not issues of intimacy (31%) or
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sexuality (9%). In the Culture and Religiosity domain, less than one-third of assessments included content exploring cultural values and beliefs (30%) or items asking about preferred
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customs/rituals (26%). Most unique assessments, however, did include items covering patient/family religiosity/spirituality (74%). The domain most frequently absent from assessments was Communication and Literacy
Issues. Only 18% of assessments included items regarding patient’s preferred language; 6% of assessments included content regarding health literacy. Similarly, only 19% of assessments had items on patient/family communication style, and 95% did not address decision-making style. In terms of Resource Needs & Safety, the most prevalent sub-domain was financial resources,
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Psychosocial Assessment which was included in just under three quarters (73%) of assessments, while psychological abuse received the least attention within this domain (included in only 16%). Unique Assessments. Findings in the sample of unique assessments were generally
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similar to those in the full sample. However, unique assessments tended to have a lower proportion of content on specific sub-domain topics relative to the full sample. On average, unique assessments included 6.9% (SD=5) fewer sub-domain topics. The largest discrepancies
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were observed on sub-domains of family caregiver guilt (a difference of -13.7%; included in 40% of assessments in the full sample, but only 26.3% of the unique sample), patient agitation (a
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difference of -13.4%; included in 37.1% of the full sample, 23.7% of the unique sample), patient delirium (a difference of -13.1%; included in 21% of the full sample, 7.9% of the unique sample), and patient history of mental illness (a difference of -13.1%; included in 55.2% of the full sample, 42.1% of the unique sample) – all of which had a higher proportion of topic content included in the full sample. Taken together, this indicates that assessments used by multiple
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hospice agencies tend to cover a more comprehensive array of topics compared to assessments used by only one agency.
DISCUSSION
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Our study is the first to provide a descriptive overview of psychosocial assessments being used by hospice social workers using a national sample. Based on our data, hospice
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social work assessments indeed include content on important topics such as: financial resources; family structure; coping resources; bereavement risk; history of losses; family caregiver depression; religiosity/spirituality; patient anxiety and depression; and presence of, or need for, advance directives (all included in >60% of assessments in the sample). However, we also found that many of the assessments being used by social workers currently omit critical psychosocial topics – and, therefore, are lacking and not truly comprehensive. Most assessments in our sample, for example, did not include basic items evaluating: patient physical or functional status – including patient pain; patient preferences for treatment/care;
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Psychosocial Assessment patient/family awareness about diagnosis, prognosis, or disease progression; communication and literacy issues; changes in relationship intimacy/sexuality; and cultural values, beliefs and
customs. If social workers are neglecting to inquire about these important domains during their
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clinical interactions, then key patient needs may be missed and patient/family care plans may be incomplete.
Many aspects of patient physical and functional status were not evaluated in hospice
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social work assessments. With the exception of patient pain and cognitive status, the remaining topics related to physical and functional status (i.e., primary diagnosis, agitation, dyspnea,
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fatigue, delirium, functional status, and activities of daily living) were absent in the majority of assessments. This may be due to narrow beliefs about job roles; more specifically, beliefs that physical domains should be evaluated by other team members, such as a nurse or physician, and not by social workers (15). However, without such information social workers will not have a complete picture of the entire patient/family context. With a thorough understanding of the
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patient’s physical/functional situation, social workers can then coordinate with other team members to address distressing physical symptoms, maximize patient independence, and work with informal caregivers to ensure that they are prepared to meet the physical and functional
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needs of the patient. Furthermore, capturing patient medical and functional data is consistent with the biopsychosocial approach embraced by both the hospice philosophy of care (16) as
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well as the social work discipline (17,18). The assessment and treatment of pain and other distressing symptoms is a core aspect
of hospice care. Furthermore, social work scholars in hospice and palliative care have argued that the assessment of patient pain is an ethical imperative for social work clinicians (19,20). Unfortunately, based on our review, nearly half of hospice social work assessments may be neglecting this critical domain. Perhaps social workers are also deferring this responsibility to other team members. However, the social work perspective is important to include in the evaluation of patient pain in hospice. This is because there are numerous psychosocial aspects
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of pain and pain management (5,21,22), in addition to the potential for pain to exacerbate other psychological problems (20). We also found that assessments generally lacked items evaluating communication
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patterns, language and health literacy issues. In particular, assessments did not include prompts about the patient/family’s communication style, decision-making style, preferred
language and health literacy. These assessment topics can help social workers identify the
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need for translation services, education/learning needs, and optimal ways to communicate difficult information and facilitate decision-making (e.g., goals of care conversations, completion
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of advanced directives). Indeed, this is a critical assessment domain; one central to maintaining a person-centered care approach, and the findings of which are essential information for all members of the interdisciplinary team to know. The National Academy of Medicine (formerly the Institute of Medicine) recently published a summary of their workshop on communication and health literacy in palliative care, which emphasized the centrality of the tactful and accurate
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exchange of clinical information, using plain language with patients and families, as well as the need to help them navigate complex care-related decisions (23). Thus, assessment information about patient/family communication needs and preferences are paramount and directly inform
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hospice care processes. Without such insight into communication needs and literacy issues, the effective transfer of clinical communication and, ultimately, the quality of care will likely suffer
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(24).
Assessment items pertaining to patient/family cultural beliefs and rituals were notably
absent from most (>2/3) assessments in our sample. Patient/family responses to illness, death and loss are culturally informed and, thus, social workers should be aware of the unique cultural needs and preferences of each family. Over two thirds of assessments did not include items exploring issues related to intimacy or sexuality. Intimate, loving relationships are critical components of patient quality of life, and related patient concerns should be tactfully, but directly, and addressed by the social worker and hospice team. A recent study of palliative care
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Psychosocial Assessment patients found that 71% of those at the end of life (survival of 3 months or less) reported that
their illness had either significantly or moderately impacted their intimacy – and 100% indicated that clinician led discussions about intimacy/sexuality were helpful (25).
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While many assessments paid explicit attention to patient abuse, issues pertaining to patient neglect and financial abuse were frequently missing. It is possible that social workers are screening for neglect and financial abuse and their associated risk factors as part of the
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evaluation of abuse – however, its absence on many assessments suggests that issues of neglect and financial exploitation may be getting overlooked. Although most assessments
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included items screening for patient suicide risk, depression, history of substance abuse, physical abuse, and caregiver bereavement risk, future research is needed to identify whether clinically-validated, standardized instruments are being used. Additionally, given the observed differences between unique assessments and the full sample, further research is needed exploring the differences between vendor-created assessments and agency-created
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assessments. As EMRs become commonplace in hospice care, they may provide a mechanism for dissemination and implementation for more comprehensive social work assessments. A fundamental aspect of social work assessment is to “start where the patient/family
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are.” However, most assessments did not include any content exploring basic patient/family awareness about the patient’s diagnosis, prognosis, or disease progression. A defining
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characteristic of hospice in the US is that patients must have a life expectancy of six months or less. Hospice social workers, in collaboration with other team members, must ensure that patients, or those making decisions on their behalf, are fully informed about the scope and limitations of care – including tactful disclosure that hospice is care for persons who are in the finals months or days of life – prior to enrolling them into hospice service. Furthermore, an important aspect of good hospice care involves preparing patients and families emotionally and intellectually for expected changes in health and function, including the types of care and interventions needed to accommodate and address these changes (26,27). Aligning
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patient/family beliefs with realistic expectations may, in turn, improve satisfaction with care and bereavement outcomes. The findings of our study should be considered within the context of its limitations. For
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example, our sample size was relatively small and, thus, parameter estimates may be imprecise. Due to the sampling frame, our study also excluded agencies that were not
Medicare-certified as of 2012. Thus newly established hospice organizations and all-volunteer
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organizations are not represented. Also, due to the stratified cluster sampling approach, the assessment practices of smaller states may be over-represented. However, because hospice
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practices are regulated at both the state and federal level, we wanted to ensure adequate variability of hospice agencies across states.
Within the hospice environment, the assessment of patient/family needs is a dynamic process. The psychosocial assessment form completed by the social worker is only one piece of this complex process. It is possible that during patient/family encounters, social workers are
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asking additional assessment questions that may not appear on the assessment form. Alternately, it is also possible that in practice, social workers are not asking every single question in a structured assessment. That said, this study is the first of its kind and paints a
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general picture of what assessment domains social workers are paying attention to across the country. Moreover, by summarizing assessment recommendations from leading practice
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organizations (as shown in Table 1), this study further contributes to the existing body of research by more clearly articulating the role of social work assessment in hospice. Our review strategy did not assign priority to any of the identified assessment domains. It
is possible that given the finite amount of time that hospice social workers have, that they are indeed focusing on the factors that they determine to be most important to their patients and families. Additionally, since we focused exclusively on the social work assessment, our methods did not take into account how these assessments complement the assessments of other members of the hospice team.
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Psychosocial Assessment Although we do not advocate for a “cookie cutter” approach to the assessment of psychosocial needs and circumstances, we believe that a structured assessment can help
social workers avoid overlooking important topics while providing them with evidence informed
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questions that can facilitate in-depth clinical discussions. Hospice social workers must consider the practical aspects of assessment, including time constraints, documentation burden, pressing patient/family needs and ensuring timeliness of triaged intervention. We found, for example, that
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assessment instruments used by agencies in our sample were generally lengthy, in terms of both number of items and number of pages. Indeed, paperwork burden in hospice has been
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identified as a potential impediment to the family-provider relationship and barrier to efficient practice. However, by using skip logic and other means of minimizing unnecessary questions, some electronic assessments may facilitate efficiency, while retaining comprehensiveness (12). In fact, previous work has linked use of EMR in hospice with greater attention to key quality of care domains (28,29). Additionally, structured and well-designed assessments yield more
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objective data and can be quicker to complete. We also believe it is essential that developers of hospice social work assessments – whether electronic or paper-based – should obtain input from experienced social workers with knowledge of the unique complexities of the hospice
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setting. Doing so may facilitate the comprehensiveness, ease of completion, and clinical relevance of the resulting assessment.
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Social work assessment informs the work of the entire hospice team, including careplanning efforts, and contributes to a foundation for understanding the whole person within their unique environment and social context. As Otis-Green and colleagues argue: “In many environments, it will be the social worker who is able to provide the most comprehensive assessment of patient concerns” (30). If social workers omit clinically relevant data, this gap in information may undermine the interdisciplinary team’s understanding of the total patient/family needs and resources, while also limiting the team’s ability to provide high quality care. Our study suggests social work assessments indeed include essential content on patient/family needs,
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aspects, including patient pain; communication and health literacy issues; cultural preferences; concerns related to intimacy and sexuality; and patient neglect and financial abuse) are absent.
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Additional study is needed to understand how clinical assessments by other core hospice disciplines, such as nurses, chaplains and physicians, contribute to the patient’s full
comprehensive hospice assessment. Furthermore, research is also needed to better
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understand whether validated assessment instruments are being used by team members – and
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how assessment findings inform clinical decision-making and supportive care interventions.
DISCLOSURES AND ACKNOWLEDGMENTS The authors thank Cordt Kassner, PhD, of Hospice Analytics for supplying the list of hospice organizations. The efforts of Dr. Cagle were supported, in part, by the National Palliative Care Research Center [no grant number]. The authors also extend their appreciation to Jacklyn
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Parker, Rick Steele, Kaila Williams, Nahid Koohkanrizi, Kathleen Bulson, and Lark Claassen for their assistance contacting hospice agencies as well as the hospice professionals who
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contributed to the project. The authors declare no conflicts of interest.
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REFERENCES
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1. National Hospice and Palliative Care Organization. NHPCO’s Facts and Figures: Hospice Care in America. 2014. Available from: http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf 2. Centers for Medicare and Medicaid Services. Hospice Conditions of Participation Final Rule. 2008. Available from: http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf. Accessed April 24, 2013.
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3. National Hospice and Palliative Care Organization. Medicare Hospice Conditions of Participation: Social Work, nd. Available from: http://www.nhpco.org/sites/default/files/public/regulatory/Social_Work_tip_sheet.pdf
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4. McMillan SC, Small BJ, Haley WE. Improving hospice outcomes through systematic assessment: A clinical trial. Cancer Nurs 2011;34:89-97. doi: 10.1097/NCC.0b013e3181f70aee. 5. Cagle JG, Zimmerman S, Cohen L, Porter L, Hanson L, Reed D. EMPOWER: An intervention to address barriers to pain management in hospice. J Pain Symptom Manage 2015;49:1-12. doi: 10.1177/1062860611425103 6. Reese DJ, Raymer M. Relationships between social work involvement and hospice outcomes: Results of the National Hospice Social Work Survey. Soc Work 2004;49:415-422.
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7. Hay A, Johnson S. Fundamental skills and knowledge for hospice and palliative care social workers. In: Competency-based education for social workers. Arlington, VA: National Hospice and Palliative Care Organization, 2001;12-13. 8. Bailey G. NASW standards for social work practice in palliative and end of life care. Washington, DC: National Association of Social Workers, 2004.
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9. Social Work Policy Institute. Hospice social work: linking policy, practice, and research. Washington, DC: National Association of Social Workers.
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10. Christ GH, Sormanti M. Advancing social work practice in end-of-life care. Soc Work Health Care 2000;30:81-99. 11. Gwyther LP, Altilio T, Blacker S, Christ GH, Csikai EL, Hooyman N, Kramer B, Linton JM, Raymer M, Howe J. Social work competencies in palliative and end-of-life care. J Soc Work End-of-Life Palliat Care 2005;1:87-120. 12. Hansen AG, Martin E, Jones BL, Pomeroy EC. Social work assessment notes: A comprehensive outcomes-based hospice documentation system. Health Soc Work 2015, doi: 10.1093/hsw/hlv033. 13. Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, Herr K, Rotella JD, Casarett DJ. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses
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Psychosocial Assessment Association. J Pain Symptom Manage 2015;49:773-781. doi: 10.1016/j.jpainsymman.2015.01.012 14. Hospice Analytics. Hospice Analytics. Available from: http://www.nationalhospiceanalytics.com/ Accessed June 1, 2016.
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15. Kulys R, Davis MA. Nurses and social workers: Rivals in the provision of social services? Health Soc Work 1987;12:101-12. 16. Cassileth BR. Hospice and the biopsychosocial model of health care: Will hospice be the mechanism for change in the American health care system?. Am J Hospice Palliat Med 1984;1:18-20.
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17. National Association of Social Workers. Social Workers in Hospice and Palliative Care: Occupational Profile. 2010. Available from: http://workforce.socialworkers.org/studies/profiles/Hospice.pdf Accessed June 1, 2016.
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18. Engel GL. The need for a new medical model: A challenge for biomedicine. Sci 1977;196:129-136. 19. Parker Oliver D, Wittenberg-Lyles E, Washington K, Sehrawat S. Social work role in pain management with hospice caregivers: A national survey. J Soc Work End-of-Life Palliat Care 2009;5:61-73. 20. Cagle JG, Altilio T. In: Altilio T, Otis-Green S, eds. Oxford textbook of palliative social work. New York: Oxford University Press, 2011:271-286.
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21. Parker Oliver D, Wittenberg-Lyles E, Demiris G, Washington K, Porock D, Day M. Barriers to pain management: Caregiver perceptions and pain talk by hospice interdisciplinary teams. J Pain Symptom Manage 2008;36:374-382.
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22. Mehta A, Chan LS. Understanding of the concept of “total pain”: A prerequisite for pain control. J Hospice Palliat Nurs 2008;10:26-32.
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23. Alper J, ed. Health literacy and palliative care: Workshop summary. Washington DC: National Academies Press; 2016. http://www.nationalacademies.org/hmd/Reports/2016/HealthLiteracy-and-Palliative-Care-Workshop-Summary.aspx 24. Cagle JG, Williams K. Communication education for social workers. In Wittenberg-Lyles E, Ferrell B, Goldsmith J, Smith T, Ragan S, Glajchen M, Handzo G, eds. Textbook of palliative care communication. New York: Oxford University Press, 2016:375-389. 25. Kelemen AM, Cagle JG, Groninger H. Screening for intimacy concerns in a palliative care population: Findings from a pilot study. J Palliat Med; in press. doi: 10.1089/jpm.2016.0092 26. Ivanko B. A call to action: Helping hospice social workers embrace evidence-based practice – Improving hospice documentation. Home Health Care Now 2011;29:612-620. 27. Cagle JG, Kovacs PJ. Education: A complex and empowering intervention at the end of life. Health Soc Work 2009;34:17-27. doi: 10.1093/hsw/34.1.17.
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28. Cagle JG, Durham DD, Rokoske FS, Schenck AP, Spence C, Hanson LC. Use of electronic documentation for quality improvement in hospice care. Am J Med Qual 2012;27:282-290. doi: 10.1177/1062860611425103.
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29. Lamba S, Berlin A, Goett R, Ponce CB, Holland B, Walther S, Group AR. Assessing emotional suffering in palliative care: Use of a structured note template to improve documentation. J Pain Symptom Manage 2016;52:1-7. doi: 10.1016/j.jpainsymman.2016.01.017
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30. Otis-Green S, Sidhu RK, Del Farraro C, Ferrell B. Integrating social work into palliative care for lung cancer patients and families: A multi-disciplinary approach. J Psychosoc Oncol 2014;32:431-446. doi: 10.1080/07347332.2014.917140
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Table 1. Recommended Hospice Social Work Assessment Domains By Organization Organization Selected Sub-Domains NASW NHPCOa SWPI NHPCOb Diagnosis, symptoms, cognitive status, X X X X ADLs, IADLs Patient Emotional & Mental Health Mental illness, suicide risk, substance X X X X use/abuse, denial, depression, anxiety Knowledge of Illness & Preferences Awareness of diagnosis/prognosis/disease X X X trajectory, preferences for care Family Coping & Bereavement Risk Coping resources, past losses, X X X X bereavement risk, depression, denial Family/Caregiver Health & Functional Status Current health status, cognitive status, X X mobility/functional capability Family & Relationship Issues Family structure, family conflict, X X X X intimacy/sexuality Culture, Spirituality & Religiosity Religiosity/spirituality, cultural X X X X values/beliefs, preferred customs/rituals Communication & Literacy Issues Communication/decision-making style, X X preferred language, health literacy Resource Needs & Safety Financial resources, transportation needs, X X X X abuse/exploitation/neglect An “X” indicates the assessment domain is explicitly identified by the organization in their suggested areas for hospice social work assessment. ADLs = Activities of Daily Living; IADLs = Instrumental Activities of Daily Living; NASW = National Association of Social Workers guidelines based on Bailey, 2004; NHPCOa = National Hospice and Palliative Care Organization publication Guidelines for Hospice Social Work; SWPI = Social b Work Policy Institute, 2010; NHPCO = National Hospice and Palliative Care Organization guidelines for the Social Work Assessment Tool (SWAT)
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Recommended Assessment Domains Patient Physical & Functional Status
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Table 2. Characteristics of Participating Hospice Agencies (N=105)
42 (40.0%) 63 (60.0%)
Average Daily Patient Census 25 or less 26-100 101-350 351 or more
38 (36.5%) 40 (38.5%) 22 (21.2%) 4 (3.8%)
Geographic Region Midwest Northeast West South
29 (27.6%) 17 (16.2%) 27 (25.7%) 32 (30.5%)
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*Includes government and all-volunteer agencies
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Profit Status For-profit Non-profit*
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68 (64.8%) 19 (18.1%) 18 (17.1%)
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N (%)
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Agency Characteristics Hospice Agency Type Freestanding Hospital-based Home health agency-based
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Table 3. Content of Hospice Psychosocial Assessments
Is the Assessment Topic Included? Full Sample Unique Assessments (N=105) (N=76)
Patient Emotional & Mental Health History of mental illness Risk of suicide History of substance abuse Denial Depression Anxiety
% Unclear
% No
% Yes
% Unclear
% No
34.3 47.6 37.1 28.6 29.5 21.0 56.2 46.7 34.3 25.7
5.7 3.8 1.9 1.0 1.0 1.9 3.8 1.0 0 0
60.0 48.6 61.0 70.5 69.5 77.1 40.0 52.4 65.7 74.3
38.2 47.4 23.7 17.1 19.7 7.9 50.0 36.8 25.0 14.5
3.9 3.9 2.6 1.3 1.3 2.6 5.3 1.3 0 0
57.9 48.7 73.7 81.6 78.9 89.5 44.7 61.8 75.0 85.5
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Knowledge of Illness & Preferences Awareness of diagnosis Awareness of prognosis Awareness of disease trajectory Preferences for treatment/care Presence/need for advance directives Family Coping & Bereavement Risk
22.9 20.0 11.4 35.2 75.2
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4.8 0 0 5.7 9.5 11.4
40.0 41.0 33.3 47.6 17.1 14.3
42.1 48.7 59.2 35.5 63.2 64.5
6.6 0 0 6.6 13.2 15.8
51.3 51.3 40.8 57.9 23.7 19.7
1.9 2.9 1.9 1.9 1.9
75.2 77.1 86.7 62.9 22.9
19.7 17.1 7.9 25.0 69.7
2.6 3.9 2.6 1.3 2.6
77.6 78.9 89.5 73.7 30.3
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55.2 59.0 66.7 46.7 73.3 74.3
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% Yes
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Assessment Domains Patient Physical & Functional Status Primary diagnosis Pain Agitation Shortness of breath Fatigue Delirium Cognitive status Functional status ADLs IADLs
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68.6 27.6 23.8 21.9 17.1 45.7 68.6 59.0
25.0 60.5 63.2 60.5 71.1 40.8 18.4 26.3
Family/Caregiver Health & Functional Status Current health status Cognitive status Mobility/functional capability
51.4 41.0 46.7
1.0 1.9 1.9
47.6 57.1 52.4
40.8 44.7 36.8
Family & Relationship Issues Family structure Family conflict Changes in intimacy Issues related to sexuality
74.3 64.8 31.4 8.6
1.9 4.8 1.0 1.9
23.8 30.5 67.6 89.5
Culture & Religiosity Religiosity/spirituality Cultural values/beliefs Preferred customs/rituals
74.3 29.5 25.7
Communication & Literacy Issues Communication style Decision-making style Preferred language Health literacy
19.0 3.8 18.1 5.7
73.3 27.6 61.0 16.2 34.3
68.4 35.5 32.9 26.6 22.4 55.3 80.3 72.4
57.9 52.6 61.8
65.8 59.2 19.7 7.9
2.6 3.9 1.3 2.6
31.6 36.8 78.9 89.5
22.9 69.5 67.6
68.4 27.6 15.8
3.9 1.3 5.3
27.6 71.1 78.9
0 1.0 0 1.9
81.0 95.2 81.9 92.4
21.1 2.6 19.7 3.9
0 1.3 0 2.6
78.9 96.1 80.3 93.4
7.6 0 1.9 25.7 20.0
19.0 72.4 37.1 58.1 45.7
64.5 15.8 57.9 18.4 25.0
9.2 0 2.6 30.3 23.7
26.3 84.2 39.5 51.3 51.3
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1.3 2.6 1.3
2.9 1.0 6.7
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Resource Needs & Safety Financial resources Transportation needs Physical abuse Psychological abuse Financial abuse/exploitation
6.6 3.9 3.9 11.8 6.6 3.9 1.3 1.3
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7.6 2.9 2.9 8.6 4.8 3.8 1.0 1.0
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23.8 69.5 73.3 69.5 78.1 50.5 30.5 40.0
Coping styles Coping resources History of deaths/losses Bereavement risk Depression Denial Anticipatory grief Family/caregiver guilt
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1.9
63.8
26.3
2.6
71.1
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34.3 Neglect ADLs – Activities of Daily Living IADLS – Instrumental Activities of Daily Living Percentages may not add up to 100% due to rounding