Palliative care for case managers: Building capacity to extend community-based palliative care to underserved older adults.

Palliative care has demonstrated effectiveness in alleviating the biological, emotional, social, and spiritual symptoms that accompany serious illness, and improving quality of life for seriously ill individuals and their family members. Despite increasing availability, there are significant disparities in access to and utilization of palliative care, particularly among diverse, low-income, and community-dwelling older adults with chronic illness. Training frontline service providers is a novel approach to expanding access to palliative care among underserved elders. This article presents a process and outcome evaluation of a palliative care curriculum that was developed and piloted for geriatric case managers in a large urban area. We describe the background, planning, design, implementation, and preliminary outcomes associated with a pilot implementation of the curriculum. We conclude with implications for replicating efforts to enhance frontline providers' knowledge, skills, and self-efficacy in extending palliative care to communities that lack access to critical supports for their burdensome symptoms.

Investigating associations between pain and complicated grief symptoms in bereaved Japanese older adults.

Objectives: About 10% of those who lose a loved one in hospice or palliative care settings will experience a mental health condition characterized by severe, prolonged grief responses. Criteria for this condition have evolved; we refer to this condition as Complicated Grief (CG) because it is one of the more common names. While there are some indications of associations between CG and poor physical health, explorations of the association between CG and pain is limited. The main objective of this study was to explore whether pain levels are higher in those with CG than those without, using a large population-based samples of Japanese older adults.Method: The study analyzed data from the Japan HOspice and Palliative care Evaluation (J-HOPE) study, a cross sectional study conducted in 2008 that examined the experiences and outcomes among adults throughout Japan who had lost a loved one within a palliative department or hospice setting, via self-report survey. We examined a subsample sample of 324 individuals aged 50 and above who completed a measure of CG.Results: Family members with high pain group had statistically significantly higher CG symptoms than those with low pain group (M = 66.95 vs. M = 52.05), an association which remained when controlling for demographic and loss-related factors.Conclusion: We found preliminary evidence of an association between CG symptoms and pain, which should be explored in additional samples. Should this finding be replicated, the mechanism of this association could be explored and treatment could potentially address both CG and pain.

"We Take Care of People; What Happens to Us Afterwards?": Home Health Aides and Bereavement Care in Hospice.

After a hospice patient dies, hospice providers can experience a variety of emotional responses. While work has been done on social workers' and nurses' reactions to patient death, home health aides (HHAs) have been overlooked. To address this gap, we conducted focus groups and individual qualitative interviews with 14 hospice HHAs. Questions covered HHAs' grief responses and how they coped with grief. We found a high burden of grief reactions; many HHAs often developed very close patient relationships. HHAs also noted that they often started working with new patients almost immediately after a death, leaving little time to process the loss. However, HHAs found support from other HHAs, their supervisors, as well as family, friends, and spiritual practices to be helpful in coping with their grief. Future work should enhance support to HHAs around patient loss; for example, grief support may be embedded into hospice team activities.

Assessing the palliative care needs and service use of diverse older adults in an urban medically-underserved community.

Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.

Associations between psychological symptoms and treatment outcomes of a massage therapy intervention: Secondary analyses of a randomized controlled trial.

Massage therapy (MT) may be more effective for certain subgroups of advanced cancer patients, but this is not well-studied. Psychological symptoms are one potential moderator of MT outcomes, as they occur frequently in MT patients. Therefore, we conducted a secondary analysis of data from a multi-site study which compared MT to simple touch in 380 adults with advanced cancer. We examined whether the presence of depression or baseline psychological symptom frequency moderated outcomes of change in pain, interference of pain, quality of life, 60-second heart and respiratory rates, and physical distress. We found significant main effects of depression and baseline psychological symptom frequency on changes in pain, 60-second heart and respiratory rates, quality of life, and physical distress for both MT and simple touch, but did not find differential responses between groups in moderator analyses. Results imply that psychological interventions could be targeted to patients with cancer who are receiving any type of touch therapy to improve outcomes.

"Opening the door": developing and pilot testing an adult protective services worker engagement training in New York city.

About 10% of Americans over the age of 60 experience elder abuse (EA), but EA is frequently under detected. As the primary responders for alleged EA cases, Adult Protective Service (APS) caseworkers are ideally positioned to improve detection and intervention. The Opening the Door (OTD) training was developed in a multidisciplinary setting and designed in collaboration with APS workers to enhance their engagement skills in potential EA cases and thus maximize the possibility of disclosure. Rooted in a relational approach and utilizing adult learning theory, it is divided into three main topics: Preparing for Engagement, Engagement Practice, and Processing Engagement. The eight-hour training was piloted with three groups of urban APS caseworkers with a wide range of work experience. Pre- and post-tests and case reflections indicate a positive impact on caseworkers' sense of self-efficacy, while focus groups indicate the necessity for ongoing provision of trainings and development of additional supports for APS caseworkers. Future work could further explore the efficacy of the training and expand its reach.

Measures of Financial Capacity: A Review.

PURPOSE OF THE STUDY: Capacity to manage finances and make financial decisions can affect risk for financial exploitation and is often the basis for legal determinations of conservatorship/guardianship. Several structured assessments of financial capacity have been developed, but have not been compared regarding their focus, validity, or reliability. Therefore, we conducted a review of financial capacity measures to examine these factors. DESIGN AND METHODS: We searched electronic databases, reference lists in identified articles, conference proceedings and other grey literature for measures of financial capacity. We then extracted data on the length and domains of each measure, the population for which they were intended, and their validity and reliability. RESULTS: We identified 10 structured measures of financial capacity. Most measures could be completed in 25-30 min, and were designed to be administered to older adults with some level of cognitive impairment. Reliability and validity were high for most. IMPLICATIONS: Measurement of financial capacity is complex and multidimensional. When selecting a measure of financial capacity, consideration should be made of the population of focus and the domains of capacity to be assessed. More work is needed on the cultural sensitivity of financial capacity measures, their acceptability, and their use in clinical work. Better understanding of when, and to whom, to administer different financial capacity measures could enhance the ability to accurately detect those suffering from impaired financial capacity, and prevent related negative outcomes like financial exploitation.

Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms.

OBJECTIVES:: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG). METHODS:: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed. RESULTS:: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral. DISCUSSION:: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Identifying Palliative Care Needs Among Older Adults in Nonclinical Settings.

Though palliative care is appropriate for patients with serious illness at any stage of the illness and treatment process, the vast majority of palliative care is currently delivered in inpatient medical settings in the past month of life during an acute hospitalization. Palliative care can have maximal benefit to patients when it is integrated earlier in the illness trajectory. One possible way to increase earlier palliative care use is to screen for unmet palliative care needs in community settings. The goal of this study was to assess the rates of unmet palliative care needs in older adults who attend New York City-based senior centers. The results of this study revealed that 28.8% of participants screened positive for unmet palliative care needs. Lower education and living alone were predictors of positive palliative care screens, but age, gender, marital status, and race were not. This study determined that the rate of unmet palliative care needs in community-based older adults who attend senior center events was high and that living arrangement and education level are both correlates of unmet palliative care needs. Screening for unmet palliative care needs in community settings is a promising approach for moving palliative care upstream to patients who could benefit from the additional supportive services prior to an acute hospitalization.

Development of a Community-Based Palliative Care Screening Tool for Underserved Older Adults With Chronic Illnesses.

Although they experience high rates of chronic illness, low-income minority communities have traditionally underutilized palliative care services compared to whites and those with higher incomes. One reason for this trend is lack of screening by community providers. We utilized a community-based participatory research approach to develop and implement an innovative multidomain palliative care screening tool in aging service agencies. Participants were aging service providers and clients in the East and Central Harlem neighborhoods of New York City, which are characterized by high poverty, largely African American and Latino populations, disproportionally high rates of chronic conditions, and limited health-care access. Screening tool development included reviewing existing measures and obtaining feedback from an expert panel, aging service providers, and older adults. We developed a 22-item tool covering 3 domains of palliative care need (physical symptoms, emotional concerns, and goals of care), which can be administered in 10 to 15 minutes. Sixteen providers at 2 aging service agencies were trained to use the tool over a 3-month pilot period. The tool showed evidence of feasibility of implementation, with 44 older adult clients screened. Providers reported high acceptability, 36% of clients screened positive, and the majority accepted referrals to outpatient palliative care clinics. The screening tool has the potential to increase palliative care utilization among underserved community-dwelling older adults and may improve their quality of life, potentially in communities worldwide. Future work should examine the psychometric proprieties of the tool, examine predictors of positive screens, explore its impact on clinical outcomes, and expand its reach.

Factors associated with depression detection in a New Hampshire mental health outreach program.

OBJECTIVES: For mental health outreach programs for older adults, accurately detecting depression is key to quality service provision. Multiple factors, including gender, cognitive impairment, or recent bereavement may affect depression detection, but this is under-studied. Therefore, we sought to both establish rates of depressive symptom detection and to examine factors associated with inaccuracies of detecting depression among participants in a mental health outreach program serving older adults. METHOD: We conducted a chart review of 1126 cases in an older adult-focused mental health outreach program in New Hampshire, the Referral Education Assistance & Prevention (REAP) program. Accuracy of depression detection was identified by comparing screen-positive scores for depressive symptoms on the 15-item Geriatric Depression Scale (GDS) to depression identification by counselors on a 'presenting concerns' list. RESULTS: Inaccurate depression detection (positive on the GDS but depression not identified by counselors) occurred in 27.6% of cases. Multivariate regression analyses indicated that anxiety, cognitive concerns, and rurality were all associated with detection innaccuracy. CONCLUSION: This study appears to be the first to examine factors influencing depression detection in a mental health outreach program. Future efforts should help ensure that all older mental health outreach clients have depression detected at optimal rates.

Training residents in depression and grief.

BACKGROUND: About 20 per cent of Americans will experience depression in their lifetimes, and almost all will experience the death of a loved one. Both depression and grief have been associated with adverse health outcomes, including a decline in quality of life and excess mortality. Primary care physicians (PCPs) are the initial health care contact for most patients with depression and grief, yet often perceive that they lack the skills to adequately address these issues. Previous studies have investigated whether educational efforts improve PCP depression and grief knowledge or perceived skills, but few have focused on medical residents. There is the potential that resident education may impact practice over a longer span of time than later career training, simply because it occurs earlier in one's medical career. METHODS: The authors examined whether a brief educational curriculum, delivered in two 2-hour sessions to 40 internal medicine residents, was associated with changes in knowledge, attitudes, comfort level and reported behaviours, with regards to grieving or depressed patients. Self-report surveys were administered before and about 5 months after receipt of the new curriculum. RESULTS: Residents receiving the curriculum reported increases in knowledge, confidence and self-reported behaviours in working with patients suffering depression and grief. Both depression and grief have been associated with adverse health outcomes DISCUSSION: Although more research is needed to determine whether these findings can be replicated in other settings, the results are promising. Further dissemination of such training may ultimately enhance the detection and treatment of depression and grief in primary care, and decrease the associated emotional and functional burdens in patients.

Professional quality of life of adult protective service workers.

Adult Protective Services (APS) workers are exposed to substantial occupational hazards and job stress, but these stressors are underdocumented. Therefore, we sought to describe APS workers' work environments and responses to occupational hazards and stressors, including compassion fatigue, burnout, and secondary traumatic stress. Survey data were gathered with closed-ended questionnaires administered to APS workers in an urban setting. Virtually all workers (97%) reported exposure to one or more environmental hazards in their work, and 80% reported hazard exposure in the past month. Workers also reported mixed responses to their work environment and to experiences with supervision. A sizable minority (22.7%) was at high risk for burnout, 24.6% were at risk for secondary traumatic stress, and 19.9% reported low compassion satisfaction. The results document multiple stressors in APS work. The APS partner is committed to ongoing efforts to better support its staff, and these findings can inform future efforts to enhance supervisor support and worker self-care, to minimize burnout and secondary traumatic stress.

Expanding palliative care's reach in the community via the elder service agency network.

Over the past two decades, palliative care has established itself as a promising approach to address the complex needs of individuals with advanced illness. Palliative care is well-established in US hospitals and has recently begun to expand outside of the hospital setting to meet the needs of non-hospitalized individuals. Experts have called for the development of innovative community-based models that facilitate delivery of palliative care to this target population. Elder service agencies are important partners that researchers should collaborate with to develop new and promising models. Millions of older adults receive aging network services in the U.S., highlighting the potential reach of these models. Recent health care reform efforts provide support for community-based initiatives, where coordination of care and services, delivered via health and social service agencies, is highly prioritized. This article describes the rationale for developing such approaches, including efforts to educate elder service agency clients about palliative care; training agency staff in palliative care principles; building capacity for elder services providers to screen individuals for palliative care needs; embedding palliative care "champions" in agencies to educate staff and clients and coordinate access to services among those with palliative care needs; and leveraging telehealth resources to conduct comprehensive assessments by hospital palliative care teams for elder service clients who have palliative care needs. We maintain that leveraging the resources of elder service agencies could measurably expand the reach of palliative care in the community.

Performance and psychometric properties of the Interpersonal Support Evaluation List (ISEL) in older adults with Complicated Grief.

BACKGROUND: Complicated Grief (CG) is a recently recognized bereavement-related mental health disorder. Social support is commonly measured with the Interpersonal Support Evaluation List (ISEL), a 40-item, 4-factor, self-report measure. Though the ISEL has been well-studied, no identified research has examined its psychometric properties or performance in older adults with CG. METHODS: We examined the psychometric properties of the ISEL in adults age ≥60 who enrolled in a psychotherapy treatment study for CG in New York City. We also examined the association of ISEL scores with CG severity, and with clinical and sociodemographic variables. RESULTS: Internal consistency of the ISEL was high (α=0.95). Confirmatory factor analysis indicated that most of the ISEL items loaded strongly (>0.45) on the original 4 factors. Mean ISEL score was 68.1, which indicated lower social support than population norms. ISEL scores were significantly but modestly negatively correlated with grief severity. ISEL total scores also varied by sociodemographic and clinical variables; never being married, depression or anxiety diagnosis, and living alone were all associated with lower ISEL scores. LIMITATIONS: A clinical help-seeking sample, with low sociodemographic and geographic variability, may limit the generalizability of the findings. Also, analyses were cross-sectional and directionality of associations could not be determined. CONCLUSIONS: The 40-item ISEL may be a useful measure for those studying social support in the context of CG. Given the strikingly low levels of social support, intervention strategies for CG should include components addressing social support.

Adult separation anxiety disorder in complicated grief: an exploratory study on frequency and correlates.

INTRODUCTION: Complicated grief (CG) has been the subject of increasing attention in the past decades but its relationship with separation anxiety disorder (SEPAD) is still controversial. The aim of the current study was to explore the prevalence and clinical significance of adult SEPAD in a sample of help-seeking individuals with CG. METHODS: 151 adults with CG, enrolled in a randomized controlled trial comparing the effectiveness of (CG) treatment to that of interpersonal therapy, were assessed by means of the Inventory of Complicated Grief (ICG), the Structured Clinical Interview for DSM-IV, the Hamilton Rating Scale for Depression (HAM-D), the Work and Social Adjustment Scale (WSAS), the Adult Separation Anxiety Questionnaire (ASA-27), the Grief Related Avoidance Questionnaire (GRAQ), the Peritraumatic Dissociative Experiences Questionnaire (PDEQ), and the Impact of Events Scale (IES). RESULTS: 104 (68.9%) individuals with CG were considered to have SEPAD (ASA-27 score ≥22). Individuals with SEPAD were more likely to have reported a CG related to the loss of another close relative or friend (than a parent, spouse/partner or a child) (p=.02), as well as greater scores on the ICG (p=<.001), PDEQ (p=.004), GRAQ (p<.001), intrusion (p<.001) and avoidance (p=<.001) IES subscales, HAM-D (p<.001) and WSAS (p=.006). ASA-27 total scores correlated with ICG (p<.0001), PDEQ (p<.001) GRAQ (p<.0001) scores and both the IES intrusion (p<.0001) and IES avoidance (p<.0001) subscale scores. People with SEPAD had higher rates of lifetime post-traumatic stress disorder (PTSD) (p=.04) and panic disorder (PD) (p=.01). CONCLUSIONS: SEPAD is highly prevalent among patients with CG and is associated with greater symptom severity and impairment and greater comorbidity with PTSD and PD. Further studies will help to confirm and generalize our results and to determine whether adult SEPAD responds to CG treatment and/or moderates CG treatment response.

Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care.

Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.

Utilization of Hospice Bereavement Support by At-Risk Family Members.

Approximately 10% of the bereaved are at risk of bereavement-related mental health disorders. Hospices' bereavement services could potentially address needs of many at risk, but little is known about their service use. We analyzed data from 6160 bereaved family members of hospice patients. Risk of mental health problems was identified by hospice providers postloss. Of those characterized as "at-risk," 52% used services compared to 18% of the "low risk." Factors associated with service use among at-risk were female gender and younger age of death. Those who lost a child used services less than other bereaved. Although hospices appear to be skilled at identifying and providing bereavement services to the at-risk, services do not reach almost half. Results suggest the need to improve care access, especially among men and those losing a child.

Factors Associated with Providers' Perceptions of Mental Health Care in Santa Luzia's Family Health Strategy, Brazil.

Brazil has a unique mental health care system, characterized by universal coverage delivered by interdisciplinary teams both in the community and in specialized centros de atenção psicossocial (CAPS-psychosocial care centers). Provision of patient-centered mental health care is an important principle of Brazilian mental health care, but this topic has not been well-studied. We analyzed data from a cross-sectional survey of 151 community health workers (CHWs), nurses, and physicians in Santa Luzia, Minas Gerais State, Brazil. Chi-squares, t-tests and multivariate regression analyses examined differences in socio-demographics, caseload, engagement in evidence-based practices (EBPs), and transdisciplinary collaboration between providers who reported providing high levels of patient-centered mental health care and those who did not. In multivariate regression models, components of transdisciplinary collaboration were significantly associated with providers' perceptions of patient-centered mental health care (p < 0.05). CHWs were also significantly more likely to report providing patient-centered care than physicians and nurses. EBP engagement and sociodemographics were not associated with perceptions. Results suggest that training efforts to improve patient-centered mental health care in Brazil could build upon CHWs' skills and focus on transdisciplinary collaboration. Findings may inform practice in other countries with similar health care systems.

Hospice Services for Complicated Grief and Depression: Results from a National Survey.

OBJECTIVES: To describe the prevalence of screening for complicated grief (CG) and depression in hospice and access to bereavement therapy and to examine whether screening and access to therapy varied according to hospice organizational characteristics or staff training and involvement. DESIGN: Cross-sectional national survey conducted from 2008 to 2009. SETTING: United States. PARTICIPANTS: Hospices (N = 591). MEASUREMENTS: Whether hospices screened for depression or CG at the time of death or provided access to bereavement therapy (individual or group). Organizational characteristics included region, chain status, ownership, and patient volume. Staffing-related variables included training length and meeting attendance requirements. RESULTS: Fifty-five percent of hospices provided screening for CG and depression and access to bereavement therapy, 13% provided screening but not access to bereavement therapy, 24% provided access to bereavement therapy but not screening, and 8% neither screened nor provided access to bereavement therapy. Hospices with 100 patients per day or more were significantly more likely to provide screening and access to bereavement therapy. CONCLUSION: Hospices appear to have high capacity to provide screening for CG and depression and to deliver group and individual therapy, but data are needed on whether screeners are evidence based and whether therapy addresses CG or depression specifically. Future work could build upon existing infrastructure to ensure use of well-validated screeners and evidence-based therapies.