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.

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.

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.

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.

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.

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.

Brief measure for screening complicated grief: reliability and discriminant validity.

BACKGROUND: Complicated grief, which is often under-recognized and under-treated, can lead to substantial impairment in functioning. The Brief Grief Questionnaire (BGQ) is a 5-item self-report or interview instrument for screening complicated grief. Although investigations with help-seeking samples suggest that the BGQ is valid and reliable, it has not been validated in a broader population. METHODOLOGY/PRINCIPAL FINDINGS: A questionnaire was mailed to a randomly selected sample (n = 5000) residing in one of 4 areas of Japan. The BCQ was examined for responders who were bereaved more than 6 months and less than 10 years (n = 915). Non-specific psychological distress was assessed with the K6 screening scale. Multiple group confirmatory factor analysis supported a uni-dimensional factor structure and the invariance of parameters across gender and age. Cronbach's alpha was sufficiently high (alpha = .75) to confirm internal consistency. Average Variance Extracted (0.39) was higher than the shared covariance (0.14) between BGQ and K6, suggesting discriminant validity. CONCLUSIONS: The results of this study support the reliability and validity of the BGQ in the Japanese population. Future studies should examine predictive validity by using structured interviews or more detailed scales for complicated grief.

Prevalence and correlates of complicated grief in adults who have undergone a coronary artery bypass graft.

BACKGROUND: Complicated grief (CG) is a recently described mental health condition that follows bereavement. CG is often comorbid with depression and may also be associated with poor health outcomes. However, CG has not been studied in depressed medically ill populations. This study examined the prevalence, correlates, and impact of CG in depressed post-coronary artery bypass graft surgery (CABG) patients. METHODS: A 5-item CG screen was administered to 302 depressed post-CABG patients participating in a comparative effectiveness intervention trial at 7 Pittsburgh-area hospitals from March 2004 to September 2007. Eligible patients were randomly assigned to either a telephone-delivered collaborative care intervention for depression or their primary care physicians' usual care. Measures examined depression, physical and mental health-related quality of life, and physical functioning over 8 months. RESULTS: Compared to CG screen-negative patients, CG screen-positive patients were younger, more likely to: be female, non-White, have lost a partner or child, and to have used tobacco or antidepressants. At baseline, they had significantly higher depression and lower mental health scores. At 8 months, screen-positives had poorer physical functioning and marginally higher depression scores. LIMITATIONS: The study lacked a definitive measure of CG. Moreover, the CG-positive group was relatively small, reducing the power to detect differences between groups or control for the possible influence of other variables on identified results. CONCLUSIONS: CG in depressed post-CABG patients is associated with negative health and mental health outcomes. These results underscore the importance of identifying and treating CG in depressed medically ill populations.