Hospice Knowledge, Attitudes, and Preference among Older Chinese Immigrants in the United States.

Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.

Disrespectful and inadequate palliative care to transgender persons.

OBJECTIVES: The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners. METHODS: A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care. RESULTS: Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient's gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner. SIGNIFICANCE OF RESULTS: These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient's or spouse's/partner's gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient's wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.

Disrespectful and inadequate palliative care to lesbian, gay, and bisexual patients.

OBJECTIVES: The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity. METHODS: A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners. RESULTS: There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner. SIGNIFICANCE OF RESULTS: These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.

When lightning strikes twice: Perceptions of oncology social workers about working with families with two members in treatment.

OBJECTIVE: Families with a parent and child concurrently receiving cancer treatment are not common, but their needs are typically more complex than families with only one member in treatment. They have a heightened sense of loss, vulnerability, and mortality. The study purpose was to: (1) describe quality of life, social support, resiliency, and loss for these families; and (2) describe how healthcare teams can support these families. METHODS: This was a qualitative study with 20 oncology social workers who had worked with families with a parent and child concurrently receiving treatment for cancer within the past five years. The interview included questions about the emotional, social, financial, and other needs of these families, as well as their social support, quality of life, loss, and resiliency. RESULTS: Three themes emerged from the data: 1. Increased demands on the family with a concurrent cancer treatment, including emotional, financial, and logistical challenges for the ill parent and child and for the healthy parent and siblings; 2. Greater resilience and coping skills were experienced by some families; and 3. Implications for the healthcare team, including emotional distress in treating these families, challenges in treatment adherence, and providing the necessary support to these families. CONCLUSION: Supporting these families is challenging for social workers and other members of the healthcare team. Understanding the emotional, financial and logistical needs of these families, and coordinating their care across the adult and pediatric teams, will better support the patients, as well as the healthcare providers who work with them.

Hospice social workers' perception of being valued by the interdisciplinary team and the association with job satisfaction.

Being valued and respected by colleagues is an important contributor to job satisfaction in hospice and other health care settings. The purpose of this study was to examine how the perception of feeling valued by different members of the interdisciplinary team and interdependence of team members are related to hospice social workers' job satisfaction. The study aims were to examine: (1) the degree to which hospice social workers feel valued by other members of the interdisciplinary team; and 2) whether this is associated with job satisfaction. A nonprobability sample of 203 hospice social workers completed an online survey assessing job satisfaction, perception of feeling valued by each of the professionals on the interdisciplinary hospice team, interdependence of team members, and professional and personal characteristics. The final regression model for intrinsic job satisfaction included feeling valued by doctors and by other social workers, and interdisciplinary interdependence. The final model for extrinsic job satisfaction did not include any of the perception of feeling valued by others on the interdisciplinary team, although interdependence and the number of social workers at the hospice were significant in this model. Reasons for the difference in these models and the practice and policy implications are discussed.

What are social work students being taught about palliative care?

OBJECTIVE: Palliative social workers have taken steps to increase the numbers of social workers trained and competent to deliver effective psychosocial palliative care. Despite these developments, masters of social work (MSW) programs have only begun to develop curricula preparing students for entry-level practice. This study sought to determine the type and extent of content areas included in MSW courses dedicated to palliative care or with content related to palliative care practice. METHOD: A cross-sectional study using an online questionnaire was conducted. All 248 accredited MSW programs in the United States and 32 programs in Canada were invited to participate. Participants were asked to name the courses in their MSW program that were dedicated to, or included content on, palliative care, and submit the syllabi for these courses. Data comprised course content for each class session and required readings. A grounded theory approach was used to identify the topics covered. RESULT: Of the 105 participating programs that responded to the survey, 42 submitted 70 syllabi for courses with at least some palliative care content. There were 29 topics identified. The most common topic was grief, loss, and bereavement, followed closely by behavioral and mental health issues, and supporting family and friends; cultural perspectives and advance care planning were also common topics. For the 10 syllabi from courses dedicated to palliative care, supporting family was the most common topical area, followed closely by interprofessional practice and advance care planning. SIGNIFICANCE OF RESULTS: Although there are many challenges to introducing palliative care content into MSW programs, including unqualified faculty and competing course material and electives of equally compelling content, there are model curricula for dedicated palliative care courses. With the large growth of palliative care programs, the time is ripe to add specialty palliative care courses and to add palliative care content into existing courses.

Social Workers' Perceptions of Job Satisfaction, Interdisciplinary Collaboration, and Organizational Leadership.

To address job satisfaction, and therefore employment retention, of hospice social workers, this study examined how relationships with other members of the interdisciplinary hospice team and perceptions of hospice leadership may be associated with job satisfaction of hospice social workers. The sample of 203 hospice social workers was recruited by e-mailing invitations to hospice social workers identified by hospice directors in three states, use of online social media sites accessed by hospice social workers, and snowball sampling. Study measures included professional experience, hospice characteristics, interdisciplinary collaboration, perception of servant leadership, and intrinsic and extrinsic job satisfaction. Variables significant in the model for intrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, and feeling valued by the hospice physician. Variables significant in the model for extrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, feeling valued by the hospice physician, and number of social workers at the hospice. Interdisciplinary collaboration was more important for intrinsic job satisfaction and leadership style was more important for extrinsic job satisfaction. Profit status of the hospice, experience of the social worker, caseload size, and other variables were not significant in either model. These results support previous findings that leadership style of the hospice director and relationships with hospice colleagues are important for hospice social workers' job satisfaction. Such low-cost modifications to the hospice work environment, albeit not simple, may improve job satisfaction of hospice social workers.

Palliative and end-of-life care in the masters of social work curriculum.

ABSTRACTObjective:There is a shortage of social workers who have palliative care expertise. The aging U.S. population and advances in extending life for seriously ill persons require social workers in a wide range of health care and other settings with specialized palliative care expertise, as well as those with basic competence in palliative care. The objective of the present study was to document course content on palliative care in MSW programs in the United States and Canada. METHOD: A cross-sectional design with an online questionnaire was used. All 248 accredited MSW programs in the United States and 32 programs in Canada were invited to participate. The measures included the characteristics of the courses on palliative care. RESULTS: Of the 105 participating programs, only 10 had courses dedicated to palliative care, 9 of which were part of a specialization/certificate program. Few programs had plans to develop a dedicated course. There were 106 courses in 63 MSW programs with some content on palliative care. The majority of these had <25%, and few had at least 50%, of palliative care content. SIGNIFICANCE OF RESULTS: Curricula are needed for preparing MSW graduates for specialty hospice and palliative care practice and non-specialty practice. While there are practice competencies for specialty practitioners, consensus on a core curriculum for all MSW students would be beneficial. Consensus on basic palliative care knowledge and skills for non-specialty social workers in health care and other settings and subsequent curriculum development are also needed. Innovative ways in which to introduce basic and more specialized content on palliative care into the already-crowded MSW curricula will be needed.

Congruence Between Older Chinese Immigrants and Their Adult Children on Hospice Attitudes and Preferences: An Actor-Partner Interdependence Model.

Objectives: This study investigates the alignment of awareness, attitudes, and preferences regarding hospice care between older Chinese immigrants and their adult children. Methods: Forty older Chinese immigrants and their adult children in New York City were assessed for their awareness, attitudes, and preferences for hospice care. McNemar's and Cohen's Kappa tests examined differences and congruence within parent-child dyads. The Actor-Partner Interdependence Model (APIM) was employed for dyadic analysis using structural equation modeling (SEM). Results: Discrepancies were observed between older parents and adult children, with the latter showing higher awareness and more positive attitudes toward hospice care compared to their parents. While 84.2% of older parents expressed willingness to accept hospice care, only 65.7% of their children believed their parents would desire hospice, and only 39.5% of children expressed a preference for hospice care for their parents. Kappa coefficients indicated poor-to-slight agreement within parent-child dyads, but there was a fair level of agreement in children's perceptions of their parents' preferences and their own preferences for parents. APIM revealed significant actor effects but nonsignificant partner effects, suggesting that parents' and children's preferences are influenced by their own attitudes, but not by those of other family members within the parent-child dyads. Conclusion: The incongruence in attitudes and preferences for hospice care between Chinese immigrant older adults and their children emphasizes the need for culturally-informed education and interventions to facilitate open conversations and ensure patient-centered end-of-life care for older Chinese immigrants.

Educating Social Workers in Palliative and End-of-Life Care: Development and Implementation of a New National Training Program.

Background: Educating Social Workers in Palliative and End-of-Life Care (ESPEC) is a nationally scalable continuing education program designed to improve the knowledge and skills of frontline health social workers caring for patients with serious illness. Objectives: This article describes ESPEC's rationale, development, and initial implementation. Design: Following the creation of consensus-derived core primary palliative care competencies for health primary care social workers based on the eight domains of palliative care outlined in the National Consensus Project Guidelines for Quality Palliative Care, an evidence-based curriculum was developed. This was used to develop a hybrid training model with a self-study component, synchronous instructor-led skills-based training, leadership training, and mentorship. The interactive curriculum incorporates patient scenarios highlighting the health social work role. Training targets high-impact skills-the biopsychosocial-spiritual assessment, advance care planning, family meetings, and interprofessional communication-and professional development. Settings/Subjects: ESPEC was launched in the United States in collaboration with the National Association of Social Workers (NASW) and the Social Work Hospice and Palliative Care Network (SWHPN). Results: The preliminary launch demonstrated high user acceptability, positive ratings for content and format, and gains in knowledge and competence. Conclusions: Data suggest that ESPEC can increase health social workers' knowledge and confidence as providers of palliative care interventions. National dissemination is ongoing.

LGBTQIA+ inclusion in the global health policy agenda: A critical discourse analysis of the Lancet Commission report archive.

CONTEXT: LGBTQIA+ people worldwide experience discrimination, violence, and stigma that lead to poor health outcomes. Policy plays a crucial role in ensuring health equity and safety for LGBTQIA+ communities. Given Lancet Commissions' substantial impact on health policy across domains, we aimed to determine how LGBTQIA+ communities and their care needs are incorporated throughout Lancet Commission reports and recommendations. METHODS: Using critical discourse analysis, we analyzed 102 Commissions for inclusion of and reference to LGBTQIA+ communities using 36 key terms. Three levels of analysis were conducted: 1) micro-level (overview of terminology use); 2) meso-level (visibility and placement of LGBTQIA+ references); and 3) macro-level (outlining characterizations and framing of references with consideration of broader social discourses). FINDINGS: 36 of 102 (35%) Commissions referenced LGBTQIA+ communities with 801 mentions in total. There were minimal (9/36) references made in the "Executive Summary," "Recommendations," and/or "Key Messages" sections of reports. LGBTQIA+ communities were most frequently discussed in reports related to HIV/AIDS and sexual and reproductive health. Few Commissions related to public health, or chronic conditions (9/60) referenced LGBTQIA+ communities. Some reports made non-specific or unexplained references; many discussed the LGBTQIA+ population without specific reference to sub-groups. LGBTQIA+ communities were often listed alongside other marginalized groups without rationale or a description of shared needs or experiences. We identified framings (legal, vulnerability, risk) and characterizations (as victims, as blameworthy, as a problem) of LGBTQIA+ communities that contribute to problematizing discourse. CONCLUSIONS: LGBTQIA+ people were rarely included in the Commissions, resulting in an inadvertent marginalization of their health needs. Policy initiatives must consider LGBTQIA+ groups from a strengths-based rather than problematizing perspective, integrating evidence-based approaches alongside community-based stakeholder engagement to mitigate inequities and promote inclusive care and policymaking.

Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers.

Discrimination against lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons in health care creates barriers to serious illness care, including patients avoiding or delaying necessary care, providers disrespecting wishes of surrogates, and adverse outcomes for patients and families. A cross-sectional mixed-methods study using an online survey was used to determine the extent to which LGBTQ+ patients and spouses, partners, and widows experienced disrespectful or inadequate care due to sexual orientation or gender identity. A total of 290 LGBTQ+ patients and partners reported high levels of disrespectful and inadequate care, including 35.2% stating their provider was insensitive to them because of their identity; 30% reporting their provider was unaware of LGBTQ+ health needs; 23.1% feeling judged; 20.7% experiencing rudeness; 20.3% stating providers did not use their correct pronouns; and 19.7% reporting their treatment decisions were disregarded. Black and Hispanic patients were 2-4 times more likely than non-Hispanic White patients to report discrimination. This study demonstrated high levels of disrespectful and inadequate care towards patients and partners due to being LGBTQ+, which was especially problematic for Black and Hispanic patients and those living in politically conservative regions. Recommendations include federal and state civil rights laws to prohibit LGBTQ+ discrimination and institutional practices to address discrimination, including cultural sensitivity training for staff.

Self-perceived competence among medical residents in skills needed to care for patients with advanced dementia versus metastatic cancer.

To examine medical residents' perceived competence in caring for patients with dementia we conducted an online survey of all 120 second, third and fourth-year residents in Internal Medicine, Medicine/Pediatrics, and Family Medicine at University of Michigan. A structured survey elicited residents' training, experience, confidence, and perceived career needs for skills in estimating prognosis, symptom management, and communication in caring for patients with dementia, compared to patients with metastatic cancer. Among the 61 (51 %) respondents, a majority report lower confidence in assessing prognosis and eliciting treatment wishes in patients with dementia (vs. metastatic cancer), and in performing skills integral to the care of patients with dementia, including the ability to assess caregiver needs, decisional capacity, advise on place of care, and manage agitation, despite viewing these skills as important to their future careers. These findings support the need for enhanced education on optimal care of patients with advanced dementia.

Advance directives among Korean American older adults: knowledge, attitudes, and behavior.

The study objective was to explore knowledge, attitudes, and behavior about advance directives and how cultural values influence these beliefs. Three focus groups with 23 Korean American older adults were conducted. Advance directives were seen as helpful for ensuring that preferences for unwanted end-of-life treatment are honored and for relieving the decision-making burden on family members. However, some viewed completing advance directives as contrary to focusing on living. Culturally competent education about advance directives for Korean American older adults is necessary to help them make informed decisions about end-of-life care and informing family and health care providers of these preferences.

New York City Senior Centers: Who Participates and Why?

Purpose: Senior centers are focal points of services and programs. Study aims were to describe the frequency of and benefits of attending senior centers and nonmembers' reasons for nonattendance. Methods: A total of 597 senior center members and 298 community-residing nonmembers in New York City were interviewed. Males and age of 75+ years members were oversampled. Results: Mean days attended weekly = 3.00 days/week (SD = 1.71). Latinx seniors attended 1 day > White non-Latinx seniors. Seniors in poor/bad health attended .67 fewer days than seniors in excellent health. Almost all members (96.3%) reported benefiting from attendance. The most common benefits were socialization/making friends, educational programs, something to do, being with people like them, meals, and improved mental and physical health. Reasons nonmembers gave for nonattendance were too busy with social/leisure activities or work, not interested or do not need programs/services, do not want/need socialization, and members were older or more disabled than them. Conclusion: Implications for recruiting underserved and isolated seniors are discussed.

Improving the Hospice and Palliative Care Experiences of LGBTQ Patients and Their Caregivers.

Primary care providers often express a desire to be more involved with their patients as they transition to hospice care. Given that these providers have a central role in the care of their patients, they have the potential to significantly improve the experiences of lesbian, gay, bisexual, transgender, and queer patients who face serious illnesses. This article discusses the barriers to quality hospice and palliative care experienced by many sexual and gender minorities, as well as specific ways in which primary care physicians can promote equitable end-of-life care.

The relationship between health information sources and mental models of cancer: findings from the 2005 Health Information National Trends Survey.

This study used data from the 2005 Health Information National Trends Survey, a national sample of U.S. households (N = 5,586), to (1) explore the extent to which specific sources of health information are associated with certain beliefs about cancer; and (2) examine whether the relationship between health information sources and beliefs about cancer is moderated by psychological distress. Health information on the local news was associated with greater ambiguity about cancer prevention recommendations (OR 1.22, 95% CI 1.02-1.46, p < .05), while less ambiguity was associated with cancer-specific information (OR 0.81, 95% CI 0.69-0.94, p < .05), health information in the newspaper (OR 0.82, 95% CI 0.69-0.97, p < .05), and health information on the Internet (OR 0.71, 95% CI 0.61-0.84, p < .001). Health information on the local news was also associated with lower likelihood of higher perceived relative risk of cancer (OR 0.67, 95% CI 0.52-0.86, p < .01). No source of information was associated with the belief that cancer is primarily caused by behavior/lifestyle factors. Psychological distress greatly increased the optimistic bias of those who read health information in the news (OR 3.68, 95% CI 1.69-8.03, p < .001) but had no other moderating effect. Findings suggest that information seeking using active channels of health information decreases ambiguity and corrects for optimistic bias.

Role of children in end-of-life treatment planning among Korean American older adults.

Three focus groups (n = 23) with Korean American older adults explored the role of culture in end-of-life decision making. No participants had completed an advance directive and few had discussed end-of-life treatment preferences. Focus group themes addressed: (a) whether children are resistant or receptive to discussing their parents' end-of-life treatment preferences; (b) whether the older adults or their children should make decisions about end-of-life treatment; (c) whether decision making should be the responsibility of the eldest son or of all the children; and (d) whether children would implement the parent's preferences for end-of-life treatment. Understanding the role of children in end-of-life decision making among Korean American older adults is important for culturally competent care.

What and when Korean American older adults want to know about serious illness.

The aim of this exploratory study was to describe disclosure preferences about serious illness among Korean American older adults. Three focus groups (N = 6, 8, and 9) were conducted with Korean Americans age 65+ from two senior centers and a primary care practice in NYC. Six themes were identified: (1) Disclosure allows patients to make decisions and preparations, (2) Disclosure may cause emotional distress and hasten death, (3) Disclosure may be based on physician error or inability to know prognosis, (4) Disclosure should be based on severity of illness and the need to maintain hope, (5) Disclosure should be based on age, and (6) Disclosure practices of physicians vary by culture. Providing culturally competent care to East Asian older adults requires understanding the importance of family values and traditions, but not making assumptions about the degree to which the patient adheres to these beliefs.

Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team.

Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers. Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity. Design: A cross-sectional study using an online survey. Setting/Subjects: Home and residential hospice, inpatient palliative care service, and other inpatient and outpatient settings. Subjects were 865 hospice and palliative care providers, including physicians, social workers, nurses, and chaplains. Measurements: Inadequate, disrespectful, or abusive care to LGBT patients and discriminatory treatment of family and surrogates were measured. Results: Among respondents, 53.6% thought that lesbian, gay, or bisexual (LGB) patients were more likely than non-LGB patients to experience discrimination at their institution; 23.7% observed discriminatory care; 64.3% reported that transgender patients were more likely than nontransgender patients to experience discrimination; 21.3% observed discrimination to transgender patients; 15% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 14.3% observed the spouse/partner or surrogate being treated disrespectfully. Conclusions: These findings provide strong evidence that LGBT patients and their families are more likely to receive discriminatory care as compared with those who are not LGBT. Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.