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.

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.

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.

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.

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.

Defining Core Competencies for Generalist-Level Palliative Social Work.

CONTEXT: Care provided to seriously ill patients by frontline social workers is a component of generalist-level palliative care. The core competencies for high-quality generalist-level palliative social work are necessary to promote training curricula and best practices but have not yet been defined in the U.S. OBJECTIVE: The objective of this study was to develop consensus-derived core competencies for generalist-level palliative social work. METHODS: Fifty-five proposed social work competencies were categorized by the eight domains of palliative care identified by the National Consensus Project for Quality Palliative Care. The competencies were rated by 41 regionally dispersed, Master's level social workers selected through purposive and snowball sampling using a Delphi method. Each was rated as essential for generalist-level palliative social work, acceptable with modifications, or rejected based on the judgment that it was not essential for generalist-level palliative social work or was outside the scope of practice. Consensus was defined as >70% agreement to accept or reject a competency. Three review rounds were needed to achieve consensus on all competencies. RESULTS: Two competencies were added to the original list. Of the 57 proposed competencies, 41 were accepted (19 after modification) and 16 were rejected. Competencies in the social, spiritual, cultural, and ethical/legal aspects of care domains were relatively more likely to be accepted compared with those in structure and processes of care, physical care, psychological care, and care of patient at the end of life. CONCLUSION: The 41 consensus-derived competencies for generalist-level palliative social work may inform the development of training curricula and standards for high-quality care.

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.

Social Work Involvement in Advance Care Planning: Findings from a Large Survey of Social Workers in Hospice and Palliative Care Settings.

BACKGROUND: Few data are available describing the involvement and activities of social workers in advance care planning (ACP). OBJECTIVE: We sought to provide data about (1) social worker involvement and leadership in ACP conversations with patients and families; and (2) the extent of functions and activities when these discussions occur. METHODS: We conducted a large web-based survey of social workers employed in hospice, palliative care, and related settings to explore their role, participation, and self-rated competency in facilitating ACP discussions. Respondents were recruited through the Social Work Hospice and Palliative Care Network and the National Hospice and Palliative Care Organization. Descriptive analyses were conducted on the full sample of respondents (N = 641) and a subsample of clinical social workers (N = 456). Responses were analyzed to explore differences in ACP involvement by practice setting. RESULTS: Most clinical social workers (96%) reported that social workers in their department are conducting ACP discussions with patients/families. Majorities also participate in, and lead, ACP discussions (69% and 60%, respectively). Most respondents report that social workers are responsible for educating patients/families about ACP options (80%) and are the team members responsible for documenting ACP (68%). Compared with other settings, oncology and inpatient palliative care social workers were less likely to be responsible for ensuring that patients/families are informed of ACP options and documenting ACP preferences. CONCLUSIONS: Social workers are prominently involved in facilitating, leading, and documenting ACP discussions. Policy-makers, administrators, and providers should incorporate the vital contributions of social work professionals in policies and programs supporting ACP.

Ashley's case: the ethics of arresting the growth of children with serious disability.

This article analyzes the justifications and ethics of attenuating the growth of children with serious disability. It considers the case of Ashley, a child with profound developmental and cognitive disabilities whose growth was attenuated through high-dose estrogen treatment and surgery. The goals of Ashley's parents and physicians were to keep her small, thereby making it easier for her parents to care for her at home. Perspectives supporting and opposing growth attenuation are presented. It is suggested that community resources and supports, rather than medical strategies, are necessary to address the social challenges of community living.

Disability perspectives on health care planning and decision-making.

BACKGROUND: Despite the needs for people with disabilities to plan for times of serious illness in order to receive good end-of-life care and to have their wishes respected, this community has often been overlooked in the extensive research, programs, and policies regarding advance care planning and palliative care. This article reviews the literature addressing the significance of disability on health care decision-making, advance care planning, and end-of-life care. Special attention is provided to assessing the life values or preferences of persons with intellectual disability with limited decisional capacity. Recommendations are suggested for more inclusionary dialogue, research to better inform palliative care services, and new planning models for individuals with limited capacity.

Lesbian and gay elders and long-term care: identifying the unique psychosocial perspectives and challenges.

This qualitative study of lesbian and gay elders seeks to identify the psychosocial challenges this community faces regarding long-term care. Two focus groups were conducted among 16 gay elders in community and long-term care settings. Participants reported fear of being rejected or neglected by healthcare providers, particularly personal care aides; fear of not being accepted and respected by other residents; fear of having to go back into the closet if placed in long-term care; and a preference for gay-friendly care. Participants suggested staff training to promote acceptance and respect for gay people, and favorably perceived gay-specific and gay-friendly living arrangements.

Providing palliative care to people with intellectual disabilities: services, staff knowledge, and challenges.

People with intellectual disabilities require access to compassionate, quality, and effective palliative and end-of-life care when facing serious, life-limiting illness. This study was designed to document the degree to which hospice and palliative care services were provided to New Jersey residents with intellectual disabilities, and the challenges in providing this care. Surveys were designed to assess the provision of hospice and palliative care services to this population, staff knowledge and training needs, experiential and communication challenges, and financial concerns. Twenty-two hospice and palliative care providers, 50 group home/community living sponsors, and 5 state-run developmental centers completed this survey. Twenty-two percent of group home sponsors and 60% of developmental centers report ever using hospice services, with 1-2 residents using hospice care during the previous year. Ninety-one percent of palliative care providers reported providing services to the community, with hospices providing care to approximately 3 individuals during the prior year. Challenges to providing services included: low levels of knowledge about palliative care among residential providers; need for knowledge about people with intellectual disabilities among hospice providers; communication difficulties; and costs concerns regarding reimbursement, staffing, and training. Results support the need to increase awareness and knowledge about intellectual disabilities, including provider communication skills; promote hospice outreach to residential providers; and develop innovative services and policies that address the challenges in caring for this population.

Promoting effective social work policy in end-of-life and palliative care.

Policy developments in the health care arena in general, and in end-of-life and palliative care in particular, strongly influence the practice environment for the delivery of hospice and palliative care services and the diverse roles of social work practitioners. This article analyzes policy developments in two crucial areas-ethics and law and disenfranchisement and health disparities. It focuses on the recent social work literature and other key sources and provides recommendations to promote the roles of social workers in ethics consultation, public policy, and advocacy and to integrate better the perspectives and concerns of diverse communities into palliative care practice, education, and policy.