Gary L. Stein

Original Research: Physician–Patient Relationships Among the Lesbian and Gay Community

Objective: To document the concerns, perceptions, and experiences gays and lesbians bring to the physician–patient relationship, including their perspectives related to disclosure of sexual orientation. Design: Completion of a 64-item survey instrument. Setting: Participants were recruited through community-based health care and social service organizations serving the lesbian and gay community. Subjects: 575 lesbians and gay men, primarily from the New York metropolitan area. Measurements: Responses to questionnaire consisting of 64 scaled, multiple choice, and open-ended questions. Results: Most (87%) reported that their primary health care provider gives them the same quality of care as heterosexual patients, treats them with respect equal to heterosexual patients (87%), and is sensitive to gay and lesbian concerns (71%). Although 70% disclosed their sexual orientation to their provider, only 29% were asked their sexual orientation by their provider. Among reasons for nondisclosure, 47% were concerned about bad reaction or treatment. A sizable minority (17%) avoided or delayed seeking health care because of reasons having to do with their sexual orientation. Conclusions: The data demonstrate significant problem areas in physician-initiated communication about sexual orientation; in concerns about antigay discrimination in health care, insurance, and employment; and in avoidance of health services. It is hypothesized that these results represent a baseline for the most favorable health care environments for gays and lesbians. This study also highlights the importance of training medical students and clinicians to communicate better with patients, conduct in-depth sexual and family histories, and consider issues related to sexual orientation and homophobia, including identifying and confronting personal and institutional bias.

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.

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.

Educating Gerontologists for Cultural Proficiency in End-of-life Care Practice

An educational program was developed to train practitioners to provide care for patients and families that are responsive to cultural concerns. The aim was to increase knowledge and improve attitudes toward providing culturally proficient and culturally sensitive care for patients and families facing life-threatening illnesses. The program consisted of six half-day sessions on key areas in end-of-life care practice. The modules integrated and infused content related to ethnically and culturally diverse populations in a comprehensive training format. Evaluation results suggested that the program was successful in increasing participant knowledge and attitudes towards cross-cultural interdisciplinary practice of end-of-life 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.

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 Ashleys 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.

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, Masters 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.