The Institute of Medicine reports lesbian, gay, bisexual and transgender (LGBT) individuals having the highest rates of tobacco, alcohol and drug use leading to elevated cancer risks. Due to fear of discrimination and lack of healthcare practitioner education, LGBT patients may be more likely to present with advanced stages of cancer resulting in suboptimal palliative care. The purpose of this scoping review is to explore what is known from the existing literature about the barriers to providing culturally competent cancer-related palliative care to LGBT patients. This review will use the five-stage framework for conducting a scoping review developed by Arksey and O'Malley. The PubMed, Scopus, PsychINFO and Cochrane electronic databases were searched resulting in 1,442 citations. Eligibility criteria consisted of all peer-reviewed journal articles in the English language between 2007 and 2020 resulting in 10 manuscripts. Barriers to palliative cancer care for the LGBT include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgment, homophobia and mistrust of healthcare providers. Limited healthcare-specific knowledge by both providers and patients, poor preparation of legal aspects of advanced care planning and end-of-life care were underprovided to LGBT persons. As a result of these barriers, palliative care is likely to be provided for LGBT patients with cancer in a deficient manner, perpetuating marginalisation and healthcare inequities. Minimal research investigates these barriers and healthcare curriculums do not provide practitioners skills for administering culturally sensitive palliative care to LGBT patients.
As coronavirus disease 2019 (COVID-19) continues to impact the seriously ill and their families on a global scale, considerations given to marginalized groups amid the pandemic are essential to ensure the provision of high-quality and dignified care. Lesbian, gay, bisexual, transgender, gender-nonconforming, and queer/questioning-identified (LGBTQ+) persons are particularly vulnerable to health inequities across settings, including palliative care and at the end of life. There is a crucial gap in the literature pertaining to palliative care for LGBTQ+ populations during COVID-19. We aim to fill this gap by providing essential health inequity and social support background pertaining to LGBTQ+ persons and practical recommendations for immediate implementation that support inclusive and respectful care for these populations. Using these recommendations is a pragmatic pathway to promote trust, transparency, patient and family engagement, and value concordant care amid the health system strain caused by COVID-19.
Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences.
Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women.
Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated.
Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey.
Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care.
Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.
Le champ des études sur la fin de la vie s’est peu penché jusqu’à maintenant sur la population trans. Pourtant, des études quantitatives mettent en lumière une planification moindre de la fin de vie au sein de celle-ci, comparativement à d’autres minorités sexuelles. Notre revue d’études qualitatives vise à mieux comprendre cette situation et, plus largement, à saisir les préoccupations des personnes trans relativement à la fin de la vie. Les treize publications retenues mettent en évidence leurs inquiétudes concernant les risques d’abus et de manque de respect de la part des professionnels dans les soins et les hébergements de fin de vie, leur isolement et le manque de soutien de leurs proches, l’importance qu’elles accordent au présent au détriment de la fin de vie et leurs craintes de voir leur identité de genre déniée après la mort.
OBJECTIVE: Hospice interdisciplinary team (IDT) providers' attitudes toward sexual and gender minority (SGM) patients and family caregivers impacts quality of care and end-of-life outcomes. This study assessed hospice IDT provider attitudes toward SGM patients and caregivers and identified demographic predictors.
METHODS: Hospice IDT providers (N = 122) completed an adapted 11-item scale measuring attitudes toward SGM hospice patients and caregivers. Descriptive statistics, confirmatory factor analysis, and regression models were conducted.
RESULTS: The hospice-adapted Attitudes Toward LGBT Patients Scale (ATLPS) demonstrated acceptable Cronbach's alpha (0.707). Total scores ranged from 32 to 55 (M = 47.04, SD = 5.64) showing that attitudes were generally positive. Being religious (B=-3.169, p = 0.008) was associated with more negative attitudes, while higher education (B = 1.951, p = 0.002) and time employed in hospice agency (B = 0.600, p = 0.028) were associated with more positive attitudes.
CONCLUSION: This is among the first studies to assess SGM-specific hospice IDT attitudes. Participants had relatively positive attitudes, influenced by religious beliefs, clinical experience, and education. CFA results suggest the need for better instruments to measure this complex construct.
PRACTICE IMPLICATIONS: Education incorporating evidence of disparities, life-course perspectives, and end-of-life experiences of diverse cohorts of SGM patients and families may build on hospice IDT members' experience and training by influencing attitudes, reducing bias and improving competency.
This article will focus on the following objectives specific to end-of-life care for professional case management:
Discuss recent industry topics that influence care processes.
Explore the opioid epidemic's impact on pain management.
Identify terms associated with end-of-life and life-limiting care.
Understand types of advance directives and care defining tools.
Define the purpose of psychiatric advance directives.
Discuss the shifting diagnostic face.
Discuss how inclusion manifests for the lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population.
Explore challenges working through adolescent decision making and treatment.
Review regulation and reimbursement shifts across the industry.
Identify the use of artificial intelligence.
Discuss the value of ethics committees in health care organizations.
Define the Four Cs of Care Considerations.
Identify ethical principles for consideration by the workforce.
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.
With a growing population of transgender-identified elders in the United States, their unique spiritual end-of-life needs are coming to light. This article presents a case study of a hospice volunteer who used skillful means as an artist to help a transgender-identified woman express her spirituality in the last 6 months of her life. After data analysis, 4 themes emerged related to the expression of spirituality by lesbian, gay, bisexual, transgender, and queer (LGBTQ) elders at end of life. The themes that emerged included (1) the human element in advocacy for spiritual care, (2) the importance of safe spaces for reflection and meditation, (3) the importance of skillful means to work with LGBTQ people, and (4) acknowledgement of gender identity as a spiritual need. This case study serves as a springboard to advance research into the end-of-life needs of LGBTQ elders and the ways in which members of the hospice team can support spiritual care and alleviate suffering for this population.
Sexual and gender minorities experience disparities throughout the life course. These are especially detrimental at the end-of-life and can include disenfranchised grief, homophobia and transphobia from medical staff, and forced outing. The best healthcare training approach to ameliorate health disparities is debated. Cultural competency trainings for clinicians have been commonly proposed by major medical institutions and certifying bodies to ameliorate lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) health disparities. However, cultural competency trainings have limitations, including (1) false competence, (2) measurement issues, and (3) ecological fallacy (i.e., assuming individuals conform to the norms of their cultural group). The purpose of this commentary is to describe the limitations of cultural competency training and argue for healthcare systems to implement cultural humility trainings as a way to reduce LGBTQ health disparities at the end-of-life. The strengths of cultural humility training include focus on (1) individuals instead of their cultural groups, (2) self-reflection, and (3) active listening. While there are challenges to implementing cultural humility trainings in the health-care system, we assert that these trainings align with the aims of healthcare systems and can be an essential tool in reducing LGBTQ health disparities. We suggest practical components of successful cultural humility trainings including leadership buy-in, appropriate outcome measurements, multiple training sessions, and fostering a safe reflection space.
The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.