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.
Patients receiving palliative and hospice care experience high levels of functional loss, dependency on activities of daily living, and impairment in mobility. Physical disability affects important aspects of life, oftentimes leading to depression, poor quality of life, increased caregiver needs, increased health resource utilization, and institutionalization. Physical strength, the number of hours spent in bed, and the ability to do what one wants are important indicators of quality of life for patients with cancer and their families. Progressive debility with a sense of being a burden has been cited in the literature as a reason for desiring death among these patients. This perception of increased dependence on others serves as a strong predictor for a patient's interest in the physician aid in dying (PAD). This highlights the desire and willingness of most palliative and hospice care patients to remain physically independent during the course of their disease. Several studies have shown that maintaining the most optimal level of functional ability, especially mobility, for as long as possible is one of the main benefits of rehabilitation in the palliative and hospice care settings. Studies demonstrate that rehabilitation in patients receiving hospice and palliative care can reduce the burden of care for families and caregivers and improve patient's quality of life, sense of well-being, as well as control of pain and non-pain symptoms.
The Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning population, also known as sexual and gender minorities, are an incredibly marginalized and vulnerable population that have been disproportionately affected by the provision, delivery, and optimal access to high-quality medical care including palliative, hospice, and end-of-life care. The long-standing and unique experiences shaped by positive and negative historical events have led to a better understanding of significant barriers and gaps in equitable healthcare for this population. The intersection of both internal and external stressors as well as minority identities in the context of discriminatory political and societal infrastructures have resulted in variable health outcomes that continues to be plagued by economic barriers, oppressive legislative policies, and undesirable societal practices. It could not be more urgent and timely to call upon the government and healthcare systems at large to execute reforms in policies and regulations, engage in cultural competency training, and promote cultural shifts in beliefs, attitudes, and practices that will ultimately recognize, prioritize, and address the needs of this population. After all, health care access is a universal right regardless of personal, social, political, and economic determinants of comprehensive medical care.
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.
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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.