3 results
Disrespectful and inadequate palliative care to transgender persons
- Cathy Berkman, Gary L. Stein, Noelle Marie Javier, Sean O’Mahony, Shail Maingi, David Godfrey
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- Journal:
- Palliative & Supportive Care / Volume 22 / Issue 1 / February 2024
- Published online by Cambridge University Press:
- 14 July 2023, pp. 3-9
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- Article
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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.
MethodsA 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.
ResultsOf 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 resultsThese 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
- Cathy Berkman, Gary L. Stein, David Godfrey, Noelle Marie Javier, Shail Maingi, Sean O’Mahony
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- Journal:
- Palliative & Supportive Care / Volume 21 / Issue 5 / October 2023
- Published online by Cambridge University Press:
- 12 July 2023, pp. 782-787
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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.
MethodsA 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.
ResultsThere 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 resultsThese 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.
3 - Cancer pain: prevalence and undertreatment
- from SECTION I - MECHANISMS AND EPIDEMIOLOGY
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- By Sean O'Mahony, Albert Einstein College of Medicine
- Edited by Eduardo D. Bruera, University of Texas, M. D. Anderson Cancer Center, Russell K. Portenoy
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- Book:
- Cancer Pain
- Published online:
- 08 October 2009
- Print publication:
- 23 June 2003, pp 38-48
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Summary
Introduction
Today, for every death caused by cancer there are two caused by infection and parasitic infestation. It is projected that this number will reach parity by 2015. Most of this increase will occur in the developing world, where 55%–60% of the world's cancer patients reside, and the majority of patients will present for palliation until primary prevention programs are in place. Palliative care is not available to eight out of nine cancer patients in the developing world (1).
Cancer pain affects 17 million people worldwide. Its prevalence increases with extent of disease. Its type, location, and intensity vary with tumor type, spread of disease, and disease treatments (2–6). Prevalence rates of 30%–40% are reported for patients receiving active treatment; these increase to 70% to 90% for patients with advanced cancer (7). The National Hospice Report of 1754 patients with advanced cancer demonstrated that only 25% of patients reported persistent pain within 48 hours of death because only 26% of the patients studied could use the assessment tool included in the study (8). This statistic may exemplify a tendency to underestimate pain prevalence in this group. The unexpectedly low estimates of pain prevalence in this population may relate to the high prevalence of cognitive impairment. Other studies observe pain prevalence rates ranging from 12%–99% in the last week of life, with greater than 30% prevalence in seven of nine studies assessed. This variability may relate to the wide variety of scales used to report pain (9).
Chronic cancer pain may occur in relation to disease progression, a complication of the illness or its treatment, or conditions unrelated to the patient's cancer.
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