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Disrespectful and inadequate palliative care to transgender persons

Published online by Cambridge University Press:  14 July 2023

Cathy Berkman Open the ORCID record for Cathy Berkman [Opens in a new window] ,
Gary L. Stein ,
Noelle Marie Javier ,
Sean O’Mahony ,
Shail Maingi  and
David Godfrey
Cathy Berkman*
Affiliation:
Graduate School of Social Service, Fordham University, New York, NY, USA
Gary L. Stein
Affiliation:
Wurzweiler School of Social Work, Yeshiva University, New York, NY, USA
Noelle Marie Javier
Affiliation:
Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA
Sean O’Mahony
Affiliation:
Department of Internal Medicine, Rush University Medical Center, Chicago, IL, USA
Shail Maingi
Affiliation:
Medical Oncology, Dana Farber Brigham Cancer Center, South Weymouth, MA, USA
David Godfrey
Affiliation:
Commission on Law and Aging, American Bar Association, Washington, DC, USA
*
Corresponding author: Cathy Berkman; Email: berkman@fordham.edu
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Abstract

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.

Keywords

TransgenderPalliative careDiscriminationHealth disparitiesLGBTQ+
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 1 , February 2024 , pp. 3 - 9
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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