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Disparities in Care: LGBT Patients Often Are Vulnerable, Marginalized

July-August 2015

BY: LINDA M. CANESTRARO

Nancy Stahl

Jeff Doucette, DNP, RN, recalls his phone conversation with a transgender woman who was about to undergo routine surgery at a Bon Secours Health System hospital. "The patient was nervous about the procedure, but she was also concerned about how she would be treated as a person," said Doucette, the hospital's vice president of patient care and chief nursing officer. "A month later, she contacted me to say thank you for taking her concerns seriously and for preparing the staff ahead of her visit. She said we had met her needs both physically and emotionally."

Caregivers' awareness of even subtle biases they may have can make all the difference in the world to a patient, he said.

LGBT patients often are overlooked as a group that faces disparities in care, according to the Joint Commission. However, like other populations identified as at-risk or disadvantaged, the lesbian, gay, bisexual and transgender community has faced stigma, lack of cultural competence and insensitivity to their unique needs.1

The numbers of LGBT persons in the United States aren't easy to determine. A brief published in 2011 by Gary J. Gates of the Williams Institute School of Law in Los Angeles2 combines information from several population-based surveys to estimate LGB American adults as 3.5 percent of the population and transgender adults as 0.3 percent. (Federal sources for population estimates, such as the decennial census, do not include direct questions on sexual orientation or gender identity.)

In numbers, according to the brief, this translates to 8,038,780 LGB adults and 697,529 transgender adults — together, almost the population of New Jersey.

The Healthcare Equality Index (HEI), produced annually since 2007 by the nonprofit Human Rights Campaign in Washington, D.C., is compiled from responses to an online survey made available to hospitals nationwide. The result is a tool to help health care facilities provide people in the LGBT community with equitable, knowledgeable, sensitive and welcoming health care, free from discrimination, according to Tari Hanneman, associate director of the HRC Foundation Health and Aging Program and author of the HEI 2014 report.3

"The Healthcare Equality Index assesses how well the participating facilities are serving the needs of LGBT patients and their families, as well as the facilities' LGBT employees," said Hanneman. "It's used as a benchmarking tool for hospitals who want better, more equitable care for their LGBT patients."

In 2012, Bon Secours Health System, based in Marriottsville, Maryland, was the first Catholic health system in the country to be named an HRC Foundation Leader in LGBT Healthcare Equality. The health system, which has 14 majority-owned acute-care hospitals in Virginia, Kentucky, South Carolina, Maryland and New York, was a recipient in 2013 and 2014, as well.

Darren Binder has led Bon Secours' focused efforts to eliminate the barriers that LGBT patients may encounter in obtaining health care, as well as those that their families and loved ones may face.

"The values of equity and inclusion in the Healthcare Equality Index go hand-in-hand with our Catholic affiliation," said Binder, vice president and deputy general counsel for Bon Secours Health System and a member of its Diversity Council. "Our policies are aligned with our vision to ensure that LGBT patients and their families are welcomed and given care free of discrimination in all our facilities."

"Barriers to care exist for a whole host of people, and for many different reasons," said John Wallenhorst, PhD, senior vice president of mission and ethics and ethicist for Bon Secours Health System. "As part of the Catholic health ministry, we honor the dignity of every person, and we are committed to the common good. We strive always to act in a way that is consistent with our identity and to serve all persons with care and compassion."

PATTERNS OF DISCRIMINATION
A landmark study published in 2010 by Lambda Legal, When Health Care Isn't Caring, Lambda Legal's Survey of Discrimination Against LGBT People and People with HIV,4 provides anecdotal evidence of barriers to care for LGBT Americans, specifically "patterns of discrimination and substandard care" experienced with medical providers throughout the United States. Based in New York, the legal, education and advocacy group works on behalf of the LGBT community and those living with HIV.

The survey documents patterns of reported discriminatory behaviors, based on the responses of nearly 5,000 adults identified as LGBT or living with HIV. The findings show that 56 percent of LGB respondents reported experiencing some type of discrimination in health care, in contrast to 70 percent reported by transgender respondents (includes those whose appearance or behavior is gender-nonconforming). The study raises additional concerns about members of the LGBT community who may avoid or delay receiving health care because they fear discrimination.

The anecdotes from transgender and gender-nonconforming persons participating in the survey are sobering: being misidentified in terms of gender, being subjected to inappropriate exams, having privacy violated (for example, revealing gender status unnecessarily, leading to the patient becoming an object of curiosity), harassment and being prohibited from using restroom facilities.

VISITATION POLICIES
When the Patient Protection and Affordable Care Act went into effect in 2010, it included protections that prohibit sex discrimination in any hospital or health program receiving federal funds. Preceding this legislation, evidence of disparate treatment of some Americans — including LGBT persons — was mounting, leading to heightened awareness of biases in health care and their potential to do harm.

In November 2010, the Centers for Medicare and Medicaid Services finalized its "Conditions of Participation" for all Medicare and Medicaid participating hospitals, requiring written policies regarding patient visitation rights. Hospitals are required to inform patients of their right to choose their own visitors during a hospital stay — including a same-sex domestic partner — and hospitals are prohibited from restricting visitation rights based on such factors as sexual orientation and gender identity.5

As an organization with CMS-deeming authority, the Joint Commission has aligned its hospital standards with the CMS requirements. Recognizing that discrimination against LGBT persons can be harmful to their health, the Joint Commission in July 2011 began requiring that organizations accredited under hospital and critical access hospital programs prohibit discrimination based on factors including sexual orientation and gender identity or expression. It also established a requirement that facilities allow visitation without regard to sexual orientation or gender identity.

On June 14, 2011, Bon Secours Health System's board of directors approved a revision to the health system's Code of Conduct6 that added "gender identity" (sexual orientation already was covered) to its patient and employee nondiscrimination provisions, in accordance with the law, thus reinforcing the mission "to bring compassion to health care and to be good help to those in need." The Code of Conduct encourages employees and others to voice concerns or ask questions on any number of topics by calling the Values Line, a forum that respects the confidentiality of the callers.

CARING FOR VULNERABLE PEOPLE
Bon Secours' Strategic Quality Plan, which is updated every three years, is both the starting point and reference point for building policies and practices that are diverse and inclusive. The 2013-2015 plan is grounded in five goals that include bringing communities to wholeness, ensuring extraordinary care, and expressing Catholic identity. Among the eight core values at the heart of Bon Secours' mission are respect and justice — the two most often cited in the context of helping vulnerable people.

"Respect shows our commitment to treat all people well, based on our belief that each person has equal dignity and is made in the image and likeness of God," said Sr. Anne Lutz, CBS, Bon Secours' executive vice president of sponsorship. "Justice supports and protects the rights of all people and promotes the right to have needs met with human dignity."

Sr. Lutz draws from history, tradition and the charism of the Sisters of Bon Secours to explain the health system's vision to build health and social justice for all persons, pointing out that the 12 women who started the Order of the Sisters of Bon Secours in the early 1800s were particularly moved by the plight of the sick poor.

"It was during the French Revolution," she said. "Their willingness to care for all people, regardless of their beliefs or social status, was considered a radical idea at the time. Our mission today continues to give good help to those in need, especially the vulnerable and those who are marginalized by society."

STEPS ON THE JOURNEY
"Achieving leadership status in the Healthcare Equality Index means meeting certain foundational benchmarks for equitable and inclusive care," Hanneman said. "To qualify, the participating facilities must include LGBT-inclusive language in their patient and employee nondiscrimination policies, guarantee equal visitation for same-sex partners and parents, and educate key leaders and staff on health care issues that exist for LGBT people." Hanneman stressed, "This is what all hospitals concerned with diversity and inclusion for all their patients should strive for."

Education and coaching are two practices Bon Secours has in place to help employees address issues of bias in the workplace.

"One of the benefits of the Healthcare Equality Index is the exceptional LGBT education and training programs from the HRC Foundation that come with survey participation," said Gloria Goins, Bon Secours' chief diversity and inclusion officer. "The training is mandatory for key executives, but we've had many employees access these programs on our intranet just because they want to be better caregivers."

"In addition to helping organizations meet CMS and Joint Commission requirements," said Hanneman, "the HRC's education offerings cover a range of topics, including ways to provide optimal care to LGBT patients and best practices to minimize risk and maximize quality, safety and satisfaction. The HEI Resource Guide, an accompaniment to the HEI survey, is an invaluable source for this information."

Doucette described the LGBT education offered through the HRC Foundation as exceptional.

"I learned things I had never thought about," he said. "The training clarified a lot of misconceptions and misperceptions — things like asking transgender patients the gender they identify with; the name they prefer to be called; if they are to have a roommate, do they prefer a male or female."

"Five years of important work involving all of our hospitals got us here," said Binder, noting Bon Secours' full compliance with federal and other requirements, as well as meeting the HEI leadership status criteria. "We recognize, particularly as a large health system, that we'll always have more learning to do to increase awareness and improve our processes with respect to the needs of the LGBT community."

RESPECTING TRANSGENDER PATIENTS
Further evidence of discrimination against transgender Americans came about in 2011 when the National Gay and Lesbian Task Force and the National Center for Transgender Equality released their report, Injustice at Every Turn: A Report of the National Transgender Discrimination Survey.7 In it, the results of a survey of 6,000 transgender Americans showed that 19 percent reported being refused health care due to their transgender or gender-nonconforming status. In other findings, 28 percent had postponed necessary health care when sick or injured, and 33 percent had delayed or had not sought preventive care because of health care discrimination based on their transgender status. Forty-one percent of the survey respondents reported at least one attempt at suicide.

Kelly Stuart, MD, is one of Bon Secours' "go-to" people for clinical and organizational ethics. A health care ethicist and board-certified pediatrician/neonatologist in the Bon Secours Richmond Health System, she previously had worked in private practice, as well as abroad in the U.S. military, specializing in the care of seriously ill newborns. Her interest in theology and ethics led her in another direction.

"As a doctor, I found myself in situations that could have used more medical discernment," Stuart said. "What I observed was that the demands and constraints placed on medical providers often left them with little time or opportunity to consider cases involving complex medical issues."

When a transgender woman arrived by ambulance at a Bon Secours hospital following a suicide attempt, Stuart was called to her bedside to talk with the patient.

"I was called to help empower her," said Stuart. "We treated her with human dignity and respect, tried to help her in her despair and tried to help her through her loneliness. We have to see the innate dignity in every human being, and we have to meet the call to serve them on their terms."

Dedicated to helping patients with complex cases, Stuart pursued advanced degrees in public health, theological studies, and negotiation and dispute resolution. She continues to study how the religious and cultural values of patients and their families can inform regimens of care.

The disparities in the treatment of LGBT Americans, largely brought to light from studies conducted within the last decade, have strengthened Bon Secours' resolve and commitment to serve all patients with equal treatment.

"We have an obligation to enhance our interactions with patients and to be attentive to their health concerns in a way that honors their unique gifts, perspectives and histories," said Wallenhorst. "Helping our co-workers become more culturally competent is an important part of what we do. While no one can guarantee that care given to patients is rendered totally without bias, we are doing everything we can to eliminate bias from the workplace."

"We really need to see each other as fully human," added Stuart. "We're called to serve each other, recognize each other's vulnerability … everyone is valuable in the eyes of God."

LINDA CANESTRARO is a freelance writer covering general health care topics and issues. She lives in Baltimore.

NOTES
  1. The Joint Commission, Advancing Effective Communication, Cultural Competence and Patient and Family Centered Care for the Lesbian, Gay, Bisexual and Transgender (LGBT) Community: A Field Guide (Oakbrook Terrace, Illinois: The Joint Commission, 2011). www.jointcommission.org/lgbt/default.aspx.
  2. Gary J. Gates, How Many People Are Lesbian, Gay, Bisexual, and Transgender? (Los Angeles: The Williams Institute, UCLA School of Law, April 2011). williamsinstitute.law.ucla.edu/wp-content/uploads/Gates-How-Many-People-LGBT-Apr-2011.pdf.
  3. Tari Hanneman, HEI 2014 Healthcare Equality Index: Promoting Equitable and Inclusive Care for Lesbian, Gay, Bisexual and Transgender Patients and Their Families (Washington, D.C.: Human Rights Campaign Foundation, 2014) http://hrc-assets.s3-website-us-east-1.amazonaws.com//files/assets/resources/HEI_2014_high_interactive.pdf.
  4. Lambda Legal Defense and Education Fund, When Health Care Isn't Caring, Lambda Legal's Survey of Discrimination against LGBT People and People with HIV, Health Care Fairness Survey spring/summer 2009. (New York, New York, 2010). For more information on the national Health Care Fairness Survey and to view the original survey, visit www.lambdalegal.org/health-care-fairness.
  5. Centers for Medicare & Medicaid Services, Code of Federal Regulations, for hospitals: 42 CFR § 482.13(h)1-4; for critical access hospitals: 42 CFR § 485.635(f)1-4.
  6. Bon Secours Health System, Code of Conduct: A Foundation for Right Relationships, Feb. 2013.
  7. Jaime M. Grant et al., Injustice at Every Turn: A Report of the National Transgender Discrimination Survey. (Washington, D.C.: National Center for Transgender Equality and National Gay and Lesbian Task Force, 2011). http://transequality.org/PDFs/NTDS_Report.pdf.



Disparities in Care-LGBT Patients Often are Vulnerable Marginalized

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