Making Health Care Equality a Reality

 Just as Janice Langbehn, partner Lisa Pond, and their three children were about to board a cruise ship in Miami, Pond suffered an aneurysm, collapsed, and was taken to an area trauma center. Though she and Pond had been together for 18 years they were not legally married, and the hospital, which did not view the Lacey, Wash.–based couple as “real” partners, prevented Langbehn from being at Pond’s bedside while she lay dying.

Charlene Strong of Seattle has a similarly agonizing story. When Kate Fleming, her partner of nine years, was trapped in the basement of their home during a flash flood, Strong risked her own life trying to save her. She then followed the ambulance that rushed Fleming to the hospital but was not allowed in the room until she had managed to track down one of Fleming’s out-of-state family members, who gave consent for Strong to be present as Fleming passed away. Also staggering is the case of Erin Vaught, a transgender woman who says she was ridiculed, called a “he-she,” and denied treatment altogether at a Muncie, Ind., emergency room, even though she had coughed up a large quantity of blood.

The stakes are rarely higher than they are in hospitals — sometimes a matter of life and death — but medical facilities have no standard practice when it comes to something as fundamental as letting patients determine the person they wish to have at their bedside or to make medical decisions on their behalf. Inhumane or bigoted hospital policies have a disproportionate impact on LGBT patients.

For the past four years the Human Rights Campaign, in conjunction with the Gay and Lesbian Medical Association, has sought to battle the inequities in hospital policies as they affect LGBT people. Each year the HRC publishes the results of a survey in which U.S. health care facilities self-diagnose their ability to provide equitable treatment to lesbian, gay, bisexual, and transgender patients and their families as well as LGBT employees.

The most recent Healthcare Equality Index, which was released last June, included data from 116 hospitals and 62 clinics, and yielded the HRC’s list of top performers.

Unfortunately, the report illustrates that while more facilities are striving to provide welcoming and competent care for everyone, America’s hospital system as a whole falls short in meeting the needs of gay patients. Only a small percentage of participating facilities scored positively in all of the survey’s four key measures (patient nondiscrimination, visitation rights, cultural competency training, and employee nondiscrimination), while a large percentage of the facilities — a whopping 70% — failed to include gender identity in their patient nondiscrimination policies.

Fortunately, much has happened since last summer.

“There are few moments in our lives that call for greater compassion and companionship  than when a loved one is admitted to the hospital,” wrote President Obama to Kathleen Sibelius, secretary of the U.S. Department of Health and Human Services, in an April 2010 memo that outlined his view of visitation and decision-making rights of LGBT family members. The memo was inspired in part by the sad story of Langbehn and Pond.

Following a period of public review, Health and Human Services acted on the president’s wishes, and in January federal regulations went into effect that granted patients more control over their medical decisions. More specifically, all hospitals that accept federal money in the form of Medicare and Medicaid are now required to allow patients to designate who can visit them and who is authorized to make key medical decisions on their behalf, regardless of whether that person is a blood relative or legally recognized spouse.

“This policy impacts millions of LGBT Americans and their families. The president saw an injustice and felt very strongly about correcting this and has spoken about it often over the years,” said White House deputy director of public engagement Brian Bond on the White House blog.

For the HHS to establish that discrimination is not only unacceptable but illegal is a major win for LGBT Americans because it’s the first time they have received federal recognition of the fundamental right to choose which loved ones they can lean on during hospitalization.

But these new rules, though a big step forward, do not obviate the aims of the Healthcare Equality Index, including the need for cultural competency training, which involves educating hospital staff on LGBT-specific issues such as terminology, history, and health risks as well as the applicable local and state laws affecting LGBT people in regard to health care. (While it is not mandatory for all employees to take this training, the HRC requires that it be offered to all personnel—from physicians and technicians to administrative staff — in order for the to facility to receive credit.)

Also, says Fred Sainz, the HRC’s vice president of communications and marketing, the new HHS regulations address these LGBT issues only in hospitals. “In the future we want to increase participation by nursing homes, assisted living facilities, hospice, and home health care agencies,” he says. “So there is still a lot of work for the HEI to do.” The index will “continue as a leading resource for health care administrators who want to follow not only the letter of the law but also live up to the spirit of the law.”