Cancer does not discriminate. Whether a patient is gay, lesbian, bisexual or transgender, the care he or she receives shouldn’t be discriminatory either. Yet the March 2011 Institute of Medicine report “The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding,” highlighted disparities in the care LGBT patients receive.
Because of the bias they experience in the healthcare setting, members of the LGBT community tend to seek care at a much lower rate, according to a report conducted by the New York City Public Advocate’s Office. Although some LGBT patients had good experiences when seeking healthcare, the results were uneven enough for the 2008 report to provide a list of recommendations for healthcare practitioners. Cultural competency training of all healthcare practitioners was first on the list.
In a recent announcement, the New York City Health and Hospitals Corporation shared its plan to provide competency training for all 38,000 employees systemwide in a commitment to provide better care for this population, including those with cancer.
Necessary endeavorLiz Margolies, LCSW
According to Liz Margolies, LCSW, founder and executive director of the National LGBT Cancer Network in New York City, the LGBT population is at greater risk for cancer, not as result of difference in physiology, but lifestyle behaviors. “They smoke at nearly twice the national rate and use drugs and alcohol at higher rates,” she said. “Lesbians are less likely to have had a biological child before age 30. They also have high body mass index. Gay men have high incidences of HPV, which is linked to multiple cancers, including anal cancer.”
Margolies’ organization was chosen by HHC to lead its competency training, which consists of 15- to 60-minute curricula anchored by a video, “To Treat Me, You Have to Know Who I Am.” All HHC staff will receive training either during orientation, upon their anniversary each year, or at town hall-like meetings. Using a train-the-trainer style, Margolies already has begun educating those who will be responsible for training HHC’s nurses and other healthcare staff. “We’re starting with department heads,” she said. “The inservices include about 15 people at a time, and they are of mixed disciplines.”
HHC’s Lauren Johnston, RN, MPA, CNAA-BC, FACHE, senior assistant vice president of patient-centered care, and corporate CNE, applauds Margolies’ program. “The video is phenomenal,” she said. “The first time I saw it, I thought to myself, it is exactly what patient-centered care is all about.”
To provide appropriate care, caregivers can’t make assumptions, Johnston said, and they have to ask questions in a comfortable and professional manner. Learning how to ask the appropriate questions in the right way is key.Lauren Johnston, RN
“Staff have to be comfortable asking the right questions so that they in turn make the patient feel comfortable answering,” she said. “To elicit the truth, you have to know what their whole life is like, not just what brought them to the hospital.”
Jacqueline Galloway, RN, BSN, a nurse in Bellevue Hospital Center’s virology clinic, believes the training is a positive step forward. “I think it’s a good change,” she said. “We need to be trained to provide the best possible care for [this population].”
In her work in HIV care, Galloway treats many members of the LGBT community. “LGBT patients do come through our area. Our providers are accustomed to speaking with them, and they in turn assimilate easily into our care,” she said.
Similar to LGBT patients with HIV, those with cancer need to feel comfortable enough to confide in their practitioner. “More often than not, when patients come into an environment where they are respected, they feel comfortable,” Galloway said. “That’s important because it affects whether or not they will adhere to their program and whether they will take their medications.”Sue Pillet, RN
Comfort is extremely important, according to Eleanor Canning, RN, BSN, director of hospice access and program development at the Visiting Nurse Service of New York (N.Y.), and VNSNY nurses are very familiar with the needs of the LGBT community. “We were the largest provider of services for people with AIDS during the time when it was at its peak in New York City,” she said. “We have their trust and respect because we were there when people really didn’t know what was going on.”
Like Margolies’ organization, the Callen-Lorde Community Health Center provides similar training, according to Kevin P. Steffens, RN, MBA, director of nursing at the New York City center. “We have an education and outreach nurse who provides sensitivity training to staff at physician offices, nursing and medical schools and community groups,” he said. The nurse uses a PowerPoint presentation and then allows the group to have a dialogue about it. “Everyone has had different experiences, so the dialogue and training depends upon the level of comfort with LGBT healthcare issues,” Steffens said.
Typically, the groups reach out to Callen-Lorde because of its commitment to the care of this population. However, sometimes center staff will contact a facility to offer training. “If a patient has had a bad experience, they know they can tell us about it and we will reach out to the facility to see what can be done,” Steffens said. “That has worked favorably as well.”
Being able to turn to an organization LGBT patients know will help them receive the best care is essential, Canning agreed. “This group tends to look for systems that are sponsored by LGBT organizations because that playing field is familiar,” she said. “They don’t have to worry that whomever they see for healthcare will be fair.”
Clinical implications of trainingJudith De Groot, RN
Training like that at HHC can be a boon for LGBT patients with cancer, once staff knows the appropriate questions to ask. For example, a transgender patient who has had her breasts removed still will need cancer screenings.
“Although they may disassociate with those body parts after surgery, there is still some breast tissue left,” said Judy De Groot, RN, MSN, AOCN, facilitator of the Oncology Nursing Society’s Gay Lesbian Bisexual Transgender Focus Group and lead nurse navigator at Penrose Cancer Center in Colorado Springs, Colo.
“Likewise, men who transition still have a prostate, so staff must make sure to perform a thorough checkup.”
Practice what you preachJacqueline Galloway, RN
Although sensitivity training is important for staff, facilities must openly practice what they preach to staff. De Groot has been helping facilities do just that through her lectures at the society’s annual meetings. She has held three different educational sessions during the past several years that address the LGBT population and the issues it faces.
The sessions were as basic as providing an overview of terminology such as gay, lesbian, queer and transsexual, and as complicated as discussing some of the legal documents LGBT patients need to have in place to ensure their wishes are met, such as medical power of attorney, living wills and power of attorney.
“Who has the right to make the decisions must be in writing, otherwise insurance forms and any kind of legal thing will default to family,” De Groot said.
The sessions also provided tips oncology nurses could take back to their facilities on being more “gay friendly.” The tips include putting a rainbow sticker in their window, offering magazines that address LGBT issues in the waiting room, printing brochures that feature same-sex and multiethnic couples and families, and including more information — such as “partnered” not just single or married — on intake forms. “I would consistently ask an NP I knew to add ‘partnered’ to her intake form,” De Groot said. “I would always change it to say ‘partnered,’ and after about a year she just made the change.”Liz Margolies, left, and NYCHHC president Alan D. Aviles, at podium, announce the health system’s plan to provide cultural competency training to all 38,000 of its employees.
Institutional changes such as check boxes on an intake form are not readily made. “In general, it’s not found out there,” said Sue Pillet, RN, CPNP, CPON, an advanced practice nurse for The Cancer Institute of New Jersey in New Brunswick. “Every institution has its own form that primarily includes single, married, etc.”
Many institutions have just not added those extra choices yet, which may make LGBT patients believe the facility is not LGBT friendly and subsequently they won’t get the best care. “If you don’t give them the option, then they think they don’t have the option,” Pillet said. Likewise, providing same-sex brochures may not be on the marketing department’s radar, but not intentionally. “It’s the sort of thing that doesn’t occur to you as being wrong,” Pillet said.
Although HHC is LGBT friendly, it hasn’t changed any of its forms. “We are not there yet,” Johnston said. “However, we have long-standing policies that work with families in terms of advance directives and hospital visitation.”
Advance directives is one area that can be especially tricky, Canning said. “We find this community may not have communicated to their families exactly who they live with or what the depth of that relationship really is,” she said. An advantage is the majority of VNSNY’s patients are cared for in their own homes so they feel safer and more at ease talking about their choices. “In hospice, the conversation starts early on about who [the patient] considers to be family,” she said. “The recent legalization of same-sex marriage in New York state will make it even easier to establish next of kin.”
But not all practitioners use sensitivity when caring for the LGBT community. “I think that happens, and if I encountered [insensitivity], I would first take care of the patient and then sit down with the employee and possibly a supervisor,” Calloway said.
De Groot agreed. “The first thing people need to do is self-examine, and that’s a hard thing to do,” she said. “You have to deal with your own biases first.”