Going to the hospital, or seeking any kind of medical care, can be a stressful experience, and an important part of a caregiver’s job is to try to make patients feel as comfortable as possible.
It’s easier said than done, though, and the challenges can come in many forms — even something as seemingly innocuous as the basic information forms hospitals and doctors use to compile data on patients.
That’s where Jennifer Aleah Nesteby, the director of LGBTQ services for Cooley Dickinson Health Care, comes in. Nesteby, who had previously worked with Baystate Health primarily in Springfield, has filled a new position with Cooley Dickinson that’s designed to improve access to physical and mental health care for lesbians, transgender people, and others with different sexuality or gender identity.
Working out of Northampton Family Practice, an Atwood Drive office of medical practitioners affiliated with Cooley Dickinson Hospital, Nesteby does both clinical and administrative work. Aside from seeing about 30 to 35 patients a week as a family practitioner, she’s working on several fronts to revamp CDH’s approach to data collection so that LGBTQ patients can be properly identified once they’re admitted for care.
Nesteby, who has a masters degree in nursing with a specialization in transgender and LGBTQ health, says the kinds of forms used in CDH and other hospitals generally don’t provide a means for allowing, say, a transgender person who identifies as female to use her female name, rather than a male name given at birth.
And given that a patient may see a number of other staff before finally getting examined by a doctor, it’s easy for misinformation to be passed up the chain, she says.
Doctors who see dozens of patients a day may not be able to tell from a glance at a chart “that a patient whose birth name is Bob Smith now goes by Roberta,” said Nesteby. “And that can make for an uncomfortable experience.”
For people already nervous about being in a hospital or medical setting, she notes, it can give the impression a caregiver is detached and not fully aware of their circumstances.
“A good first step,” said Nesteby, “is making sure providers are respectful of a patient’s identity, that they use the proper name of the person and the appropriate pronoun in some cases.”
That’s an approach Cooley Dickinson has been working to improve in recent years, says Joanne Marqusee, the hospital’s president and CEO. After Marqusee came aboard in 2014, the hospital established an equity and inclusion council that addresses issues of concern for LGBTQ patients. Nesteby’s appointment, which began in December, is designed to take things further, Marqusee said.
“We’re really committed to having an open, welcoming environment for all of our patients, including the LBGTQ community, which is a significant part of our population.” she said. “Aleah recognized that we needed more systems in place, and we’re following her lead.”
Nesteby, 39, grew up in southern California and first began contemplating a career in medicine when she attended Antioch College in Ohio, where she majored in women’s health and took premed classes. But though she thought about going to medical school, she says, she was drawn more to the idea of primary or family care.
“Nursing felt like a more natural fit,” she said.
Nesteby’s gender identity is female though she identifies sexually as queer, a term that, very broadly, recognizes that gender and sexual identities can be fluid. She became increasingly drawn to issues of LGBTQ health following college, when she lived in San Francisco for five years. There she worked in a number of public health positions, including a stint with Planned Parenthood and as an HIV counselor.
During her time in the Bay area, from the late 1990s into the early 2000s, she also made friends with people who were transgender. They told her that not only did they have trouble finding doctors who were familiar with medical needs, sometimes they had difficulty even finding doctors who would see them.
“Some providers will say ‘I can’t do that’ when it comes to LGBTQ patients because of their own discomfort level,” Nesteby said.
Her experience in California prompted Nesteby to get her master’s in nursing at the MGH Institute of Health Professions in Boston, a school affiliated with Massachusetts General Hospital. She specialized in transgender and LGBTQ health, and following graduation began working with those patients at Baystate Health, where she served for about a decade.
Over the years, Nesteby also has led workshops and training programs around the country on LGBTQ health issues.
Her job with Northampton Family Practice and CDH also includes talking with staff about LGBTQ issues — as well as to assess how staff members who are themselves LGBTQ feel they’re treated at work.
As Nesteby sees it, there are two distinct issues at play with the LGBTQ community when it comes to health care.
In some cases, most notably with transgender patients or those contemplating making a transition, there are physical concerns. Taking hormones to change one’s gender, for instance, can lead to side effects, Nesteby says. And reproductive matters, for instance, are handled differently for a lesbian couple than for a straight couple.
Then there’s the issue of addressing patients by their chosen names and sexual identity. In some cases, this means using plural pronouns, or gender-neutral pronouns like “ze” or “hir,” in place of “he” or “she.”
“It’s basically an issue of respect,” said Nesteby. But in a medical setting, she adds, it can trigger a whole lot of assumptions and other things about a patient.
There is also a concern that members of the LBGTQ community may fail to seek health care simply for fear of being stigmatized in a doctor’s office.
Nesteby, who primarily did clinical work at Baystate, says she enjoys being able to eliminate this worry for her patients. Though the Valley is generally a welcoming place for LGBTQ people, she says, she’s surprised there aren’t more medical resources directed specifically to them.
“I think the assumption has kind of been there’s no need for specialized services, because it is a welcoming place,” she said. “Some people will say, ‘Do you really need a gay doctor?’ Well, in some cases, actually you do.”
Marqusee, the CDH president, agrees. The hospital does regular assessments of its work with patients — it’s called a Community Health Improvement Plan (CHIP) — and the most recent one indicated a need to improve access to care for LGBTQ patients. It wasn’t that staff with CDH and its affiliated practices were making those patients unwelcome, Marqusee says, but simply that they needed to become more aware of LGBTQ concerns.
“We worked with a lot of focus groups — family groups, transgender groups, lesbian groups — and we were also very pleased to see that our staff were excited about learning more about working with (the LGBTQ community),” Marqusee said.
She also said the hospital has been changing over to unisex bathrooms and is now explaining in its marketing materials to patients why they’re seeking more detailed personal information, such as sexual orientation, current gender and birth sex.
Nesteby’s work to introduce wider options for patient identification within CDH’s recordkeeping system — there are certainly some “systemic hurdles,” she says — will become part of the hospital’s larger plan to open an electronic medical records system later this year, Marqusee says, one that’s designed to enhance coordination, reduce duplicate testing and let patients access their own information.
Marqusee says she can appreciate the importance of being addressed by the right name when you’re receiving medical care. Her husband was in CDH for a procedure last year, she says, and for some reason staff at first referred to him as John — his middle name — rather than Larry, his first name.
“It was odd, a little disconcerting,” she said. “It’s one of those basic things you want to get right. That’s what we’re committed to.”
Steve Pfarrer can be reached at spfarrer@gazettenet.com.