Jennifer Capasso, a 42-year-old transgender woman, figured there was a good chance she would be dead within 18 months. Since her diagnosis of metastatic rectal cancer, her life had become a succession of treatments and surgeries as more tumors were found. On her liver, and her lungs, and her large intestine, and again on her lungs.
At her apartment in Long Island City, Queens, she read cancer research papers and estimated her chances of survival, updating the odds after each scan, each tumor, each treatment. She tried to remember exactly what her doctors had said, and the tone they had used.
It frustrated her that she was unconscious at the most crucial moments — as the surgeon removed each cancerous mass. What if the surgeon said something important, a stray comment that no one bothered to tell her about after the anesthesia wore off? She decided to record her next surgery, on March 7, 2022, at Memorial Sloan Kettering Cancer Center, the renowned Manhattan hospital.
“I wanted to know what’s going on,” she recounted. She turned on the audio recorder on her phone before the anesthesia hit. “Knowledge is power.”
The surgeon removed part of her lung. She did not get around to playing the recording until a few weeks later. Though the audio was muffled, she could follow some of what the surgical team was saying before the procedure began. Someone was going out for coffee — did anyone want something from Starbucks? The conversation then shifted.
“ — still has man parts.”
It seemed to Ms. Capasso that they were talking about her genitalia.
On the recording, the health care workers express a variety of opinions about transgender identity more generally. “Not that it’s not right, but — ” one person can be heard saying. “I don’t get any of it,” another says.
And in the middle of the conversation, one person suggests updating Ms. Capasso’s medical file. “Yeah, it needs to say ‘male,’” the person says.
Ms. Capasso said it appeared that hospital staff had in fact changed her electronic medical records, all while she was unconscious.
With her records now marked “M” for “male,” some hospital staff members called her “sir” during weekly appointments for blood draws. Others made a big deal about her being transgender. One person, perhaps taunting her, perhaps trying to be supportive, said things like “Yes, queen” — also unwelcome, Ms. Capasso said.
Ms. Capasso said that when she asked hospital administrators to switch the “male” designation back to “female,” she received a surprising answer: It couldn’t be done, not anytime soon. She recounted the interaction in court papers, part of a lawsuit she filed in March in State Supreme Court in Manhattan accusing the hospital of discrimination. Ms. Capasso’s lawyers shared the surgery recording with The New York Times.
The hospital, in its own court filings, has denied discriminating against Ms. Capasso and suggested that Ms. Capasso’s “secret” recording invaded the privacy of its health care workers. The hospital denies changing Ms. Capasso’s sex designation in medical records and “denies that plaintiff has been misgendered and misidentified in all of her records since 2022.” In response to questions from The Times about Ms. Capasso’s lawsuit, Memorial Sloan Kettering said in a statement that it “does not comment on ongoing litigation.”
Ms. Capasso said that long before she made the recording, she had experienced discriminatory treatment at the hospital.
The year before, during an endoscope exam of her rectum and colon, the colorectal surgeon kept referring to Ms. Capasso as “he” when mentioning her to other medical workers, Ms. Capasso said in an interview.
It was, she said, among the worst interactions she had experienced as a trans woman in years, resurrecting old anxieties.
Two Medical Journeys
Ms. Capasso began her gender transition in 2015, in her mid-30s. She formed a tight circle of friends, and was dating. Life made more sense to her.
And then, in 2019, she was diagnosed with cancer.
Over the years that followed, Ms. Capasso was on two medical journeys: one, at Memorial Sloan Kettering, to keep death at bay; the other, with a plastic surgeon’s help, to look more feminine. Starting in 2021, she underwent a half-dozen procedures to feminize her face.
Her brow ridge was sanded down. Her orbital bone was shaved to give her eyes an upward tilt. Her square chin was softened. There were cheek implants. Changes to her nose, too.
“I needed radical surgical intervention,” she said. And she wanted it fast. The clock was ticking, maybe not for much longer.
“I wasn’t going to die looking like the way I looked, especially getting treated the way I was getting treated,” she said. “Like, not a chance.”
She had decided on an open-casket funeral.
“I was going to be a pretty corpse,” she said.
Even while preparing for death, she found that the feminization procedures gave her more confidence. “I wanted to blend in and be able to go out in public and just kind of be ignored,” she said.
Ms. Capasso believes that her transition — and her new life as a woman — is what has kept her alive.
But her newfound confidence was fragile.
Whenever she went to Memorial Sloan Kettering, she felt dread, and not only the mortal kind. “I was constantly being reminded, every time I went, that I am different,” she said. “It immediately brought me back to earlier days when I was very visibly trans, and it was rough.”
A Secretive Environment
It is unusual for patients to record their own surgeries, or for such a recording to become key evidence in a lawsuit.
But it is not unheard of.
One man who recorded audio while sedated during a 2013 colonoscopy in Virginia sued over the anesthesiologist’s remarks. The doctor told other medical staff members that she found the patient so annoying that she felt like punching him. She said a rash on the patient’s genitals was probably “penis ebola.” The patient, who was awarded $500,000 by a jury, said he had hit record on his phone because he wanted documentation of what the doctor said. He worried that the sedation would leave him too groggy to remember.
Ms. Capasso insists that she was not trying to catch the medical staff speaking disrespectfully about her. She said she was motivated by curiosity and a desire to know exactly what the surgeons discovered. It may not be such an unusual impulse.
Dr. Alexander Langerman, a surgeon at Vanderbilt University Medical Center, led a medical conference in 2021 on surgical recordings.
There is often “a really strong desire by patients to know what happened to them in the operating room,” Dr. Langerman said. “And, I think, a valid right to know what happened.”
Surgery was once a relatively public event — operating rooms were called “theaters” for a reason. But infection control and malpractice litigation pulled the operating room out of public view.
“Operating rooms and surgery have become one of the most secretive environments in modern society,” said Dr. Teodor Grantcharov, a Stanford University professor who started a company that uses operating room recordings to improve patient safety and hospital efficiency.
The Recording
On the day of the March 2022 surgery, Ms. Capasso put her clothes, purse and keys in a bag provided by the hospital. She turned on her phone’s recording app and placed her phone in the bag, too. The bag, she hoped, would follow her into surgery. She remembers lying there, worried the anesthesia wasn’t working. Then, she was out.
In its response to the lawsuit, Memorial Sloan Kettering suggested that Ms. Capasso’s actions raised privacy concerns.
“The secret recording captured portions of a discussion that occurred during surgery while plaintiff was under anesthesia in which staff members discussed plaintiff’s transgender status with every reasonable expectation that plaintiff would not hear this discussion,” lawyers for the hospital wrote in court papers.
The court papers say little about the substance of the remarks, beyond stating that the hospital “denies that the surgical team mocked” Ms. Capasso.
“Plaintiff’s clandestine recording is largely inaudible, such that it is impossible to ascertain the speakers or the full context of their discussion,” the hospital’s lawyers wrote.
On the recording, which was shared with The Times, it appears that the medical workers are discussing their feelings about transgender identity. It is difficult to discern how many people are talking, but the remarks are clear.
“Not that it’s not right.”
“It’s not.”
“It doesn’t make sense.”
“I don’t get any of it, I’m sorry.”
Then, one of the workers suggests that they simply don’t know enough.
“That’s the thing,” the voice says. “It’s hard to understand because you don’t see it every day; you’re not living it.”
At various points during the conversation, there are repeated mentions of something that had happened earlier, when Ms. Capasso arrived.
She had been asked to take a pregnancy test, a routine preoperative step for female patients. Even though she doesn’t have a uterus, she had offered to do whatever was easiest.
“I don’t want to go into the operating room with any bad vibe,” she later explained.
In the recording, the health care workers can be heard reassessing how Ms. Capasso’s medical records describe her. “It’s not supposed to just say ‘female,’” one can be heard saying. “It’s supposed to say ‘transgender female.’”
“It’s still wrong per se,” someone says.
Then, the conversation takes an unexpected turn. One health care worker announces that she will contact an administrator who works on improving care for L.G.B.T.Q. patients. “She’s, like, in charge of this trans stuff,” the worker says.
A phone call ensues. After explaining the situation — “they’re ordering pregnancy tests on the patient, too” — the medical worker explains that she has updated Ms. Capasso’s medical records, and wonders if that was the correct thing to do.
“So then we have to have it changed back to ‘female?’” the worker asks. “I was just trying to make things right.”
But then the worker seems to reconsider.
A Single Letter
After the surgery, it was there every time Ms. Capasso logged into her online patient portal or looked at test results: “M.”
Before, she had generally been listed as “F” or “female” on any form with a field for “sex” or “gender.”
Ms. Capasso wondered who had made the change and why. It was around then that she listened to the recording. Her stomach dropped when she heard the discussion about marking her down as male.
According to her lawsuit, the “M” in her medical records changed her interactions with hospital staff. At imaging appointments and blood draws, staff members looked at her longer than they had before, struck by the dissonance.
“My name is Jennifer, I look the way I look and I sound the way I sound, but it says ‘M’ on there,” she recalled. “You could see there was a little reaction.”
She just wanted cancer care. “I don’t want them concentrating on my transgender status,” she said. “I’m going there for them to keep me alive, and hopefully cure me
In legal filings, Memorial Sloan Kettering states that “its records accurately reflect Plaintiff’s sex assigned-at-birth as male.”
“Such information is relevant to and necessary for the provision of standard-of-care treatment,” the hospital stated in court papers.
Medical journals and research articles have emphasized that doctors should be fully aware of the anatomy of their transgender patients — as well as the sex they were assigned at birth — in order to screen for diseases such as cancer and to properly interpret lab results.
Transgender women, for example, are less likely than men to be screened for prostate cancer, although they can remain at risk, according to research studies.
When Ms. Capasso asked Memorial Sloan Kettering to change her designation back to “female,” she was told it would take two or three years, according to her lawsuit. Administrators said that they needed to wait for new record-keeping software.
The hospital alludes to this exchange in legal papers, which describe how staff members sought “to explain the limitations of its previous electronic medical records systems in respect of the way in which sex and gender identify was reflected.” Those explanations didn’t add up to Ms. Capasso, who had worked as a software engineer and for an artificial intelligence company.
It had taken no time for the health care workers to relabel her “male” while she was anesthetized. “But now I’m asking for it, and it’s going to be a couple of years,” Ms. Capasso said.
That was longer than she expected to live. “It felt cruel,” she said, “like they were trying to wait me out.”
Ms. Capasso had grown up around hospitals, and they didn’t intimidate her. Her mother eventually rose to run a public hospital system in South Florida. But long before that, she had been an emergency room nurse. When she couldn’t find a sitter, she would sometimes bring Ms. Capasso to her shift. “We were in the E.R., sleeping in beds in the back,” Ms. Capasso recalled.
“That probably has informed my willingness to speak up when things are going wrong,” she said.
This past January, nearly three years after her surgery, Memorial Sloan Kettering updated its electronic medical record system. Soon, Ms. Capasso began to see “F” and “female” on her records. She decided to pursue a lawsuit, she said, to help trans patients who came after her.
Her cancer has returned, and, in August, Ms. Capasso began a taxing round of radiation therapy to her lymph nodes. On a late summer afternoon, as she arrived for treatment, she tried to clear her mind of the worry she felt about both the cancer and how she would be received at the hospital as a trans woman.
She imagined she could gather up all the unpleasantness and anxiety and direct them, in a focused beam, to her tumors — like a radiation beam.
She was back at Memorial Sloan Kettering, the hospital she was suing. She said she had chosen it in the first place because “they’re the best.” Her opinion of the hospital’s cancer care hasn’t changed.
“I’m still alive,” she said. “I can’t complain.”
Susan C. Beachy contributed research.
Joseph Goldstein covers health care in New York for The Times, following years of criminal justice and police reporting.
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